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Chronic Pain

Natural Remedies For Polymyalgia Rheumatica


Date: 15/09/11
 
What is polymyalgia rheumatica, how do you get it and how do you get rid of it naturally? Conventional treatment for polymyalgia rheumatica (PMR) is with steroid drugs, which themselves have many unpleasant side-effects and do nothing to cure the underlying problem. Luckily, some effective natural remedies are reported to provide welcome alternatives to drug treatment for sufferers of this nasty condition...

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Polymyalgia rheumatica (PMR), which literally means many aching muscles, is an inflammatory disorder of the muscles and joints characterized by pain and stiffness, affecting both sides of the body, and involving the shoulders, arms, neck, and buttock areas. Patients with polymyalgia rheumatica are typically over the age of 50 years and it affects almost half a million people in the UK, with women being more likely to be affected than men.

The onset of PMR can be abrupt, or it can creep up slowly over a few weeks. If you have PMR you will most likely have muscle pains, sometimes quite sudden and severe, in your shoulders, neck and upper arms and also in your hips and upper legs. You may find that morning stiffness is a problem, to the extent that you may need help in getting out of bed.

You could also have other symptoms, such as lethargy, depression, weight loss and fever. The disease often goes away without treatment after a year or so, although few people have the patience to put up with the symptoms for that long!

The symptoms of PMR may at first appear similar to those of other inflammatory illnesses, such as rheumatoid arthritis, fibromyalgia and lupus. In fact, PMR has only been recognised as a distinct disease since 1969. Your doctor may need to carry out several tests before a diagnosis of PMR can be made, although there is no single specific test for the disease.

Although the underlying cause of PMR is unknown, it has been suggested that it is an autoimmune disease, in which the body is attacked by its own immune system. It also appears to be linked to another inflammatory condition called giant cell arteritis (not to be confused with arthritis) that 10 to 15 per cent of PMR patients are also diagnosed with. Giant cell is a disorder that results in swelling of arteries in the head. Most often the temporal arteries, which are located on the temples on each side of the head.

Conventional treatment for PMR is with steroid drugs, which themselves have many unpleasant side-effects and do nothing to cure the underlying problem. Luckily, some effective natural remedies are reported to provide welcome alternatives to drug treatment for sufferers of this nasty condition.

Polymyalgia rheumatica: Don't risk steroid medication boost -  your body's own steroid hormones instead

The conventional treatment for PMR is the scattergun approach of steroid drugs the usual standby for any kind of acute inflammation. Your doctor will probably prescribe the powerful artificial steroid hormone Prednisone. This will certainly relieve the symptoms, often within a day or two, and may seem like a magic bullet. But long-term treatment with these drugs carries a number of serious risks, including weight gain, diabetes, glaucoma, cataracts and osteoporosis, so it makes sense to reduce the dose to the lowest needed to control the symptoms.
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You may also be prescribed non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or diclofenac, to control the pain. But the effectiveness of NSAIDs tends to reduce with time and they can cause digestive problems, stomach bleeding and nausea. They have also recently been linked to an increased risk of high blood pressure and heart disease (BMJ 2004;329: 1317-20).

You can help to reduce the amount of steroid medication you need by making sure that your bodys own steroid hormones, which are made by your adrenal glands, are being produced efficiently. The first step is to cut out things that put the most stress on your adrenals sugar, caffeine (found in coffee, tea and cola) and nicotine. The next step is to attempt to boost your own steroid hormone production.

Pantethine, which is manufactured in the body from vitamin B5, is essential for the proper functioning of the adrenal glands and for the production of natural steroids, called glucocorticoids.

Boosting your own production of steroids can help bring the same benefits for relieving PMR as taking artificial steroid drugs, but without the harmful side effects. Pantethine also increases the levels of essential omega-3 fatty acids in the body, which also reduce inflammation (Int J Clin Pharm Res 1985;5(5): 309-18).

The recommended dose of pantethine is 600 mg a day. Other nutrients that provide your adrenal glands with the raw materials to produce natural steroid hormones are vitamin C (1-2 g a day), vitamin B6 (50-100 mg a day as part of a B-complex supplement) and vitamin A (12,500- 25,000 IU a day, but avoid in pregnancy).

Polymyalgia rheumatica: These natural anti-inflammatories can reduce your reliance on drug treatment

It is believed that natural anti-inflammatory compounds in herbal remedies and food supplements can also help you reduce your reliance on medication, and so reduce the risk of harmful side-effects. As mentioned above, essential fatty acids such as omega-3 found in oily fish, have a good record of reducing inflammation, decreasing pain and increasing the ease of movement (Atherosclerosis 1990;81: 209-16).

The omega-6 essential fatty acid gamma linolenic acid (GLA), found in evening primrose oil capsules and borage oil capsules, can also reduce morning stiffness, and is frequently of help in PMR (Cl Immunol Immunopathol 1997;83(3); 237-44). Try ingesting 3,000 mg of omega-3 fatty acids and 1,500 mg of omega-6 fatty acids daily.

Bromelain, an enzyme derived from the pineapple plant could hold promise for PMR sufferers. Although most research with this enzyme has involved people with rheumatoid arthritis, its ability to reduce inflammation could be just as valuable to those with PMR.

In a trial involving 25 patients with severe RA, an enteric-coated bromelain supplement substantially reduced joint swelling and inflammation. Whats more, most patients were able to taper off their steroid medication to small maintenance doses (Penn Med J 1964;67: 27-30). Take 600 mg of bromelain a day, on an empty stomach.

Methyl-sulphonyl-methane, or MSM, is a natural sulphur compound produced in the body that is often used to control the pain and inflammation of arteries and is likely to be of benefit in PMR, too. In one six-week study, patients taking 2,250 mg of MSM a day reduced their joint pain by an amazing 82 per cent, compared with an 18 per cent improvement in those given a placebo (Int J Anti-Aging Med 1998;1(1): 50). The recommended dose is 1000 mg of MSM a day.

Supplements are not the only way you can help yourself to beat PMR. Also suggested to help PMR is regular gentle exercise, massage and electro-acupuncture. For more information on electro-acupuncture, please contact the Acupoint Herbalist Centre, 42 Goodge Street, London W1T 2QR, tel. 020 7436 9735.
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Comments

Jay Rogers Posted 31/05/2008

Very useful information.

S Boyd Posted 19/06/2008

Very informative. I'm taking steriods now and looking for other ways to help with this problem.

Jan Collins Posted 04/07/2008

I am\desperate to come off prednisilone for obvious reasons, weight gain being no.1. Has anyone tried taking pantethine and prednisilone together in an effort to reduce the latter?

C. Pearson Posted 08/07/2008

Very useful info. Does anyone find that they are reducing the dosage of steriods only to find that the symptoms are worse and they have to increase the doseage again. Doctors are not very clear about this I find. Like Jan Collins I want to stop prednisilone weight gain being the worst part of it!

Joan Collins Posted 26/07/2008

Currently taking prednisone for polymyalgia rheumatica.

Andi Williams Posted 18/08/2008

Trying to manage without steroids, five months in. Difficult but managing with supplements, etc.

Pam Lewis Posted 30/08/2008

My husband has recently been diagnosed with PMR and prescribed steroids about three months ago. Because of side effects he has been instructed to cut the dosage down each fortnight. He is finding it extremely difficult each time he reduces the tablet and finds his symptoms worsen. Would be thrilled if a herbal remedy could help. Could I have more information please and can you take the supplement with the steroid? Thanks

Loretta Tucker  Posted 03/09/2008

I got sick January 2008 and iI have to say it has been hard to never feel well, always uncomfortable and not able to drive for long periods. However I maintain that I have to keep active and am still going to work daily. I have a really bad neck - arms - bottom and it appears to be in my upper leg joints and my knee joints. I get pain down the front of my leg - my shin bone. I also have some slipped disks. Right now I have given up all caffeine, sugar, flour,dairy, alcohol and all processed food. I also am drinking 3 litres of water per day. trying to detoxify my system. My Doctor wanted me to take steriods but I have refused. Have anyone gotten over this mess. I am hoping I do not have it but I believe I do.

 Posted 10/04/2008

harold rader Posted 16/09/2008

I have had PMR for 5 yrs. for the first 2yrs I was on prednisone. that almost caused me to bleed to death 3 times. The best thing to do is get a book called "The Vitamin D Cure" by Dr. James Dowd. Following his advise will ease your suffering greatly.

Isobel Scorgie Posted 16/09/2008

I also appear to have PMR. I'm about 1 year into it. I have only just read the above website and am looking for some help with what supplements, vitamins, etc. I should be taking rather than steroids, which I have refused. I'm encouraged by what I have read above. Please help with some info. re the supplements.

Linda Werne Posted 23/09/2008

I have been taking prednisone for about three years and feel that is just masked the problem but does not heal. Very frustrated with PMR. I have gone to two specialists and each has given me more and more meds!!! No thanks.... I find it rather odd that neither one had mentioned what I should eat or even exercise. The last one I paid $170.00 for one office call.... I want to go only natural products. Help!!!!!!

s Posted 25/09/2008

I have only had this condition for about a month now but it is getting me down. My doctor suggested steriods but I have refused... Please tell me there is something else which is safer....

Anne Harwood Posted 30/09/2008

I was diag with PMR in june was in spain at the time where i live 6 months of year. I woke one morning feeling stiff and sore (irun 5 times a week)just thought id overdone it by the end of the week iwas in agony couldnt even lift the hairdryer. Went to my docters here who confifmed this horror id never heard of. He told me steroids where the only answer for me who never takes as much as a headache pill wasnt what I wanted to hear However I resisted a few more days until Icould hardly move The 1st 60 m tab was like a miracle in 6 hours Iwas feeling like me.The downside is its been downhill since end of Aug. Having returned to England armed with letter and results from doc the consultant in England reduced my dose very quickly even though i told him I felt the sypmtoms coming back he said my ESR was normal.Im back in Spain in agony Doc here says had a relapse due to being tapered too soon Im landed with 8 kilo weight gain a camels hump tips of fingers that look like Ive spent hours in bath moonface bruising and for a60 yr old that could run a4 hr marathon I feel 90 I cant wait to get off PREDNISALONE WHY IS IT ALLOWED ITS A SENTENCE.I will do anything to find a natural way to get My body back

Anne Harwood Posted 30/09/2008

I was diagnosed with PMR in June was in Spain at the time where I live 6 months of year. I woke one morning feeling stiff and sore (I run 5 times a week)just thought I'd overdone it by the end of the week I was in agony couldn't even lift the hair dryer. Went to my doctor here who confirmed this horror I'd never heard of. He told me steroids where the only answer for me who never takes as much as a headache pill wasn't what I wanted to hear However I resisted a few more days until I could hardly move The 1st 60 m tab was like a miracle in 6 hours I was feeling like me.The downside is its been downhill since end of Aug. Having returned to England armed with letter and results from doc the consultant in England reduced my dose very quickly even though I told him I felt the symptoms coming back he said my ESR was normal.I'm back in Spain in agony Doc here says had a relapse due to being tapered too soon I'm landed with 8 kilo weight gain a camels hump tips of fingers that look like I've spent hours in bath moonface bruising and for a60 yr old that could run a 4 hour marathon I feel 90 I cant wait to get off PREDNISALONE WHY IS IT ALLOWED ITS A SENTENCE.I will do anything to find a natural way to get My body back

Leslie Carlson Posted 03/10/2008

I have had PMR roughly two years. The MD has cut the meds to one mg. I have just started Acupuncture (twice a week) and have found great relief. I will now add more Vitamin D to my diet. I am a 61 year old male.

anne Posted 08/10/2008

I have had PMR since July 2007.My Rheumatologist put me on steroids for six weeks (during this time I was pain free) he then decided to send me for tests for other disorders and i had to come off steroids. The tests for other illnesses have come back clear, but he didn't want me to go back on steroids so I have plodded on with this miserable condition with diclofenic, codeine and ibruprofen naproxen he kept changing pain relief. In August this year I heard about devils claw, I stopped the nsaids and started on devils claw ,magnesium ,zinc and vit B5 to boost my own steroids. Within 4 days the pain was easing, I feel better now after 2 months than idid with all nsaids and I dont feel so tired. I feel that the terrible unaccountable fatigue of PMR is going. I am so relieved I found devils claw, the symptoms of PMR are so debilitating and painful I feel so sorry for anyone who suffers this.I just wanted to talk about devils claw I hope it works for others.

John Posted 10/10/2008

As a very active 42 year old who cycles 400+ kms a week I was brought to my knees by PMR in 2007. It literally happened overnight and it took two months of visits to doctors, x-rays and MRIs before I finally saw a rheumatologist in Alicante who diagnosed it - the clincher was that I also had the symptoms for Giant Cell Arteritis. I do not fit the profile of a typical PMR sufferer and i can't find any info on people in their early 40s who have it. I was started on 80 mgs of prednisone and got it down to 3mgs within 7 months before it flared up again in August. I'm nw back on 30 mgs but will taper each two weeks back to 10 mgs. For what it's worth, since being on the steroids I have managed to keep riding 15-20 hrs per week and that keeps the weight gain to a minimum. I have bouts of fatigue that can last a week or so before I get back to "normal". The only real negative is that I still have a deep, dull pain in my left hip that won't go away no matter how high a dose of prednisone I am on. Scans and x-rays show no hip joint, bone or muscle damage - so I guess it is the PMR. I will try some of the natural remedies suggested to see if they help. Good luck to you all.

susan dempsey.  Posted 18/10/2008

I have had this miserable complaint for about 6 wks now, I am getting by on paracetamel and paracodol, I find this is enough for now, hoping it dosent get any worse. I also refuse steriods...I am an elderly lady and cant take a lot of risks, I am also trying Celadrex tablets, which I am told are very good for this illness. Wishing well for all PMR suffers/ Good luck...

Jean  Posted 25/10/2008

Had PMR since Sept 2004 still got the awful complaint been on steriods down to 1mg daily been told by GP not really doing much good at this strength so I have decided to stop taking them and see how I go =-no one seems to take this illness as serious if only they had it! I will be trying Celadrex. Good luck for all PMR suffers/

Jean Posted 25/10/2008

Had PMR since Sept 2004 very painful been on High Steroid dose now down to 1mg still in lot of pain doctor said 1mg not doing very much so I have decided to stop taking them for all the reasons quoted above was not prepared to go back on high dose at present see how I feel within the next weeks or so. Is there no one out there who is looking into this awful complaint so many people have this but trying to get help and answers for this is impossible. Off to Health Shop to see what I can try in place of the dreaded Steriods Good Luch everyone!

Janis Herb Posted 04/11/2008

interesting site.

Liz O'Brien Posted 06/11/2008

PMR crept up on me over a period of 6 months until 2 x 600mg twice daily of Ibrufen was of no use and I finally went to a chiropractor and after 4 expensive visits he said I should see my doctor as he was sure I had PMR as I was in agony with pain all over. He gave me a letter for doctor who put me on Presnidone Steroid tablets 40mg reducing down to 5mg and after 2 days I felt wonderful, however the PMR returned and I started the course all over again eventually down to 1mg. I then came off the 1mg after one year of steroids. I am still very stiff and achey at times but have decided to use Paracetamol for the flu like symptoms of achiness rather than go back to doctor. My facial skin is not so nice either and now flares up so easily. I intend to start cod liver oil to see if this can help. I also have very stiff sore hands in the morning. Best wishes to anyone suffering at this moment but I could not have gone on with the terrible pain without steroids and only have gained 3 or 4 pounds but it really increases the appetite. Liz

Liz O'Brien Posted 06/11/2008

PMR crept up on me over a period of 6 months until 2 x 600mg twice daily of Ibrufen was of no use and I finally went to a chiropractor and after 4 expensive visits he said I should see my doctor as he was sure I had PMR as I was in agony with pain all over. He gave me a letter for doctor who put me on Presnidone Steroid tablets 40mg reducing down to 5mg and after 2 days I felt wonderful, however the PMR returned and I started the course all over again eventually down to 1mg. I then came off the 1mg after one year of steroids. I am still very stiff and achey at times but have decided to use Paracetamol for the flu like symptoms of achiness rather than go back to doctor. My facial skin is not so nice either and now flares up so easily. I intend to start cod liver oil to see if this can help. I also have very stiff sore hands in the morning. Best wishes to anyone suffering at this moment but I could not have gone on with the terrible pain without steroids and only have gained 3 or 4 pounds but it really increases the appetite. Liz

MJ Posted 07/12/2008

In 2003 I was diagnosed with Fibromyalgia and PMR...I started on 60 mg prednisone, doses fluctuated over the years depending on ESR and CRP rates, and for the past year also treated for GCA...each time we try to wean me off prednisone, I get in serious trouble/hospitalised many times with severe complications....we've also tried chemo as an alternative treatment after second opinions from UNH Hospital in CT. I deal with temporal/eye/head/all-over pain, weight gain, and moonface, just to name a few complications/have no pain relief except for oxycontin and morphine, and am very distraught...I've tried natural remedies & have no relief.....prayers please/thanks

JN Posted 14/12/2008

Have recently been dianosed with PMR and put on 60mg of prednisone to deal with possible GCA as well. Am now down to 10mg with instructions to get down to 5mg however symptoms are returning. I don't want to go on a higher dose and have discovered MSM which I'm going to start tomorrow, along with Omega 3/6 capsules and Calcium/Mg/Vit D and B Vitamins although I find they don't really agree with me....strange. Good luck to everyone and hope that if anyone has success like the devils claw they will post it. I did research devils claw but on the bottle I was about to buy it said not to take it if you have any ulcers which I found I had in my colon after a colonoscopy recently, so think I'd better leave that alone, unfortunately :( Nothing's simple!

Leslie H Carlson Posted 16/12/2008

I have now gone off all steroids. I have continued Acupuncture on a once a week visit. I have also loaded up on Vitamin D & D3. I have no pain most of the time. I attribute what little pain I have to old age (61). I played golf on 28 November and felt absolutely no pain. I have found great relief in Acupuncture.

J.R Posted 27/12/2008

I was diagnosed in May 2008--by accident. I returned from a Med. cruise, stiff, achy , unable to get out of bed by myself and had a frozen shoulder- Tx was prednisone for the shoulder-within 6 hours all the other symptoms disappeared. In 3 days the symptoms returned and the diag. was made. Accupuncture did not help! Now I have Diabetes 2, and bruising. I want off the prednisone. I'm in USA

mary east Posted 10/01/2009

have a read up on plant sterols as a helpful adjunct or alternative to steroids, they seem to be helping some people.

mbell Posted 18/01/2009

I was diagnosed with PMR in Oct. My symptoms included fever, night sweats, rashes on legs, ankles swelling, along with the extreme fatigue and muscle pain. I am on 15 mg of prednisone. It has helped tremendously, but I still feel like I am carrying weights on my shoulders and arms, muscle pains in legs, and am not sleeping. It is scary to think of reducing the prednisone or getting off of it. Scary to stay on it! I tried to reduce prednisone from 20 to 10 mg and all symptoms returned. Are you taking the devils claw, vitamins, omega 3 along with the prednisone? My Dr. is pretty much letting me decide when I should try to reduce prednisone. Has anyone tried Gemlarax or Myalatab as alternative treatments?

Andrea Albon Posted 24/01/2009

My mother now 75 has PMR and had giant cell arteritis. She has had this condition for 5 years and on prednisilone. She decided to cut her self down on her medication far to quickly and after 3 and a half years got a rebound. This is from cutting down far to quick. It is not worth it and one should be very careful. I completely understand the wanting to come off steroids but if you do it to fast PMR will be around so much longer. She had to start completely again!! Most often ,once your down in the 8-10mg prednisilone level it may be only half a mg lower at a time for 2-3 weeks at a time to drop. Make sure you doctor checks your bone density as prolonged steroid treatment causes osteoporosis. This my mother found the hard way fracturing her spine and having to stay in hospital then shortly after that her ribs. Sometimes you have to be insistant to your Dcotor about checking your bone density but beleive me: prevention is far better.

Bob T Posted 30/01/2009

I have PMR, started out at mg of prednisone and I am now down to 10 but symptoms are coming back. I am not going back up as now I have liver problems along with other bad side affects that the Doc says are from the medication. I am going to try and fix it naturally.

Babs1221 Posted 02/02/2009

My PMR Has been with me since 2003,I am currently on 4mg a day even though I have bruising on my arms and shins I can say my quality of life is more important.I also take Tramadol 50mg 2x a day these 2 pills together saved me. and has no effect on the stomach.Good Luck

Tony Posted 02/02/2009

A lovely piece of information for soemone who knows very little. Thank you.

Maryann Posted 03/02/2009

Now into my 2nd year with PMR and have reduced and increased the prednisone dose. When I decrease the pain comes back. No weight gain though. Want another alternative....HELP!!

Graciela Bollman Posted 03/02/2009

I have been diagnosed with PMR last November 208 and start to taking predinisone 10 m. per day , I want to get off and start natural remedies. I need to start cutting down this medicine according to my doctor to 1 mg, each 3 weeks. My questions is can I take a natural remedie with the prednisone at the same time? Can I cut the medicine sooner and in what way? What do I need to take naturally to try to fix the problem with the PMR. Since this problem started and with taking the medicine I have problems in my throat and breathing problems, light headaches and I think it could be the predinisone.

L T (FED UP) Posted 11/02/2009

I have been miserable since January 2008 - diagnosed in June 2008 with PMR. I am trying eveything. Is anybody listening? Do you know of anyone who has gotten over this. I like the note that it could go away as quick as it comes. I'm still waiting and I'm going as natural as I can. But I do take one pill that is used for arthritis that is arthrotec - suppose to be really hard on the stomach but I make sure I take it with lots of food. Keep posting. I am waiting for some great news from someone. Any kind of doctors out there that could shed some light on this. Thanks for listening. I know you guys care as we are all in this together.

Maryann Posted 11/02/2009

Into my 2nd year of PMR and down to 4 mg of medrol - a kinder form of prednison. I ordered gemlarax and was told I could take natural remedies along with the steroid. This is a horror!!!

Iris Posted 12/02/2009

I was diagnosed with PMR and took Prednisone for six months and it helped. I was told to eat protein and I have done that for 4 months and have had no pain and am off Prednisone. The drug increased my blood sugars and my cholesterol levels to dangerous numbers. I am so thankful to be off it and happy to eat fish and chicken and beans and peanut butter. It might not work for others but it doesn't hurt to try it. It's food we need.

Ronald Samphere Posted 17/02/2009

Appreciate all the good comments.

LT Posted 19/02/2009

LET'S BE POSITIVE, IT IS A MESS (I KNOW BECAUSE I AM ONE OF YOU, BUT WE WANT TO KNOW HOW TO MANAGE THIS WITHOUT CAUSING OUR BODIES ANY MORE PROBLEMS. PLEASE POST YOUR SUGGESTED REMIDIES OR AIDES TO ALLEVIATE SOME OF THE MYSERY. LOOK FORWARD TO READING YOUR TIPS. THANKS

Barbara Posted 09/03/2009

Hi,Has anyone tried The Natural Alternative Gemlarax,I would like to buy this product if anyone felt it was helping with the pain.Thank You,Barbara

Maggie Southgate  Posted 10/03/2009

In 2006 I was diagnosed with PMR started on 20mg Prednisone reducing by 5mg every 2 months untill 5mg then reducing by 1mg every 2 months the 1mg every other day. Now I am off the Prednisone since Jan.2009 all was well until a few days ago, as now I feel my joints starting to ache. I don,t want to go back to Prednisone would like to find an alternitive . Thanks for all your comments will try them out

Fay Reid Posted 12/03/2009

Worst case of PMR doctor had seen - started on Prednisolone 30mg. Felt better in 4 hours after suffering for 6-8 months. Gradually reduced dose over 5-6 months then slight relapse due to stress, but now free of symptoms. Have wondered if Hypothyroidism could have anything to do with PMR, with Carpal Tunnel and Shingles all at the same time as PMR. Doctor says Thyroid normal, but I proved Hypothyroidism with old fashioned "Dr Barne's Basal Temperature Test", and suffering pain in groin like a pulled muscle. Kelp tablets cured pain in groin and mini dizzy spells (experienced over 3 years)and Thyroid hormone levels improved and no longer at the lower end of normal range. Carpal Tunnel surgery not completely successful, but B and C vitamins reducing slight tingling in fingers which gets worse after gardening or pruning. Check Thyroid function- could possibly be a connection to PMR. Good Luck.

lillian Weber Posted 14/03/2009

My PMR slammed into me like an explosion. Woke up one morning two weeks ago with upper arm pain and now I am in agony. My wrists, shoulders, knees, ankles all hurt. I first blamed it on some aggressive spring cleaning. I was fortunate in that my first appointment with my rheumatologists, I was diagnosed with PMR. I started with 10mg prednisone twice daily today. I had never heard of it till today and didn't realize what a horror it was till I started reading all the comments. Does anyone know if early diagnoses gives you a better chance of recovery?

Elisabeth Posted 15/03/2009

Wow! I was diagnosed about a month ago and was put on heavy dose of prednisone which made me violently ill. Was told by doctors there is nothing else I can take. After researching on internet for alternative medication I see that there are many sufferers of this disease. I will try some of the above. Good luck and health to you all.

fran leavens Posted 16/03/2009

My wife was diagnosed with both fibromyalgia and PMR,and now osteoarthritis as well. I believe the osteo is from the prolonged use of prednisone. Through leg message, and the use of the brookstone pain wand,(an infra-red light emitter) we have controlled the muscle pain,however the joint pain was still a problem. Helen needed anti iflammatories to reduce inflammation. This caused acid reflux leading to hiatal hernia. She can no longer take the nsaids. We stopped the nsaids and a product called zyflamend(an herbal anti-inflammatory), until she felt better as far as the acid reflux went. This caused the inflammation to return in her knees. You could feel the heat in her knee joints. We decided to try keeping at her latest low dose of prednisone(7mgs per day). Then we added back the zyflamend at 1/3 the recommended dose,this and the pain wand took away the inflammation. I massage and use the pain wand on her legs each night. She takes 7 mgs. prednisone each day. It used to be 40 mgs. She is also taking the zyflamend(take it just before a meal it does comeback on you otherwise) We get our zyflamend from www.swansonvitamins.com) but you can buy it at any herbal supply. The manufacturer is new chapter.. Fran

ann Posted 21/03/2009

Only told yesterday I may have PMR. Just read all your comments and I am slightly worried...

kate duncan Posted 27/03/2009

My PMR is a year old now (happy birthday!) and I can find nobody in my town who has ever heard of it - even some medically-connected people. So it was very helpful to read the comments of other sufferers. Since I've been active all my life it is an enormous setback to have this in my seventies.

kate duncan Posted 27/03/2009

Where do we find the answers to all our questions, esp. is it safe to use your suggestions along with Prednisone?

louise Posted 31/03/2009

I am 41 years old and have been told I have PMR. I was given a dose of steriods 30mg per day but the head and eye pain was too bad so stopped taking them. The doctor reduced the dose to 15mg per day this morning so fingers crossed. Is the eye and head pain normal?

Dennis Posted 09/04/2009

I am 60years old and have just been diagnosed with PMR. I lead a very active life and contracted it almost overnight after a bout of campylobacter food poisoning, (holiday in Phuket!) The main symptoms were pain in the neck, shoulders, upper arms, lower back, head and back of eyes. It felt as though I had just completed a heavy work out and the body was loaded with lactic acid and it ached. Sleep was difficult as I couldn't lie on either side or my stomach. When finally diagnosed and put on 30mg of Prednisone, the change in 24 hrs was incredible. After 2 weeks I have reduced the dose to 10mg a day, taking 5 morning & night and I am back to my old self but realise the Prednisone is only masking the problem. Reading other comments, it appears that most sufferers have had active lives and PMR occurs very quickly. It seems that we may have a very healthy auto-immune system that is confused and raging and which after combating an infection continues to attack the body. The Prednisone disarms our system which relieves the symptoms, but getting our bodies back into balance is what we must aim at. My thoughts on that is, plenty of exercise, a lot of water, a balanced diet, good sleep and a good essential mineral intake. PMR is debilitating if not controlled but there is a good chance of recovery unlike other similar diseases which it is often confused with.

Colin Posted 09/04/2009

I have had many of the symptoms of PMR for about two or three years now, which I have put it down to getting older and possibly the menopause, and have just tried to work through them. Have mentioned the symptoms to several doctors, chiropractors, osteopaths and specialists, had x-rays and MRI scans, with no positive results. Am active, work full time and just knew there was something wrong. Now at last I have been referred to a Rheumatologist with blood tests etc. I am feeling very alarmed by everything I have read, especially about the steroid treatment. I do take many of the advised vitamins and wonder if they have helped to supress the symptoms to a degree. My pain is mainly upper arms, shoulder, neck and hips...I just couldn't understand what was going on. I so appreciate all the advice that people give on this site. Personally I would like to try and stick to the healthy life style approach if at all possible...but it strikes me that many feel that steroids are the only way forward...is this the case?

wally Posted 23/04/2009

70 years old, very healthy until I contacted PMR never even heard of it. Would like to get off of prednisone and into something more natural.

Anne Harwood Posted 25/04/2009

I last posted my comments on 30\9\2008. On the 5thJan this year I was found to have primary liver cancer. I underwent a 10 hr operation to save my life. I had no symtons it was found by accident. I don't drink alchohol, don't smoke, eat healthy and have run 19 marathons since I was 50. The complication to my already serious condition was the fact I was on Prendesalone. My liver had become very fatty (a side effect I found out later of prendesalone) I even believe that in some way this could have caused my cancerous tumour as it altered my metabolism. Nobody in my family and past generations have had cancer. My op was 11wks ago and the doctors are amazed at my recovery . I have got down to 5 mg now although my symtons came back I am determined to try a more natural approach,do not take steroids lightly they can be a killer...

pigen Posted 28/04/2009

Have had a lot of problems since mid January. Started over my left shoulder blade, after a couple of weeks my left buttock was affected making it agony getting in and out of bed and difficult sleeping. The pain in my left shoulder and backside are now almost gone, but it is now my right shoulder that hurts. I have seen the GP and had several blood test which have been inconclusive. This is a strange condition, even when I could hardly get out of bed, by the afternoon I was able to go for long walks and help my husband painting! Some days I feel really unwell and have a lot of pain across my upper back, the next day, like today, I feel almost back to normal. I think I may have PMR for sometime. About 1 year ago I had terrible pain in the back of my thighs esp. at night. It lasted a couple of weeks. I do not often see my GP, preferring to self-medicate. I want to avoid steroids if at all possible as I have a strong family history of osteoporosis. At the moment I am getting by with paracetamol, ibuprufen and devil's claw. I have ordered some Pantethine (expensive and difficult to get hold of), I will try anything to stay off steroids. It is very difficult to know what helps with a condition that seems to change from day to day.

debbie Posted 04/05/2009

I am 55 yrs old, & I was diagnosed with pmr over a year & 1/2 ago & my rheumatologist started me on predisone - 20 mg for two weeks, then to 15 mg, & then decreasing by one mg each month. I got down to 3mg & the pmr symptoms returned. I had to start all over again. I am now down to 7mg & I am reducing the dosage more slowly (every month & 1/2). Now that I am in the bottom zone of the predisone, I am beginning to add some of the natural herbs & vitamins to help build up my natural immune system & some to help reduce inflammation. I will post the results as I go along. Keep searching for natural alternatives.

Aftab Ahmed Posted 08/05/2009

I got diagnosed a few days after my 55th birthday. Now I am 58 and am on Prednislone almost non stop.I try to keep it between 5 to 7.5 mg daily because as soon as I go below 5 mg my aches return.

elaine Posted 09/05/2009

Have had symptoms for 3 months - diagnosed to the extent that is possible with PMR a couple of weeks ago. doctor immediately put me on high steroid dose- symptoms entirely disappeared in a few hours but were replaced by very unpleasant new symptoms including inability to hold down food so I only took the one dose. Read about steroids and decided they are not for me - the mess with your body - my doctor never told me that there were risks, or that i would have to stay on them for ages. Frankly i think that many in medical profession see them as a convenient quick fix - when I went back and told him the problem he offered no advice - nothing. So, I think my advice is to take personal control and not rely indiscriminately on the medical profession. I am trying natural remedies - and used ordinary painkillers which sometimes take the edge of the pain and I am insisting on having an Xray and having my adrenal gland function checked so that I can be sure there is not a very serious underlying problem of which PMR is a symptom. One step at a time - with careful consideration of the pros and cons - I think even though I am in acute pain a lot of the time the fact that I am informed and make my own decisions makes a big difference

Goretti Posted 10/05/2009

I am 56. I was diagnosed with PMR in November 2008. I started with 15mg prenisolone and am now tapering down from 5mg to 0mg over the next four weeks. At this stage, I am very keen to get natural remedies for PMR and find encouragement from these letters.Thanks.

Wayne Posted 17/05/2009

I have been on Prednisone for 3 years for PMR, I have now reduced this to 1mg per day, a friend told me to take 10mgs of Flax Seed Oil 3 times a day ( not the tablet) I think this has helped enormously I am a 61 year old male, I have been doing this for 4 weeks now, so I am interested in the future outcome

Rita Posted 20/05/2009

I am looking for natural medicine for Athritis and severe Osteoporosis

Lynn Posted 01/06/2009

I am glad I found this sight. Have PMR and have had it for 5 1/2 years. I started on 60 mg Prednisone and down to 10mg. 6 months ago I weaned myself off tottally , but lasted only a couple of days. 10mg seem to be it for me but am still in pain. I have a friend who has done research and there is an alternative being looked at. Naltrexone is used in small doses 3 to4.5mg.

Pigen Posted 23/06/2009

I last posted on April 28. Since then my ESR has returned to normal. I have still got some pain over my upper back and right upper arm but much improved. When I first saw my GP I told him I did not think I needed steroids at that stage. I have been taking Pantethine 600mgs daily, Devils Claw and Omega 3. I took Ipubrufen & paracetamol orally as necessary. When I started to get stomach pains I changed to Voltarol gel. I feel I am more or less back to normal now and I am so grateful I did'nt start on steroids. I realize I probably have or had a mild form of PMR, but thought my experience may be useful for other sufferers, who want to try and avoid going down he steroid road!

Julie Posted 25/06/2009

Why does no one seem to be doing any research into PMR? It isn't as rare as we are led to believe. I live in a small village in Kent, UK. In the past 5 years 5 of us have had it, 2 others in a neighbouring village. Is there anyone collecting data on sufferers? We're led to believe it's mostly older people but I was 46 when I first experienced symtoms and I've heard of a 38 yr. old with it. Shouldn't someone be looking for possible links, genetic, environmental etc. I went the chemical route for 2 yrs; steroids & immunosuppressants but ended with anaphalactic shock and now allergic to most chemically based drugs. Gained 3 stone, lost ability to focus eyes, enlarged liver, leg pain from statins, unable to eat without acid reflux despite two drugs to stop it. Wouldn't advise that route! I do get relief from Reiki. Can't drop steroids completely or get GCA. It seems we're just left to adjust our own medication and find alternatives. Specialist tells me it could last 10yrs - 7 down 3 to go but where's my quality of life and I'm wasting my only child's childhood.

Anne Posted 01/07/2009

I last posted 08/10/08. After suffering PMR for 2 years I think it is finally going! Blood tests stable. I have been taking Devils Claw, Magnesium and Vit B5 since last year and these have taken away the pain and made life bearable. I would recommend Devils Claw to anyone. When I first had PMR I could not get out of bed, it was so painful. I thought only steroids could help. I would never have believed a herbel remedy would be good enough, but there you go, I cant speak highly enough of Devils Claw, definitely worth a try.

Debs Posted 02/07/2009

Has anyone tried the natural supplement Celadrin -capsules or topical cream? It has quite fast-acting & wide-ranging anti-inflammatory action and quite a lot of research on it including muscular pain. Complimentary therapies can help. Magnesium and B5 previously mentioned definitely worth looking at. Re Statins, I have spoken to several people who get terrible muscular aches and pains from these. I know someone who was literally crippled in 3 weeks by statins & fully recovered now he's stopped them.

lt Posted 18/07/2009

Still suffering with PMR since Jan 2008. My GP and specialists scared me and said that I may be suffering from GCA as well and could go blind. Consequently started on predinsone. What a drug. Feeling so much better. Down to 7.5 but am scared to death of the complications of this drug that one loves to hate. I am definitly going to try devils claw because I still have pain even though sometimes I feel great. Yet the pain in the back of my head and sometimes my eyes , ears neck, shins and buttocks. I know that I still have the awful PMR. Want to get better and get off the steriod. Keep posting.

Toni Posted 29/07/2009

I was diagnosed with PMR a year ago after a fairly slow progression of symptoms to a point of no longer tolerable. I had been on 1200 mg of Advil daily. After two months I was referred to a Rheumatologist. I have taken Prednisone for a year and recently tapered down to 1mg/day. Symptoms returned, doctor increased dosage, we're starting over! I HATE the medication and what it has done to my body (other than relieving the pain). I am continually seeking some type of "non-chemical", less harmful remedy. I am glad to know I am not alone in this battle and empathize with all who are afflicted. I have been told by doctors that PMR goes away in 2 years, doesn't sound like it here.... Thanks to all for posting, the information has been helpful!

Marg Posted 04/08/2009

I was diagnosed with PMR in 2005 and was put straight onto prednisone 50mg reducing each month. I am now on 4mg and have tried several times to come down further but the pain becomes too much. I still suffer with pain in upper arms and shoulders at night and morning but can function most of the day which is very important to me. Did have a lot of pain in upper legs but now just weakness. I have always been a very active person playing sport and gardening etc but now can't run so sport is out for the present time. My GP had also had PMR before his colleague diagnosed me (my GP had been away at the time PMR was confirmed.) I have now read all of the above comments and live in hope that someone is looking into a proper cure for this horrible disease. I will definitely look into some of the alternatives to prednisone. Had bone scan and bone density is less than average person of 51 years. Good luck to all of you.

Clara Ollerenshaw Posted 07/08/2009

I have had PMR for the past seven years and have been on prednisone all that time. I am 56. I have recently come off 400mg (2x200mg slow release) of Tramadol - not a pleasant experience in that withdrawal was similar to someone coming off heroin. My doctor had been trying to give me some medication to control the pain but I'm not covinced that this was worth it. I am Still on 5mg of prednisone but will try to reduce that in nthe next couple of months. I have tried natural remedies in the past but not much success.

Now I am basically attempting to put up with all the pain and stiffness with an occassional ibuprofen or voltaren so I can get a decent nights sleep. My quality of life has decreased since going off the painkillers but my sanity is better in that my brain does not feel so fogged and I can say what I think the first time rather than having three goes at it. Like many of you I am concerned about the state of my body with long term use of steroids and anti-inflammatories and hope that I am going the right way in trying to tough it out. This condition is only supposed to last from2 to 5 years or less and I have had it long enough!

lt Posted 13/08/2009

STILL SUFFERING Posted above - started the wonderful hateful, horrible, terrible, drug prednisone at 10 mgs but I have reduced it to 7.5 and this week down to 5. Still got the symptons and still suffer but it sure is tolerable now. However, I am so scared of the 5 mgs of predisone that I am ingesting. I already have low bone density. /Terrible mess. Please someone post something positive. Some really workable system to help us get through. I can handle some pain in my head but I do not want to go blind from the GCA. HELP ME PLEASE>

lt Posted 13/08/2009

STILL SUFFERING Posted above - started the wonderful hateful, horrible, terrible, drug prednisone at 10 mgs but I have reduced it to 7.5 and this week down to 5. Still got the symptons and still suffer but it sure is tolerable now. However, I am so scared of the 5 mgs of predisone that I am ingesting. I already have low bone density... Terrible mess. Please someone post something positive. Some really workable system to help us get through. I can handle some pain in my head but I do not want to go blind from the GCA. HELP ME PLEASE.

subee Posted 15/08/2009

Wow, my people! Had the sudden onset 3 months ago, thought I had overdone the exercises, but it got quickly worse....Everyone knows all this part. Long story short, started on Prednisone 30 mgs a day. Now, I too am trying to taper off, but have the same return of symptoms, though after the initial attack, I think I may be able to live with some of it some of the time. I didn't find this web site to start with so went a different route and got a Pot recommendation, as it is legal for medical purposes in CA. It is a great anti-inflamatory and sometimes relieves pain for a day or more. Downside is the lethargy, but had that with the higher prednisone anyway. Getting off the Prednisone is about as dangerouse as it gets. Prednisone is converted into prednisolone (?) in your liver, not doing that organ any good, then the Adrenal Gland which produces your natural sterioids--the glucocortiscoroids (?) shuts down in the face of competition from the prednisone. You have to be very careful in reducing the medication so that the adrenal gland comes back into full production. as I understand it, the Adrenal gland can be damaged by being overwhelmed by demand when you stop taking the chemical steroid prednisone. Because of ulcers already I may not be able to use catsclaw but will try the other vitamins and supplements. Initially I had stiff neck and very sore throat and took a supplement of golden seal and echinacia. You never realized how well these things work until you get the negative side. PMR is an autoimmune disease, the prdnisone works in part because it knocks out the immune system. When I took the echinacia, I think it boosted my immune system back into gear and the symptoms came on like gangbusters again even though at that time I was taking maybe 20 mgs of prednisone a day. Thank you all for the encouragement!

mbell Posted 15/08/2009

I have had PMR since Oct. 08.. Posted first in Jan. 09 Since have reduced my prednisone from 20 mg of Prenisone to 2.5 m. to 0. Was difficult each time Tried Gemlarax and think it really helped me get off of prednisone. Off of prednisone for 3 weeks.. I take only 1 tablet each day. I am still off of prednisone altogether! Gemlarax.com..It is working for me!

PTP Posted 17/08/2009

Mine came on very suddenly, I was given Predisone which relieved the symptoms but I could see my weight increasing, plus I saw the long term effects this medication had on my Dad and I didn't want to go down that road. I returned to doctor asking for an alternative and she suggested a good naturopath. I have never looked back. I am on strong doses of Fish oil, strong magnesium and with some B6, and feeling great now. It took a good six months for it all to kick in, but during that time it was easing to how it is today. Not sure why all doctors don't suggest these alternatives.

N.G Posted 19/08/2009

To: PTP (from 17/08/09) It's possible to receive the dosage of the alternatives ? (fish oil, magnesium, B6) Thank you

joe Posted 22/08/2009

had pmr 2 months now, never took drugs. i'm taking gemlarax seems to help. Pain almost gone it's worth a try

lt Posted 28/08/2009

How much is strong doses of fish oil? How much is strong magnesium and how much vitiamin B6? Thanking you for your answers. lt

lt Posted 28/08/2009

How much is strong doses of fish oil? How much is strong magnesium and how much vitiamin B6? Thanking you for your answers. lt

lt Posted 28/08/2009

How much is strong doses of fish oil? How much is strong magnesium and how much vitamin B6? Thanking you for your answers. lt

mbell Posted 09/09/2009

Joe,

Gemlarax I know has helped me. Took it for 2 months and have re-ordered... I really believe Prednisone was the answer for me to have instant relief. Has been really hard to get off it but was easier with Gemlarax.. 6 weeks off prednisone.

Can't believe how sick I was this time last year. It is so working for me!

CKA Posted 12/09/2009

My mother has had PMR for about 2 years now. She'll be 80 next month. I hate seeing her suffer with this stuff! I've been reading this site hoping to find some answers for her. I'm hoping to get her to try the vit D, magnesium and B6 and maybe the fish oil. Sure wish we could hear back from PTP who posted recently. For those of you with leg pains and sleeping problems, we discovered that DE (diatomaceous earth- FOOD GRADE ONLY) has eliminated awful leg pains she would get at night. A rounded tablespoon of DE early evening mixed with orange juice is how she takes hers, it could be taken 2-3 times a day but read the following websites. Plus she takes 6 mg of melanotin about 30 minutes before retiring to bed, which has helped her sleep much better. Hope this helps someone. When she forgets to take the DE, the pain always comes back. Check out shadowridgedonkeys.com and earthworkshealth.com for more info. on the DE - you'll most likely have to special order the FOOD GRADE because it's not easily available at your local stores.

Kathleen Posted 21/09/2009

Just want to know if anyone else has a statin drug connection with their PMR diagnosis.

Randolph Posted 22/09/2009

I was on Simvastatin to control cholesterol after having coronary by-pass. I read many bad reports about this drug & told my consultant I would not take it anymore. He disagreed with my findings but I still refused, unfortunately I think the damage had already been done. I am 74 years old and really want to get off Prednisalone before it gives me more problems than it cures. I am down to 10mg daily but this is not really enough to relieve all the symptoms. This is proving to be difficult as since my wife died of cancer 18 months ago, trying to cope alone with cooking, cleaning, general house maintenance and managing is very difficult with all the pain & stiffness. Very useful site

pigen Posted 30/09/2009

I last posted June 09. I have been virtually painfree for the past month and have only resorted to painkiller once or twice. I do not know if this is the end of it or if the improvement is due to all the various supplements I swallow or if it has got anything to do with the quiet stable weather we have had this past month or if I would have got better anyway! I am just glad I feel normal again and that I decided steroids would be the very last resort.

A.Pickersgill Posted 07/10/2009

My mothers PMR started after a flu injection with pain spreading down the arm from injection point . Even her doctors seem to accept this as the most likely cause. It might explain why sufferers are often older and more likely to have had a flu jab. Has anyone else noticed a viral provocation?

Monica Posted 19/10/2009

Looking for natural remedies for PMR. Looks like rheumaton and gemlarax is scam. People making money out of sick people. Any comment appreciated.

Debra Posted 22/10/2009

Three years ago I took simastatin for 2 months,but discontinued it bacause I developed muscle pains and rosacea.My doctor recently persuaded me to try Crestor 10 mg because I have FH. After 11 days I awoke in the night with tingling hands. Three days later,after my regular yoga class,I was wracked with pain in my shoulders, arms, neck and hips.I came off the Crestor but there was no change. Two weeks ago my doctor diagnosed PMR and put me on 3x5mg daily prednisolone,which has eased most of the pain,but not helped with the parasthesia in my hands.The doctor is reluctant to blame the statin for this damage,and says it is coincidence. However I feel that I probably had an underlying auto-immune problem that was dramatically accelerated by a very powerful statin and would advise caution to anyone with PMR considering statin therapy.Now I have sky high cholesterol,PMR and steroids to contend with,thanks doc !

Eric Posted 03/11/2009

I contracted PMR on May 23 2008 - I woke up with it. I was not diagnosed until August 11/09. My GP started me on Prednesone @ 50mg in June '08 tapering off to 20mg. The specialist now has me down to 10mg every other day and Meloxicam 7.5mg twice a day on the other days. I get by quite nicely on that. I would like to try dropping the caffine and sugar to see what happens. I've read in places that it may go away in 3 years or less - I didn't like seeing the posting of someone with it for 5 years! Yikes!

Joanne Posted 08/11/2009

Hi, after reading everyones comments on PMR. I feel so sad about this as in some ways it is comforting to know that there are other people out there but at the same time I feel the same as all of you. I am taking 15mg a day that has been given by my GP (seeing specialist in 2 weeks time). What remedies are helping me at the moment along with this steroid is oil of evening primose, Niacin and Adrenal support (Metabolics). Changing my diet has helped too and not mixing protein with carbs. Trying different food combinations to stop my bowels from being irritated Instinctively, I don't want to take the steroids and will be weaning myself off them. This illness is really freaking me out, as I too used to do a lot of running and off road biking. I just feel everything has come to a complete stand still and wonder why this has happened, the pain/stiffness has destroyed my confidence and made me feel very depressed. I wish all of you who are suffering all the luck in the world to get over this as I am desperately trying to. Take care.

Mik Posted 21/11/2009

Nice site! As an active 65 year old retiree I was surprised (to say the least) to feel so old overnight two Augusts ago: stiff, sore, aching from shoulders to hips. Worse yet, no diagnosis was offered until March this year. I had never heard of PMR, and yet 20 mg of prednisone per day had me fit within days. Or so I thought. Two months later I was also diagnosed with Temporal Arteritis (TA) which is more dangerous as one can go blind. So up went the steroid doses to 60 mg daily. I am tapering off these levels now (under strict medical management) but the PMR symptoms have come back with a vengeance. On top of that I suffer from all the usual steroid complications. Dreadful! Can anyone tell me if and how Gemlarax works?

Sara Posted 24/11/2009

I'm an active 64 year old and I've had PMR since 2006 and got symptoms shortly after receiving a tetanus shot and month-long high-dose niacin therapy for cholesterol. The niacin also threw my thyroid way out of whack which could have something to do with it. Took prednisone (which made me feel great) for 8 months but had a lumbar fracture a year ago so had to quit. Still have the pain but take Advil and work through it. I have read that PMR could be a side effect of statin drugs and also immunizations. Maybe some of you got PMR after such an event. Hope you all get better soon. This is really a nasty thing to endure.

Finnbar Allen Posted 24/11/2009

@Sara et al Indeed, statins DO cause symptoms like PMR. Though the drug companies report a very low incidence it is actually over 40 per cent, based on their own pre-testing data. Co-enzyme Q-10 helps. Take 100 - 300 mg/day to see if it helps your symptoms. In fact it may help even if you are not on a statin - it certainly won't harm you.

dave johnson Posted 29/11/2009

I was just diagnosed, and there is no way I'm taking steroids for any longer than absolutely necessary! Is there a blog where I can converse with others?? Dave

Becky Posted 09/12/2009

Hi everyone. Just read all of the comments and wanted to recommend Homeopathy as a natural alternative. If you aren't familiar with the field, it is basically a holistic (whole-body) approach to treating illness with medicine derived from natural substances. The remedy will be different for each person because it is a very individualized system. And it is amazing! The National Center for Homeopathy (online site) has good info. The first visits can be pricey but the effects are long lasting and definitely worth avoiding the effects of steroids. I've seen it work wonders. Good luck!

pigen Posted 10/12/2009

I last posted 30/09/09 and I have been more or less painfree since. There seem to a lot of interest in vit. D, or rather the effect of vit D defiency. Have a look on dr Briffa's blog. Could high doses of vit D reduce muscular pain? I am certainly going to boost my vit. D intake esp. during the winter months.

 Posted 18/12/2009

greg Posted 28/01/2010

i am 56 years old and my passion is kayak racing (I compete in age group category and won medal at world champs in Perth)and was training 6 days a week(mostly on the water supplemented by regular gym sessions and crosstraining on a mountain bike.contracted PMR and am on Prednisone-down now to 25mg per day-somedays cant lift my arms or even dress my self without help-how hard can i train on my good days(sometimes even though my shoulders are not too bad i cant get out of my kayak without help)-is it safe to push my pulse rate up?on those days?will physio help

Dad aged 77 Posted 05/02/2010

Diagnosed yesterday with PMR - had a shot and have been given 15mgs of Prednisone a day. Absolutely horrified to read the problems on this page. Has anyone else started on Prednisone and then immediately decided to tell the Docs that they would quit Prednisone and try alternative medicines? It sounds as though this is the route to take IF POSSIBLE. My sympathies to all fellow sufferers and a speedy return to good health again.

HJC Posted 07/02/2010

Hi, I'm 40 years young and I too have developed the same symptoms that have been commonly described above and have been working with this dis-ease for nearly 4 months now. I am a reiki master and an energy medicine practitioner, I am throwing everything in my toolbox at this - I do not subscribe to chemical pain suppression as a treatment as the dis-ease is still present underneath. Whilst inconclusive - I have found that my symptoms are as a result of my body telling me (stopping me) from doing something that I should not be doing! For a natural alternative and some very effective relief - Check out Donna Eden's Energy Medicine website and keep taking the vitamin supplements / Drinking plenty of water! So far I'm keeping it at bay with flare ups now being infrequent. I'm listening to my body and reacting accordingly in terms of the work / rest / therapy regime - Whilst I cannot give any direct treatment strategies here - I can recommend continuing your search for "alternative" solutions which are out here - Long term steroidial suppression is realy not the answer for me - Let's accept it - We've got medical science baffled! I wish you all well on your journey....

susan buckingham Posted 09/02/2010

PatL Posted 02/03/2010

Diagnosed with PMR in Aug of 2009-it came on suddenly with excruciating pain down my arms and tops of my thighs. Started on 15 mg of prednisone...now down to 2.5 mg and then off completely in another 3 weeks....Some of my stiffness and achiness has returned but I want off the prednisone...take some Ibuprofen before bed and that seems to help...but don't want to do that every nite...don't like taking meds....trying to drink more H2O and eliminate sugar and caffeine....keeping active during the day helps and am walking more now... Will look into the Devils Claw and other items mentioned on this site. Don't know anyone around me that suffers from this...none of my friends or family at this point. Always have been healthy and my blood work is perfect except for a slightly elevated Sed rate....take Calcium and Vitamin D...try to get some sun every day...(I live in Arizona...so thats not too difficult)... gets very frustrating sometimes but after reading this sites comments ...I think I must have a mild case...as I hurt in the Am when I get up...or sit too long...but don't have any problems doing stuff during the day (other than some minor aches).....hopefully this will end soon..although I am not counting on it...seems like it lasts longer than a year or so from reading the comments. Keep strong and I am not going to let this get me....I am 63, otherwise in great health and have a lot to look forward to.....

Margaret Posted 09/03/2010

I developed PMR in June 1008, a week after food poisoning at a local restaurant. Suffered with severe pain for almost three months before correct diagnosis. Treated with Paracetamol and Arthrotec, which would wear off by morning. By then I was paralyzed with pain and couldn't get out of bed until next dose of pain relief took effect. Started on 15mg Prednisolone which took a week to take effect before relief from the pain. Tapered to 2mg a day, then got Swine Flu, which triggered a relapse of PMR. Back onto 10mg tapered weekly to 4mg. then got the UK winter cold and cough in Jan 1010. Relapse, and back to 10mg, tapering 1mg a week. But now so unwell the Doctor has sent me for blood tests - cortisol, thyroid, ferritin, glucose, full count etc. Results later this week. I take calcium with Vit D, Vit A, Vit B complex, eat good healthy food, but would like to find alternatives to the Prednisolone, and am considering consulting a Naturopath.

GRACE Posted 13/03/2010

PMR hit me hard on july 2009, I got our of bed in the morning and could not walk well with hard pain in thigh, butt, also left shoulder, neck, also felt like i had the flu all over body aches, upset stomache, fever for bout 3 weeks, I finally went to my doctor who ran tests and confirmed the polymyalgia.

I have not taken steriods, scared to them, so just take insaids...800mg if needed on a bad days.. I just went to a natura path yesterday who told me that I must detoxify my system in order for the PMR to leave. I have just started the detox today. I don't know if they will work but he insist that it will do the job. I usually dont believe in these kinds of fix's but I am so tired of the pain....here they are....4 things to take...antitoxidants, resveratrol...vitamin c...coQ10...beta-1,3/1,6-d-glucan........ double the dose for one week then follow amounts on the bottle. I hope and pray that this could be a help for all of us who are suffering this pain. Good luck to all of you.

 Posted 14/03/2010

Valerie Posted 20/03/2010

I woke one morning in November 2009 to discover I had become a reluctant member of this illustrious club. The final diagnosis was three weeks ago but strange to say my ESR is showing normal. However, as human’s do not fit into regular moulds one has to question ‘normal’. My GP mentioned steroids but I politely declined. However, he did not recommend them because of the known side effects.

At present I am on a cocktail of homeopathic tinctures and natural supplements together with Devil’s Claw. It does help but like all of us I am never real without some discomfort. The confining stiffness is a ‘pain in the rump’ – and yes I quite literally have that as well. Up until now a fully functioning 71 with a life-time of good health and independence the arrival of this compliant is a real bummer; and the sooner someone takes on the research to find a better treatment for all suffers cannot come too soon.

Jan Collins Posted 24/03/2010

Diagnosed PMR Dec 05 after 1 yr of supposedly Fibromyalgia. Been on Prednisolne various levels as relapsed many times. Now off for the last 5 months and pain coming back with a vengeance. Bloods ok ESR 9. Now trying Bee Pollen, Royal Jelly and Omegas, plus Co-codermol. I am also on statins!! At 66 and a busy person I find this PMR just eating away at my life. No one seems to have a clue and told to look on internet. This is 2010...someone must have an idea.

Anne Caton Posted 05/04/2010

I am 58 years old, have been on Prednisone for 18 months. I am somewhat stable on 5 mg of prednisone daily but many days I feel that I need more, just to be able to function at my job and in my personal life. I am desperate to be at a better level with this pain. lately I have started with Carpal Tunnel sx in both wrists. my hands and shoulders feel as bad as they did when I was first diagnosed. I am going to try supplements and see if I can get more relief. It was good to read the testimonials from others as I can only describe myself as "toxic" and the quality of my life has changed so dramatically that I am having a great deal of difficulty accepting this condition and am becoming depressed. I have not been able to wean down by even 1/2 mg on the prednisone since last September....multiple failed attempts...I am also on statins and tried stopping for several months and had some slight improvement in leg muscle pain.

Eve Eldridge Posted 08/04/2010

I am 72 y.o who was diagnosed with PMR about 3 years ago. After having lived a very active life, the pain and weakness turned my life upside down. Like others, I started on 20 mg of Prednisone and felt like my life had been returned to me. However, I had difficulty getting below 13 mg a day and after a relapse had to start all over. I maintained on 15 mg a day for about 1 year. After trying to reduce it many times, I finally just decided to bite the bullet and get off the prednisone as other problems began to appear. I have now been diagnosed with Cushing's Syndrome. The worst part now is not the pain (although it is still there) it is the extreme muscle atrophy which has made it almost impossible to take care of my usual tasks. I now have to stay on 5 mg day and give my adrenals a chance to renew themselves. It is very debilitating. I am going to pursue some of these natural approaches that I've read here. I hope they work for all of us.

Susie Holladay Posted 08/04/2010

I am 64 years old and was diagnosed with PMR Sept. 1, 2009. My pain was severe and I could hardly walk, plus I hurt from head to foot. I was so fatigued I could hardly do anything. My skin was also very sensitive to the touch. My SID came back at 86 and the red blood cells were enlarged. Though I hated the thought I started taking 40mg of prednisone. After two days my condition was dramatically improved and I felt like a new person. The next SID came back 2. Then the dosage was changed to 30mg for two weeks after which the dosage was dropped to 25mg for two weeks then 20mg for two weeks, 15mg for two weeks, 10mg for two weeks, then 5mg for two week. At this point I began to have a little pain in my shoulders. Aspirin helped this. In the last phase of treatment I took 2.5mg for two weeks. My pain had increased but not to the point aspirin couldn't help. At this point I stopped taking the medication, on my own, all together. After a month I had another SID test which came back 9. As of today I can tell my symptoms are worsening and I am searching as hard as I can to come up with an alternative treatment. I am changing my diet eliminating coffee, artificial sweetners (which I have come to believe are lethal). I am now eating more salads (the lettuce growers should really love me), fresh fruit and vegetables, soy milk, grains and cereals, etc. and lots of herbal teas. Also I've been looking into supplements and I take B vitamins, and have just ordered some MSM in powder and in capsule form hoping to boost my immune system, since PMR is a breakdown of the immune system. Hope it helps. Also trying to do moderate exercise such as walking, flower gardening etc. I had been coloring my hair for many years with harsh chemical colorants. Finally after years of abuse my hair started breaking off and thinning to the point I began to fear a wig was in my future! I started checking on this and found out that the chemicals in some hair dyes can affect the immune system! I also found a better way to color my hair with no damage and my hair is growing out again and the color is better than it's been in years using natural ingredients! That totally changed the way I thought about what we are doing to our bodies with the things we put on and in our bodies. It was encouraging to find others seeking a better way. Maybe together we can do it!

michelle mw Posted 13/04/2010

I have had PMR for 2yrs now, and have used NSAID avoiding steroids. I am about to start following the advise posted online by Healthier life. My question is if vitamin supp supporting the adrenal glands is the principal treatment does this imply poor adrenal function with PMR, or is this just boosted to enhance natural hormone production instead of using steroids?

Angelina Posted 17/04/2010

Numerous medical journal articles say that Vitamin D3 (cholecalciferol) may be helpful in relieving autoimmune disease. Vitamin D is involved in so much more than bone and muscle health. The Daily Value or Recommended Daily Allowance of 400 i.u. for Vitamin D is far, far too low and many physicians are prescribing 5,000 i.u. of D3 per day. (Vitamin D2 from fish oil is not recommended as it is much less effective.) A PMR sufferer who wants to get off steroids could consider taking D3 with beta-carotene (because vitamins A and D should be taken TOGETHER to prevent toxicity). Another substance which does wonderful things for the immune system is IODINE! Most people are deficient in it! There's a yahoo! group for people who are using iodine or who want to know more. All this information can be checked through Google. Good luck and God bless.

Brenda Posted 20/04/2010

I was diagnoised with PMR in March 2006, Prescribed prednisolone, started on 30mg a day. Finally came off them after 2 years 4months. Life was great and then all hell let loose. Went back up to 30 mg and gradually cme down again. I am now stuck on 4mg with an esr of 27. This has been for the last 6 months. I have put on 3 stone in weight. I wish some one would wave a magic wand.

Helen in Australia Posted 22/04/2010

Hi, I'm 53 and had it diagnosed last year. Many of the stories seem familiar but my particular twist was that I went to the GP about some kind of non-urgent and just indulged in a bit of a whinge about HOW PAINFUL my body is b/c of menopause, but that's natural, right?!? She said no, it's not! and referred me to the rheumatologist! I started off on a much lower dose of Prednisolone - 10 mg per day, divided into 2 doses of 5 mg - I'm a bit shocked to read of some of the doses here. But everyone here seems to know about the taper-off-then-find your ideal dose system that the rheumies give you, so I guess those high doses are necessary in some cases? I've just tapered off to 2 mg per day and had symptoms return, so went back to 5 mg, now feeling fairly OK. I've seen comments here saying you prolong the illness by going under the minimal dose. Can anyone give more details on that?

Carole in NC Posted 24/04/2010

Have had PMR for two years and got it after getting several vaccinations at once. Currently am on 2mg of prednisone (was doing alright on 3, but am trying to get off of it). I, too, led an active life, walking 3 miles daily and was and still am fit. Am surprised at how many of us are big into exercise. I am now 59 and can walk two miles per day. Will try Devil's Claw and some of the other natural remedies, but my rheumatologist scoffs at these. He says I should eat what I want and take prednisone and not worry. At least once I got down from 5 mg my face started to lose the moonface look. Since steroids make me overwhelmingly sleeply at times, and since I wasn't sleepy much at all once I got down to 3mg, I decided not to cut down to two until I started having those sleepy symptoms. Have only been on 2mg for five days, and yes, I am a bit more sore than usual, but hope to stick this out for about 4 months and see if I can maintain my daily routine. Good luck to all, and please do post once you feel better. We all need to year some good news! I guess there are worse diseases, but this one pretty much sucks.

Lynn in England Posted 26/04/2010

I am 51 and have just been told I have PMR, it came on very suddenly, woke up with painful neck/shoulders thought i had "slept wrong" after spreading to elbows,knees and even ankles i was in agony and went to docs he did blood test and said PMR, i was put straight on 40mg of Prednisolone and within hours felt better but have been told i could be on them for 18months-2years, and am terrified of side effects, really want to stop the steroids and get herbal alternitives, will deffiently be looking into what i have read thanks.

Kaen Posted 07/05/2010

I am glad to read about the natural remedies. I was diagnosed with Temporal Artiritis and PMR in January after I had a clot in my temporal artery. I have been in pain for several years and to the doctors many times and never diagnosed. I was put on 60 mg of Prednisone and now down to 20 mg per day. I have put on 20 lbs and very moon faced and hot flashes. I have been researching diet and will add the supplements others have listed above. I too want off of the Prednisone. I hate looking like I do now and was down to 17.5 mg a day and started having severe pain again. Drs. really don't have any concrete answers.

Karen Posted 07/05/2010

I am 55, January this year diagnosed with Temporal Artiritis and PMR. Had clot in temporal artery. Put on 60 mg of prednisone. Now going into my 5th month of this. Had dose lowered to 17.5 mg per day and severe symptoms returned after 3rd week. Put back on 20 mg per day. Feel pretty good however I have put on 20 lbs and very much a moon face. I want off of this but the Doctors don't offer much hope. I am looking for diet changes and natural remedies. Thanks for the input.

Celia Posted 12/05/2010

My 79 yr old mother Celia was diagnosed with PMR and TA a couple of years ago but unfortunately she lost the sight in one eye. She has experienced all the stuff described here..initial cure with prednisalone then subsequent problems on withdrawel etc. She is also on the usual Simvastatin anti cholesterol stuff too. I've read the above comments and would say the following: 1. Medicine, although 'science' seems unwilling to acknowledge that it has no cure and merely continues to hide behind clever explanations without advising on simple suggestions based on people's experiences e.g. above.

Look at Gramlovax tabs, magnesium, B5 B6 vit D3 (better than D2) + betacaratine + IODINE Diatomaceous earth (DA)..for leg pains.. CoQ10, beta 1.3/1.6, Glucan.

Pinapple (anti-inflammatory) tab form..Bromelaine/Bromeline 200mg daily. Check out fighting chronic mouth inflammation..Anti TMF (tumour necrotic factor) and dental hygeine/cleaning etc to get rid of sources of inflammation that TRIGGERS further inflammation....drinking GREEN TEA (7 cups +) which fights inflammation due to C reactive Protein (CRP) fibinogen and cholesterol.

The battle is to get rid of inflammation and generate natural stuff that enables the avoidance of steroids (Prednisalone) and the kick starting of natural inti-inflammatories i.e. a new lifestyle where the above stuff is the medication. You will have to study, take notes and think as much about what your body doesnt need as much as about what it does need. This is virtually a holy war where everyone is slightly different and has to work out what works best for them carried out in their body temple. Give up eating junk which includes stuff eaten for fuel/pleasure only unless it aids anti-inflammation...loose weight, exercise gently (start by getting out of breath at least once daily), clean your teeth as many times as you like...every coupla hours...why not? (get rid of junk food that promotes inflammation). Share your experience for others on sites like this.

dikod Posted 12/05/2010

testing

arleen cullen Posted 20/05/2010

First I thank my son for finding this site. Just turned 70. Diagnosed with PMR June 07. Dr. started me on Prednisone shot 80mg. Felt great for two days. Then it came back with a vengence. More blood test discovered I had Multiple Myeloma. After second opinion went on chemotherapy and 20 mg of dexamethasone. I have also been diagnosed with diabetes, which they say is from the steroid.Also have been suffering with Adema for over a year. Dex is a very very strong steroid and now my Dr. is trying to wean me off it. I am down to 5mg. This disease has caused other diseases that I never had. Depression is creeping in, but I am trying to push thru it. I pray daily for a cure and pray for all that have to deal with this miserable PMR on a daily basis. God bless all of us.

Julia Posted 20/05/2010

Diagnosed PMR July 2009 - Prednisone started 20Mg daily - I hate the not being able to move without pain. Found Magnesium an instant hit. Down to 4mg now but when I went to 3 ESR shot up. But I can tell pretty easily when the test will be higher from having good days (with less pain) to days when standing up hurts. My doctor says stress not a factor!!!! I am off to the chemist today as need more magnesium - Have been a very fit person - was 54 years old -have titanium inside me - injured shoulder before onset - sounds like I had all precursors. Will try Green Lip Mussell - Doctor has me on Melorex to help inflammation but herein NZ very expensive. Good luck to me and to all with this foul disease.

Carole Posted 03/06/2010

Well when I last posted I had been on 2mg of prednisone for 5 days, and now it's over a month and I am doing better. I think it takes my body at least 6 weeks to respond well to the drop in prednisone. Have had PMR for 2+ years, but it feels like the slow reduction of prednisone is the way to go. It allows my body to slowly ramp up its own production of cortisol. I suppose all bodies are different, but am wondering if what some folks experience as a "relapse" or "flareup" is really just the body's reaction to the reduction in steroids. When I first reduce it, I am fine for a week, then I am sore again, have trouble getting out of chairs, and feel miserable for two weeks +. Then a week later I notice, that, hey, I can get up out of a chair without pushing off with my arms. So that means I can probably cut back again soon, go through the same cycle, etc. Am going for accupuncture next week as a way to help my body handle the pain. It does seem that when I take vitamins (a general one) I feel better next day or two. And I take fish oil and tumeric and occasionally bromelein (pineapple extract) which does seem to help, temporarily. Best wishes to all.

Brenda2 Posted 24/06/2010

Like many posters here, I was very active and in my late 50s when I got PMR overnight. I was suddenly 30 years older and yes it's very depressing--like having your life suddenly stolen.

Started on 20 mg of prednisone, which took away pain but leaves me extremely fatigued. Tapered to 15 mg after two weeks -- went fine, but trying 10 mg after another month didn't work.

I'm wondering about such things as zyflamend and resveratrol--both made by New Chapter. Does anyone have experience with these and PMR and prednisone.

If there are no dangers in combining these, I'm hoping it will speed up the weaning off of prednisone.

Jill Posted 16/07/2010

Just diagnosed with PMR 3 weeks ago, and i don't want to be taking predisone so i'm looking for any information anyone might have on how to naturally fight the disease. And any books that would be of some help as well.

Denise Posted 28/07/2010

I am 37 and was diagnosed with PMR at 36. My doctor stated that he had never heard of anyone having PMR at that age but after all the tests/visits that is the only thing that could be confirmed. I was initially started on a high dose of prednisone and am currently being weaned down and my symptoms are coming back. I have not had a significant amount of weight gain. I am going to try Devils Claw and see how that works.

Sonja Posted 29/09/2010

My dad is 78 and has always been in excellent health, athletically fit, and strong. His doctor perscribed Lipitor for his slightly raised cholesterol... big mistake. My dad got hit with all the aches and pains in his shoulders, neck, arms and couldn't sleep. Took forever to diagnose the PMR. He talked to people in the neighborhood and there were 8 cases of statins leading to severe pain, most people got of the statin right away I guess my dad waited too long and ended up with the PMR. My dad also gets regular flu shots and has for many years so I don't know if that has anything to do with it. THe doctor put him on 15 mg predinisone in February and now he's down to 5mg. We are worried about the long term effects of steroids. This site and all of your posts have been a big help. We are going to try the devils claw, MSM, calcium, magnesium, vitamins b5, b6, d, a, c, and omega 3/6,. We also will be looking up all the other thing that were listed and see what's what. Thanks for all the help and if you know anyone on statins get them off!!! Thanks to Anne and Pigen and those who posted their continues progress it really helps.

August H. Rehmus Posted 23/10/2010

Been on prednison for 91/2 years. Difficulty in walking in the morning and late at night, muscle soreness in buttocks back of thighs and feet. I am taking a product called Rheunofax, hope it will help, comes from Australia. I am desperate from the constant pain and difficulty in walking.

Lesly Posted 01/11/2010

Hi there, I am looking for a surgeon for my sister who has suffered from Polymyalgia Rheumatica, so she can get operated to repair her hands and feet. Any recommendation? Thank you Lesly

Lesly Posted 01/11/2010

Hi there, I am looking for a surgeon for my sister who has suffered from Polymyalgia Rheumatica, so she can get operated to repair her hands and feet. Any recommendation? Thank you Lesly

Mick O'Neill Posted 01/11/2010

At age 54, just before last Christmas I sprained my ankle, was wrongly diagnosed as a fracture and spend Christmas in plaster. Using crutches became inexplicably painful. One morning I awoke with immense pain. Could not move anything save lift my head slightly. Had to be carried to the loo! Misdiagnosis continued for 4 excrutiating days before PMR diagnosed and the "magic" steroids prescribed. Devils Claw plus other vits and herbs have helped but not in a major way. My intuition is that my body is feeding back to me that it has been poisoned by modern life/diet. Have started meditation and Tai Chi which help. Most startling though was eating a raw, organic, vegan diet (otherwise known as the living diet) for a couple of weeks. This though is no easy cure! It is very tough regime to adopt, as the body fights back with powerful cravings for the previous diet. I will perservere though as I'm told that eventually it will become a habit. Will report back later! Good luck and my prayers for a pain free future for us all.

Kaye  Posted 06/12/2010

My PMR symptoms started prior to an anurysm at the end of March this year, which I survived following surgery! the undiagnosed PMR symptons disapeared for a few months and then came back with vengance and I was started on Prednisolone about 2-3 months ago, Im on 5 mgs a day and have been told to reduce by 1mg a month. I have not gained weight yet but am really strict with myself and my diet. I am only 46, to be honest having nearly died this year already I feel ok about the PMR as I am able to lead a completely normal life and am reducing the drugs. I have taken up horse riding recently and am generally enjoying life! I hope those of you who are suffering find some release from it.

Trevor Smith Posted 06/12/2010

So if I take pantethine omega-3 omega-6 vitamin C vitamin B6 vitamin A vitamin D bromelain & MSM all at the same time will it end my pain from PMR, or kill me?

Valerie Posted 11/12/2010

Hi all. I am a (previously very fit) 60 year woman, and was diagnosed PMR a five weeks ago after several months of doctors and physios baffling with what I had got. Was prescribed 20mg of the 'magic' prednisone imediately which cured all my symptoms, and made me feel on top of the world. Since then, my dose was dropped to 15mg, and for a week now I have been on 10mg a day. Still feeling very good in myself, but the last couple of days I have had niggling pain return in one of my upper arms and in my neck. I am just hoping and praying this is not the start of the return of the symptoms. Doctor has also prescribed me vitamin suppliments, and Alendronic Acid tablets which I take once a week to counteract any possible thinning of the bones. Good luck to all who are fighting this horrible condition.

Russell Posted 14/12/2010

Hello, I've had PMR for a few years. Recently I had a severe flareup and devised the following exercises for myself. I do them slowly while lying down or sitting on the edge of the bed. Otherwise I wouldn't be able to overcome the stiffness and pain when I wake. They are particularly focused on the hips, shoulders and neck.  Stretching Exercises On Back on Bed: Massage muscles in arms, shoulders, neck and chest. Pull knees to chest together and separately. Do 'Bridges' - bring feet back to buttocks and raise buttocks off the mattress as high as comfortable. Develop your own routine as to whether you maintain the 'bridge' for a time or do the exercise repeatedly, up and down. Same with all the others: do the number of repetitions that are comfortable to you. Knee shaking and/or bicycling. Legs splayed and moved in slow circles during shaking. Hands over heads for counter balance. Lumbar torsion and stretching by careful leg drops over opposite side. Use arm on same side for counter balance by extending it in opposite direction. A little more bicycling or leg shaking (knees). Sitting On Edge Of Bed: Calf stretching, edge of bed. Heels on floor at 90 degree angle to each other. Push knees down and to the sides gently then more rapidly. Then shake out ankles. Neck rolls. Shoulder rolls. Lean forward and do elephant trunk arm swinging to warm up back muscles. Lean opposite elbow on bed for support. Stretching large muscle groups of back by holding knee with same (straight) arm, leaning to opposite side and pushing inwards (to center line) with knee. Support yourself with opposite elbow on surface of bed. Do opposite side. Also lean forward and back while doing this. Place same hand on opposite knee and push to shift from one side to the other or to raise yourself up. Stretch muscles in lower back by leaning forward as far as comfortable without pain and gently bounce forward and back. Can wrap hands around ankles and pull, too. Arm and shoulder movements: (All hand and elbow movements go through center line. Center line is the point in front of your nose where your elbow reaches when it is placed horizontally in front of your face.) Vertical arm swings combined with Horizontal arm swings with elbow swings out to sides in descending manner (close fists lightly), More vertical arm swings (concentrate on palms through center line), Combine vertical and horizontal palm swings through center line alternating arms, Horizontal elbow swings through center line combined with arm swings with palms facing outward and hands in claw shape, Combine all the above in flowing, changing movements, Finish off with original horizontal arm swings with elbow swings out to sides in descending manner. Standing: Calf stretches while leaning against wall or dresser top. Rocking motion back and forth after taking one stride with one foot. Later in the day..... abdominal rolls, first down and under and then up and over with ten or more minutes rest between.

Donald NZ. Posted 17/12/2010

I am 65 yrs old. male .I have been diagnosed PMR a month ago after a recient return from the Northern summer into our (New Zealand) cold wet winter .I didnt know what struck me..I had severe mussell pains up both sides of my uper neck muscles-pain along the top of shoulders and down the upper arms.( I thought it was angian) It then spread to my hips and tops of my thighs..front of my chest muscles and ovrer my shoulder blades.It is very uncomfortable and almost debliitating..I am on 15mgs of the Predisone daily.and I also take Panadol for the pain..I am now looking at asny alternatives (natural health products) I am taking Devils Claw-Malic Acid-Boswellia-Magnesium.Also plenty of Cod Liver oil Vit A+D+E. Getting through the day OK..Just have to push through the pain some times..I want to drop off the Presidone over the next 2 months..I am pleased i have found this site to help share ideas..keep our hopes up..Its a tough one to get in our 60's..good luck to all...I will post again soon. Don.

florence marian Posted 03/01/2011

i started with this horrible pmr 3 years ago...am stil on 5 mg prednisolone daily i hate taking it , as do you all!!! oh please let someone tell us how to be cured....

Philip.A.Carter Posted 09/01/2011

I began suffering from severe pain in thighs and upper arms around start of October 2010.At first it was thought to be arthritis - I was fobbed of by my G.P. and told to take pain-killers. After six weeks I was diagnosed with polymyalgia rheumatica. I take predisolone steroids 15 mg daily. They provide some relief of the discomfort. I hate this condition and hope that- with time -I will improve--- but the question is --- How much time? I wouldlove to hear about natural remedies or advice of lifestyle which may help recovery.

Jenny Posted 13/01/2011

I also have been diagnosed with PMR - prescribed the dreaded steriods, which I confess I didn't know much about. They don't treat the problem only suppress it. I have taken a course of Vitamins for a month - now off steriods and progressing. Exercise is paramount in my daily routine. Don't let any doc prescribe steriods - a year for me was a year too long. I did have bad days but held in there and finally feel so good. Am aware I may have bad days but I have so much energy now - making up for lost 12 months. Thank goodness for Naturepath

Laurel Posted 14/01/2011

I have PMR symptoms but the doc said "slight fibromyalgia". They are different. I have "mirrored pain" in my shoulders, back of legs, muscles in groin area. I am Vit D2 deficient and am on a high strength VitD 2x p/wk. I'm wondering what your "course of Vitamins" has been. Have heard to follow "The Vitamin D Cure" by Dr James Dowd. I haven't gone that route yet. I currently take 2 Ibuprofen 1 to 2 times p/day. I go for acupuncture 1 time per week. If you would share your course of Vitamins that would be great. Or maybe point me in the direction of a great naturopath.

Donald NZ Posted 15/01/2011

I have been on 60mgs predisone for 1 week and it did nothing so am on 60mgs morning and I take another 20mgs at night (8pm)..this has been a big improvement..at last I get through the night ok..still havr some pains and in lower back is sore all the time..I dont know how long I will be on predisone but as of now I dont have any bad side effects..Predisone is not all bad..but I would love to be free of it sooner than later..

Donald nz Posted 22/01/2011

Trying a new to me treatment called Scenar-you should all look at this wonderful treatment..Investigated the use of Scenar and Enar, particularly in the area of chronic neck pain, I was so impressed with the results and my personal experiences, Drugless Therapy to the Pain Relief... give it a try

brad Posted 24/01/2011

HI my name is brad aged 47 Adelaide Australia the symtoms of PR are so similar in statin induced myalgia that surely there must be a connection! I ahve suffered now for 2 1/2 years with terrible muscle pain weakness and inflamation, have been concidering going on preisone but after reading all above having second thoughts although the thought of not having pain for eevn a little period of time is very hard to refuse!!! i would suggest however that everyone posting above be very aware of the dangers of statins and the incredible similarity in symtoms (p.s doctors dont want to admit the statin connection) but you can easily see what i and many others have gone through with this medication by just searching statin side affects forums ect. I think i may have a look at some of the suggestions i have found here such as devils claw zyflamend ect I wish you all a happier and healthier new year Brad

bea Posted 29/01/2011

am finding it very difficult coping with PMR and GCA as i have COPD also and the steroids are creating fluid which my lungs cannot cope with. I could manage my breathing difficulty quite well before this diagnosis,taking just 3mg of pred a day for my lung condition. Am on 30mg pred daily now, after being on 50 for some weeks. I had biopsy for GCA just before Christmas and it really drained me. Is there anyone else who has lung problems and needs mega doses of steroids for another complaint?

Andy Posted 29/01/2011

Hello from 56 yo male in Iowa, USA, I appreciate the variety of stories so much, I will contribute mine. Nothing special, but maybe it will help someone. I have had a nagging hip pain for a couple years, ladder work made it worse. Then 14 months ago I woke with sore shoulders and hips, like sore muscles afer a severe workout. 'Cept I had only been doing computer work. I took the Google suggested PMR symptoms to the Dr. who ran tests(elevated SED & PMR) to confirm PMR, placed me on 15 mg prednisone, which provided immediate releif. Tried to taper to 2 mg over a year but, recently sore sholders came back with a vengence. Did Nautilus exercise machines to loosen shoulders which worked till one day severe soreness curtailed any shoulder exercise. Sleep is interrupted each time I turn onto a sore shoulder. Swimming has all the while been a nice temporary relief, but just for a couple hours. So now, after reading anecdotal web stories and discussin with my pharmacist, I am adjusting slowly up, starting with 2.5 mg each AM & PM. Wish me luck....and good luck to you!

Donald Boese Posted 30/01/2011

Important...anyone with this dreaded condition Polymialgia R should check on their blood pressure meds if they are taking them...if you are taking any beta blockers get off them asap..I am on Enalapril Side Effects are= Musculoskeletal= when using Enalapril/Felodipine: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); breast changes; changes in sexual function; chest pain; dry mouth; fainting; fast, slow, or irregular heartbeat; hoarseness; infection (fever, sore throat); infrequent urination; lethargy; muscle pain or cramps; muscle weakness; restlessness; thirst; unusual stomach pain; unusual swelling; weakness; yellowing of the skin or eyes. Musculoskeletal complaints have included severe arthralgias and myalgias which have rarely been associated with some ACE inhibitors, including enalapril. A 76-year-old woman with hypertension, on enalapril monotherapy for three weeks, developed progressive myalgias, asthenia, morning stiffness, and weakness associated with no abnormal laboratory values. Due to the absence of other apparent causes, enalapril was discontinued, and the patient's myalgias disappeared. In at least one other case, rechallenge resulted in recurrent symptoms. I am now suffering huge muscle spasms..and have managed to get down to 10mgs enalapril (was 20mgs a day) no more muscel spasms..still cramps lower back..I have never been warned abiut these side effects by my doctor.

Susan Posted 18/02/2011

Had my first bout about 20 yrs ago at age 45. One week on prednisone & I was OK until now. Back on prednisone & looking for homeopathic way to keep disease in check.

Cathy Guhl Posted 21/02/2011

I came down with PMR 12 years ago, went to my dr. and she did not give me any diagnosis. At the time I wasn't even 40 yrs. old. Since I did not have any diagnosis, I was not prescribed any meds. (Thankfully). I suffered through and it lasted at least 1 yr. Only when a friend of my mother's complained of the same symptoms, did I finally discover what I had. I know have just come down with another, milder, case of PMR. Hope to find a natural remedy. I also have Giant Cell Art.

Tanya Maihi Posted 23/02/2011

PMR crept up quick about 5 mths ago and I knew I hadn't overdone the gardening but the Dr prescribed 8OO-16OO brufen and panadol. Brufen helped a little until a friend gave me some diclophenac (? spelling) and 15Oml at one time a day was great until it stuffed my liver, so now I have a sensitive liver and cannot take anti-inflams again. Won't start steroids and now with only codeine and paracetemol the pain is back and I'm in agony but won't give up on trying to find a healthy non-steroid option. I've never been sick before in my life (51yr old) and I've never felt such pain as PMR!

Suzanne Posted 27/02/2011

I have been feeling unwell for around 7 months now. Did not know what has been wrong with me and the only thing I could say is at night is my living nightmare. (groundhog day) I can cope with the pain during the day after I have managed to get out of my bed. (with assistance from my partner) The pain when you stop moving is really bad. I have been reading up on PMR and I have came to the conclusion that this is my problem. Oh my god it is not good reading. I have been attending the doctors and now at the hospital and I am still a ? of what is wrong with me. Tests test and more tests but no answers. I am now going to do my best to not go on steroids so no more caffeine, drink and going to get vitamins. I need my life back I have still got a lot of living to do. Age 45. Best wishes everyone out there.

Carol sanders Posted 02/03/2011

I have had pmr for two and a half years, and manage with 15-17 mg prednisterone. Now have developed really bad cystitis and thrush as a result of my immune system being surpressed. I am following a really strict anti candida diet, which together with vitamin supplements might help the pmr, but there is no support from medical profession so it is really hard. I got pmr just ten days after really bad dog bite right down to the bone and have read parvovirus can be a cause. Carol Sanders

jean corroll Posted 04/03/2011

Can I take vitamin C and B with steroids. Also can diet help to ease the pain of polymygia rheumatica.

Rachel Hall Posted 09/03/2011

I have had PMR for five years and have been having pred steriods to help symptoms. Now have sor eyes and flushed and tingly cheeks, does anyone else have these symptoms. Down to 5ml but pain again in wrist hands ankles legs back and shoulders. Going to to try devils claw next. There has to be something out there to help all of us without these side effects of pred.

Tony Cotton Posted 12/03/2011

This is to encourage active PMR sufferers. Age 73. Cyclist 10000 miles a year from 16 - 45. Marathon runner 2000 miles a year from 45 - 70. Over 100 marathons and 200 half- marathons. PMR struck at 70 - I could hardly get out of bed. Recommended medication 15mg Prednisolone now down to 6mg after a year. I began exercise in a gym a year ago - treadmill. rowing, cycling, etc. and outside exercise was walking, then hillwalking, jogging, back to running now 40 miles a week with long run of 10 miles in less than 90 minutes. I stay within sensible limits but careful not to overdo things. Strangely, I rarely get a cold and while my leg muscles often feel there is lactic acid present. They do not stop me running, of course!.

Ann Melocco Trenoweth Posted 13/03/2011

I have been taking prednisone for a year now. I am down to 7mgs per day but te pain is coming back. I do not want to increase the dose so will try some of the natural remedies above. I will let you know the results.

Sue Davies Posted 20/03/2011

I have had pmr for over 4 years. I have during this time been on predinisolene various doses but at the moment worse than ever. I have also been put on methotrexate which affected my liver function so have had to stop taking that. Am at wits end with it all but have been heartened by the posts on here and am going to try natural remedies.

shuswapmg Posted 23/03/2011

I was diagnosed with PMR when I was looking after my Mom when she had cancer. The stress of it brought it on. I just woke up with it one morning and it was a living hell of pain for 6 months until diagnosed by the rhuematologist. She put me on Prednisone right away and within 48 hours, it was completely gone. I realize there can be side effects to this drug, but my pain was gone completely and I felt like I had my life back again.....I felt like a 80 year old woman and I was 58. To me it was worth it and was weaned off of Prednisone after 2 years. I got a little puffy in the face, but that was about it......wasn't too noticeable and my bone density which was checked once weaned, was very good. I started with l0mg and went down from there after the 2 year period. Never, ever want this again. I am now 63 and so far so good. Good luck to everyone.

cp Posted 03/04/2011

get the best quality msm contact dr jacobs at the university of oregon research dept prednisone is deadly

Margaret Posted 20/04/2011

I last posted March 2010. Back onto 10 mg in August by a new doctor, tapering 1mg every 2 months. Have heard that yoga is good exercise for this condition as it does not drain energy like aerobic exercise. Am going to try that and also MSM, Devil's Claw and Bromelain, along with the other supplements I take, calcium, vitamin B complex, magnesium. Has anyone tried yoga for PMR?

Noni  Posted 11/05/2011

Diagnosed Feb 1st took pred. for 2 1/2 mo. started at 15mg. within 4 hrs all pain gone magic bullet Started to decrease right away. Good at 5mg some pain at 2 1/2 mg 1 1/4 useless, so quit! Very sore.Trying interavenous hydrogen peroxide and DMSO + B vitamins all in the mix. Some progress after 4 treatments. If this works, I'll let you know.Would be worth a bank loan to get rid of this!

Jae Posted 14/05/2011

I've had this condition for over a year now. Had to come off the pred to multi-side effects. I tapered down suffering horrendous mood swings and increase of pain at each reduction and have managed to get off them completely. I use different painkillers and find if I alternate them that this seems to help i.e. aspirin in the morning, ibubrofen during the day and co-codomol at night as it helps me sleep. The pain can be intense but is easier to cope with than the side-effects of the pred. Some of the pain was due to an aggravation by the inflammation of an old shoulder injury. The pain felt 'different' as if I had one pain on top of another, if that makes sense. This I had used acupuncture to treat so I went back to my acupuncturist and sought his advice. I had one treatment to see if this was the case and within 24hrs my shoulder pain had decreased quite considerably, as if a layer of pain had been removed. After chatting to him I decided to try this therapy for PMR pain relief and had my first session yesterday Pain increased at first but lessened next day. I'll keep you posted as to how it goes longer term.

Azaz Posted 14/06/2011

Been on Steroids for just over a year now and trying to get off them but pain comes back with every reduction in dose. Started on 15mg Pred, got down to 5mg but relapsed and went up to 10mg, now back down to 6mg and determined not to go up again. I'm disappointed that none of the comments here suggest that any natural remedies have done any good, apart from a non specific course of vitamins! Plenty of 'I'm going to try...' but no ones come back to say it worked! Have they just forgotten to come back with the good news for the rest of us????

Jean Robertson Posted 25/06/2011

So thankful to have found this website. Diagnosed with PMR in Apr/11 and started on Prednisone. Never heard of the disease before - now I search out all the info I can. Worst pain is in upper arms - I love to golf and swim and arms are useless. Legs and hips have come back but not arms. Will try devils claw and some of the other natural supplements. Will try anything!!!!! Good luck to all of you.

Michele Posted 27/06/2011

Developed all the excruciating symptoms of PMR two months after being T-boned by a motor home that ran a red light on the highway. Family Dr. had ESRs tested (kept going up) but was unable to diagnose problem. Rheumatologist I was sent to refused to believe PMR was the issue as I was only 46 yrs. old - finally begrudgingly "suspected" PMR based on symptoms and miraculous improvement on prednisone. Literature seems to suggest many people "recover" in a few years. I was on prednisone for 10 yrs. until the Dr. tapered me off of it completely - ...I still have PMR...as well as prednisone-induced osteoporosis in my hips and spine, gut problems, messed up thyroid, etc. The 50 lb. weight gain was a terrible emotional and physical burden...and the total gain has not yet been dropped (1 yr. since prednisone stopped). I didn't die in the accident, but frequently wish I had. It has been 11 yrs. of anguish and pain since that day. Also had a severe anaphylactic reaction to Celebrex prescribed to be taken to offset the pain associated with decreasing the prednisone. (Again, Dr.s didn't believe the symptoms I reported leading up to this - feeling faint, rash, shaking, nausea as I drove to work. Went to hospital several times before anaphyl. event and Dr.s diagnosed my problems as coming from a "drug overdose", morning heat (go home and have a cool drink!), job anxiety, female hormones...)...very frustrating!! Am currently on Cymbalta (for peripheral neuropathic pain) and Tylenol 3s for pain. These do next to nothing and my Dr. and rheumatologist have nothing more to offer (most of the meds. they have tried, I have severe reactions to). I'm investigating alternative treatments for PMR. Mild exercise and massage therapy help tone and relax muscles. Omega-3 and -6 are said to boost the immune system and have anti-inflammatory properties. Pantethine (600 mg /day) is supposed to boost the body's production of glucocorticoids & proper function of adrenal glands. Research online directs those seeking alternative treatments for PMR to find a Chinese herbalist as eastern medicine has a long history of effective use of herbal anti-pain, anti- inflamm. medicines. Yarrow and Meadowsweet are said to relieve inflamm. and muscle spasms (including digestive disorders). Am going to try and find a competent person to help me develop a well-guided treatment strategy and get a handle on managing the pain and discomfort that Western medicine doesn't seem able to address. Have been on disability leave from my job for the last 4 yrs. - weak muscles, pain & stiffness in neck, shoulders, back, hips, butt, legs, feet. What's worse than the loss of self-esteem and good income, is the disbelief of people that anything is "wrong". "You look good", they remark, "You're not back at work yet?!!!!!" No one but another PMR sufferer can understand the pain.

Michele Posted 27/06/2011

Forgot to mention in last post....My aunt on my Dad's side has recently been diagnosed with PMR. When I got it 11 yrs. ago (46 yrs.), no one in my family had ever heard of this condition. My aunt is in her early 70s (avg. age of PMR sufferers). Literature online stated there is a slight heredity factor assoct'd with PMR. I guess I would have developed it eventually without the car crash - but am convinced that, like cancer, something major is triggering it to manifest itself at younger ages (perhaps older ages too?).

Anne Posted 18/08/2011

This is a positive answer for Azaz, I last posted on 01/07/2009 and oct 2008. I suffered PMR and will never forget the pain, weakness and extreme fatigue. I had steroids for 6 weeks and was taken off due to liver blood results, I plodded on with diclofenac, naproxen and other nsaids until I heard about Devil's Claw and natural remedies. I had Devil's Claw, magnesium, zinc and vit B5(which boosts your own bodies steroids) I also introduced myself to mackeral, walnuts pineapple, these reduce inflammation, I tried healthy food! All these kept me pain free and the devils claw, i think is as good at reducing inflammation and pain as any old steroid. I would recommend devil's claw. However I do understand that what works for one may not be advisable to others especially if on medication for other things. Always check with doctor first as devils claw does reduce blood pressure and thin blood. A young doctor in rheumatology laughed when I told him I was improving on herbal remedies, I said 'you can laugh but I'm feeling better'. I truly believe in devil's claw it works wonders better than nasty steroids, please check it out, and best wishes.

Tara Posted 28/08/2011

My Mum is currently experiencing a major relapse of PMR. I've heard that diatomaceous earth can be used to treat PMR. Does anyone have anymore information?

Nancy Plotkin Posted 20/09/2011

I've had PMR for about a year and have had to reduce prednisone very slowly (sometimes as little as half a mg. every two weeks) in order to stay on top of the pain. I recently had a bad ankle break and throughout 2 months of surgery, recovery and rehab, my PMR symptoms completely disappeared, only to reappear this week. Doc says he's heard of such strange remissions and relapses and doesn't know why. Any thoughts on this subject?

T.Santangeli Posted 11/10/2011

I have had this problem for 4 years, each time I get down to 5mg steroids, I become very ill again. I was perfectly fit and active until I was put on statins and within weeks I couldn't even get into bed with pain. Statins can affect the muscles I have been told, so why isn't there more research into this.

Judy Posted 14/10/2011

I was diagnosed with PMR in Oct 2010. I am 58 yrs old, have been active my entire life, exercising a minimu of 3 times a week. Woke up one morning and was stiff and over the next 5 days got so much worse. Again like all of you was advised to go on prednisone. Having had someone close succumb to one of the side effects of this drug was completely against long term use. Went looking for alternate. Launched on a regimen of accupuncture, massage therapy, Vitamin B, B6 and calcium. It has now been a year and have improved immensely. Still have stiffness in the morning but can work through that, if I do too much or am overtired will feel the stiffness but have made huge strides since the start. Good luck everyone suffering from PMR as the road is long and lonely, as much as family and friends feel for you they truly do not understand it is not only physical but plays havic on your mental state and is difficult to push yourself on a daily basis.

Katie Posted 27/10/2011

I was diagnosed with PMR in September 2007 when I turned 60, and put on Prednisone and used it trying to decrease and finally got down to 5 mg. Recently I decided to get off Prednisone. Last summer I was diagnosed with Prednisone induced diabetes and also early onset of neuropathy (which is unheard of). Prednisone has many bad side effects. So I am taking Motrin for the pain now, and today started taking the B vitamins recommended for PMR and neuropathy. I have less pain than when it began, but do wake up with pain in my upper arms and stiffness in the neck, shoulders and legs. This is an improvement. I am determined to get rid of it altogether with God's help.

Lynn Posted 30/10/2011

Anyone have any experience using Malic Acid?

Elaine, Idaho, USA Posted 07/11/2011

Hi, wanted to share my experience with PMR. Same aches, pains, stiffness weakness, low grade fever,etc. Many Dr's, diagnosed with PMR and given a prescription for Prednisone. Knowing the side effects of that, I choose not to get the prescription filled. I went to an out of town Dr. who is an MD, but uses alternative medicines also. After spending much time listening to me and redoing my blood work, he felt I had a low grade infection causing the inflammation. He prescribed doxacycline (an antibiotic), food enzymes, bifadophyliss. I was also given an intravenous vitamin drip to boost my energy. Within 2 days of starting the antibiotic I stopped hurting from the hips down and continued to make improvement each day. I stayed on the antibiotic for 5 months and was able to stop. The Dr. said I could restart if the symptoms came back, and could actually take a maintenance dose forever if I needed it. It is now 7 years later, and I have not been bothered since. I am so grateful for the help and relief that I received. I pray the Lord will bless all of you to be able to find the relief you need and to be well again.

Sue H Posted 08/11/2011

Both my sister and I have PMR. My sister had Temporal Arteritis first. I haven't had TA or Giant Cell Arteritis. My sister is about to come off steroids that have controlled her PMR and TA. I can't take steroids, so was a bit stuck. The GP diagnosed the condition fairly quickly but was stuck for suggestions, so I worked out my own regime. To begin with, I took it easy then built up my daily routine slowly. As I already had Rheumatiod and Osteoarthrisis, I had already started to find alternative ways to manage daily life! I've no idea if what I was taking helped, but I added Devils Claw, Omega 3 and Valerian to my growing list of supplements. Three months after my diagnosis, the symptoms eased and other than a brief relapse, it's been managable. I do have prescription painkillers and wouldn't be without them. My sister has regular tests and the steroid dosage has been gradually reduced. She's had a couple of setbacks but fingers crossed will be off the meds by early next year. Seems as though there may be a heredity link with PMR

Kate M Posted 12/11/2011

I was on prednisone for four years, tapering slowly down. At about 1 1/2 years in, I ended up in the hospital for two weeks with a bowel perforation and subsequent colostomy (reversed four months later, fortunately). The surgeon suggested it was related to the prednisone, which was a side effect I had never seen in my research on PMR. During later visits to various doctors (unrelated reasons) over several years, I have been questioned about the scars, and the doctors always ask if I was taking steroids at the time. THEY KNOW THIS CONNECTION EXISTS but you have to look long and hard to find it yourself. Be very careful about long-term prednisone. I am terrified that my PMR will return and am collecting all of your good ideas for that possibility.

S.S. Posted 18/11/2011

Greetings, fellow sufferers. I am female, age 83, still working, active, capable & basically strong, though struggling with dreadful side effects of statin drugs (high doses of Lipitor & Zocor) plus more recent prednisone for PMR. I stopped statins 4 years ago, started pred. at PMR diagnosis 1 year ago at 30 mg. daily, now down to 5. Hope to be off it entirely soon, since I have experienced most of the nasty side effects of this medication, too. After coping with the expensive misery of the statins (so rewarding to drug companies!), this latest blow is infuriating. Overall comfort level not bad these days, but I cannot walk more than 2 city blocks without crippling pain in my legs. Since PMR diagnosis have taken CQ10, magnesium, potassium, fish oil, vitamins A, B12, C, and D3 daily. Will try adding devil's claw and report back to this forum. Good luck and blessings to you all.

Ahm Posted 04/12/2011

49 yrs old started on prednisone 20mg 3 weeks ago. Night time pain has mostly gone and can sleep now. Morning stiffness also gone. Just left with slight lower back discomfort but think that's a damage from a fall skiing. Start lowering the dose in two days time. Side effects weight gain yes and feeling hot at times. Cramp in arms when i work with those muscles. Father also has pmr with several relapses over 4 yrs. Interesting was my blood work never identified pmr but the steriods are working. Just left with the feeling like my body is fighting a virus all the time.

Kathleen, TN Posted 09/12/2011

My rheumatologist prescribed Prednisone as the only treatment for PMR, advising me that I would put on weight and would need to be monitored for osteoporosis, hypertension and diabetes, and prescribed alendronate for osteoporosis. I already had developed an esophageal ulcer from naproxen sodium, for which a GE prescribed omeprazole. These drugs made me horribly sick and caused severe gastro pain and distention. I have had just about every side effect that one can get from Prednisone, including vision pain and blurriness, skin rash and acne, irritability, sleeplessness, elevated blood pressure, tinitis, sweating and weight gain. The prednisone is killing me and I am weaning off this drug asap. I have dropped my Rheumatologist and will try to find alternative treatment because I personally would rather deal with the pain and immobility of PMR than be slowly poisoned while I destroy my adrenal glands.

EP Posted 22/12/2011

great site. diagnosed today and feeling so overwhelmed! started prednisone....

S Johnson Posted 24/12/2011

Thanks for a very informative article and it's refreshing to see that you actually list your sources (and that these are all from prestigious medical journals). I use your site often and it’s a pleasure to refer people to your pages, because most seem to benefit greatly from this info. Keep up the good work.

Rabbit Posted 28/12/2011

Female, 36, all the symptoms listed above. Like many of you who were under the age of 50, a diagnosis did not come easy. My GP listened to me for 5 minutes and said he was going to do blood work and put me on prednisone immediately. He wanted me to call him if it helped. Within 6 hours I could lift my arms again. He then referred me to a rheumatologist for confirmation of PMR. That started a 3 year sequence of frustration. No one believed my GP and I eventually felt as though all the pain was a figment of my imagination. A year ago I finally requested a new rheumatogologist and have since been diagnosed with PMR. I am now 50. I was put on 20mg of prednisone last May and am down to 7.5mg. Just like someone earlier mentioned, it seems as though I relapse everytime I reduce my dosage. I too just stick with it until the pain subsides and then I go down again. Last week my specialist put me on a weaning schedule that seems interesting. Hope it works. I take 7.5 on Mon, Tues, Wed, then 5 on Thurs, 7.5 on Fri, Sat, Sun, 5 on Mon, 7.5 on Tues, Wed, Thurs and 5 on Fri, 7.5 on Sat, Sun, 5 on Mon, 7.5 on Tues, 5 on Wed, 7.5 on Thurs, 5 on Fri, 7.5 on Sat, 5 on Mon.... In other words, I will go from 7.5 to 5 in a course of a month. She said the reduction of 5 from 7.5 and then increasing the next day is a way to trick the adrenal gland into working again. Once the month is over I start all over going from 5mg and tricking with 4mg once the first week, twice the 2nd week, 3 times the 3rd week, and 4 times the 4th week and everyday the following week. The next month I'll trick with 3 mg and so on. So hopefully by next summer I will be off this crazy drug. I'll keep you posted...

Cari Posted 03/01/2012

Rabbit, thank you, thank you for your details on how to do this method I have heard of in generalized form. So far I am doing ok by cutting down 1/2 mg every two weeks, although now that I'm down to 7.5 (from 10), pain has escalated again. I took Aleve which lasts me 2-3 days. If I can get used to 7.5 by the end of the 3rd week, I hope to keep cutting back every two (or 3) weeks. If not, I will try the method you've outlined above.

Cari Posted 03/01/2012

What has me helped the most in my 2 years of PMR, of all the many things I've tried (I've done most everything mentioned in this forum), is BIOPHOTON THERAPY, a new treatment I recently found where a computer-like machine reads you and then feeds light frequencies into you to treat illness. I'm very excited about my improvement. Unfortunately, all the experienced practitioners have gone back to Holland, where the machine was invented by Johan Boswinkel. There is one practitioner in Minneapolis, but she didn't know she could work with people on Predisone by neutralizing the Prednisone first. Now there are some brand-new practitioners in the SF Bay area. I'm hoping they will achieve similar results. After each treatment I had 2 bad days and then 1 or 2 really good days, and then it was time to go back for another treatment. It took only 2 treatments for me to see a marked difference. I have had 8 so far. They can also test every med and supplement you are taking and tell you which ones are actually harming you instead of helping. One other thing that helped reeeeally a lot, is (hold onto your hats) a series of 3 energy healing treatments by Jim MacKimmie in Montana during my 5 day visit. Read his amazing book Presence of Angels to get an understanding of how he achieved so many miraculous healings. He is 83 now, so if you have any interest at all, you might want to drop him an email sooner than later and jump on a plane. He only works by referral, so you can give my name (no, I don't get anything for recommending him and I have had many other energy healing treatments that helped only temporarily). I didn't get instantly all better, but after sleeping 10-12 hours each night I was there and still needing a nap after my sessions with him, I came home and was able to hike 3-4 miles again instead of hobbling around bent over like a 90 year old (I'm 64). He said to let it unfold for 6 months to see if I need to return. I'm feeling really optimistic about these two treatments.

Cari Posted 03/01/2012

Oh, one more thing that really helps a lot is Qi Gong followed by 10 min on a stationery bike.

Clare Posted 05/01/2012

can PMR come back my mother had it 7yrs ago and now some symptoms have come back, done blood test and the doctor said she was 22% inflamed doing more tests. thank you Clare

Rabbit Posted 13/01/2012

Well, I'm in my third week of weaning from 7.5 mg to 5mg. All is going well and in another week I will be on straight 5mg. I will then begin again with 5mg six days on week 1 and 4 mg on the other day, 5mg five days on week 2 and 4 mg on the other 2 days, 5 mgs 4 days on week 3 and 4 mg on the other 3 days, 5 mgs 3 days on week 4 and 4 mg on the other 4 day and so on. Hoping things keep going so well....keep you posted!

just another sufferer Posted 19/01/2012

I take Savelle 25mg twice a day. It helps a little but not completely. I will not take Prednisone.....too many side effects. I wish family members could understand this illness and relate. Sometimes I am so tired and hurting that I feel like I'm 70...I am 44.

Sylvia Posted 03/02/2012

I have had PMR now for almost a year and have weaned off the pred slowly but effectively. Until about a week ago when I had an unbelievable bear of a flare up. I am looking for alternatives now and have discovered "zyflamend" which someone recommended. I will start it tomorrow and hopefully it will kick in. I have a feeling, though that it might take some time to know if it is working. I too have gone back to 7 mg pred. and although it is better it is not great. I have resumed walking, even if painful and it seems to modify some of the depression that comes along with this unpredictable disease. Any other suggestions? Devil's Claw? Anyone?

Carolyn Posted 09/02/2012

I'm 68, normally healthy, did Pilates- diagnosed 3 months ago, started on prednisone 5mg/day first month no relief then uped to 20mg/day. I could not believe anything could come on so quickly and hurt so much. I am relatively sure mine started with an infected tooth. By the time they admitted it was a tooth the lymph glands were all up and in a fit--took 4 courses of antibiotics-two courses were gram negative, to get it back from the "dark side" so I could get the root canal. After all that I finally got to the rheumatologist-she knew right away what it was and thus the Prednisone, she did mention tumeric and magnesium, healthy diet and moderate exercise. I have tried several times to reduce the dosage but always wake up the next day with shoulder and neck pain. Even in the short time I have been on the meds I have been growing facial fur, something very new, gaining weight, and worst of all the hot flashes are back with a vengenance every hour or less day and night. Thought I was past all that menopause stuff. Well it's Back!!!



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