My GP thinks I have Polymyalgia Rheumatica due to pain and stiffness which gets worse on too much exercise and as the day goes on. I developed shoulder pain which seems much worse on my right side and in the morning. I also suffer from gout and am on allopurinol.
I was wondering if PMR can cause widespread aches ? I still get pain in my foot which I think is related to the gout.
I also have osteoarthritis in my knee.
Any information about anyone’s experience will be helpful. I don’t want to take long term steroids if they are not necessary .
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Caradomben
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It is sometimes difficult to sort out what pain comes from which condition, as our age group often has several issues going on. With me PMR was quite distinctive, in that the pains tended to be bilateral, shoulders and groin area mainly, I couldn’t lift my arms much above my waist and I certainly couldn’t climb into a bath. I had a characteristic shuffling penguin walk. The real telling thing was my rapid positive response to 20 mgs of Prednisalone, I could have turned a cartwheel within two days.
I am on 5 mgs after 3+ years and my symptoms are more diffuse, aches more general and shifting, definitely, hitherto, suppressed Osteoarthritis. I got rather stuck at 7 mgs for the best part of a year. I now feel that I could reduce further but am nervous about diagnosed poor Adrenal function. I think I will always have some form of arthritic pain - spine - knees - fingers. Not as “ ill” feeling as PMR though.
Welcome to this warm, friendly, supportive site, it’s been a lifesaver to me. There is so much experience, wisdom and knowledge shared.
Has your doctor taken any blood tests? Also do you have bilateral pain in your shoulders and/or hips? If you are given steroids to try for a week only as a test you could see if they help.
Thank your reply . Blood tests showed a slightly raised ESR but I know this can be because of any inflammatory condition. I have only had 2 days of steroids. Seeing my GP Friday to discuss further
I don’t expect your foot and knee issues are related in any way to PMR. Ask for a thorough work up by your Dr including blood tests. I would be very careful not to push ahead with any steroid treatment unless there is a strong indication of PMR. Embarking on steroids is a pretty horrible path to go down unless it is definitive. Others on the forum more experienced will be able to expand further.
Feet and hands can both be involved in PMR, many doctors are unaware of that.
And after 15 years of PMR and nearly 10 years of pred - I can tell you the horrible path was the 5 years without pred. The 10 years with pred have been worth living.
I was being specific about this persons symptoms (gout and OA) being unrelated to PMR. I see Dorset Lady agrees. Yes, pred is fantastic, but only if there is a reason / diagnosis to support it. Work up is required, seems there is more to be done to arrive at a diagnosis.
When you have been around these forums as long as I have you will discover that a lot of diagnoses are not correct!
I was told I had OA (not PMR) and that was why I had knee pain - just a physical exam, no imaging. An x-ray done this time last year because of pain in the same knee shows no evidence of OA at all, 14 years later. Gout can only be correctly diagnosed by taking aspirates - maybe that wasn't done. It always pays to keep an open mind about possibilities.
My GP said that it is unusual for lower limbs to be affected by PMR but it is possible . I have had courses of prednisone before for gout as I cannot take any other anti inflammatory drugs because I am on blood thinners for Atrial fibrillation ..and found the side effects were minimal.
Where do they get this idea from? Someone else said something similar recently. It affects the hip girdle and proximal limbs (nearest to the trunk) - and if it involves RS3PE syndrome it affects the distal limbs (hands and feet) too.
What kind of symptoms might someone have in their hands if they were affected by PMR please?
Also would the Giant arteritis element ever cause difficulty swallowing at night as well as jaw muscle pain and tenderness?
Someone has just suggested to me I may have PMR and I’m interested in understanding what some of the more atypical presentations might look like as I’ve had some odd symptoms indeed!
Sore and stiff probably, I had sharp pains when bending fingers as I had tendonitis.
One very typical symptoms of GCA is jar claudication - pain when chewing which then goes when you stop only to restart when you chew again. You can replicate it by chewing gum for 2-3 minutes, that is enough to elicit it. Not sure what you mean by tenderness.
Some of your symptoms are very PMR like, but not all. Has GP run any blood tests to a rule out other illnesses or check inflammation markers?
As others have said a week at steroids will probably determine whether it is PMR or not. You can take steroids short term without them causing a problem.
Your gout and OA are completely separate from PMR.
I am a newbie too! Have had PMR for nearly 5 years though. In my experience and I think it's pretty much accepted that aches and pains are worse in the morning and get better as the day goes on. I remember mine got noticeably better in the late afternoon before I started on prednisolone. Also I think excercise helps rather that makes it worse if you can make yourself move more. But maybe this is just the way it effects me?
Agree with the exercise. I am walking six days a week. Even though this morning's humidity made the walk very uncomfortable/difficult, I feel better after having gone it.
If you have PMR then long term pred is the only option to deal with the pain and stiffness - which CAN be lived with, I did for 5 years, but it is very disabling and has a big effect on your quality of life as it does tend to get worse as time goes on. I didn't have a choice - my GP was incapable of coming up with even a possible diagnosis so I was left to get on with it. A rheumatologist also missed it - said it was OA. Nearly 15 years later there is still no evidence of OA in the knee where she claimed she could "feel it".
PMR caused me pain all over - but mine tended to improve through the day as I got moving. But I couldn't live a normal life - I couldn't walk far or do any housework without quite severe pain which would have got worse - I just avoided all I could, I still do (a bonus)! I had a lot of foot pain - but both were affected - especially my insteps, which was probably synovitis and tendinitis.
A short trial of 15-20mg pred (a couple of weeks is enough) will almost certainly show if it is likely to be PMR - I got relief in less than 6 hours with 15mg, not total but the stiffness was almost gone, the pain took longer to all go. And if it doesn't work, you can stop quickly too. But nothing would persuade me to go back.
Pred isn't as bad as it is painted - and although it sounds awful when you read the side effects no-one gets them all, some get next to none and all of them can be minimised or even avoided when you know how. And you will get plenty of advice how to here.
I agree. I have had very little problems with prednisolone although only been taking it since early January this year. No weight gain as I have cut down on carbs and sugar. My optician said no signs of glaucoma and just have slightly chubbier cheeks which will improve as I taper.
The pred test worked for me. Within four hours I could touch my toes having been feeling about 100 and stiff as a board for months. Pred worked for me and after three years of PMR I have now been pred and pain free for two years. So, if you need it, my advice is take it!
Hi, welcome to the best education you can get on the subject of PMR , prednisone, and learning to live with both.
I, like you, did not want to take prednisone.
Period!
Then PMR took me down! I could not turn over in bed, dress myself, even pull blankets over my shoulders.
I had to endure 2 months time before I could get Pred, and I tried all kinds of pain medication, which did little to help.
Finally, I got relief!
That was nearly 6 years ago.
In these 6 years, , thanks to the advice, support, and education from people on this forum, Prednisone has become my friend.
The horrors I heard would come with Prednisone, did not materialize.
I do not have diabetes, I did not gain weight, I do not have osteoporosis.
Long story short, the horror stories scare us... and perhaps some people have developed side effects, but my experience is mostly positive.
With prednisone , I have quality of life that had disappeared overnight with the arrival of PMR . I am still hoping to be rid of PMR soon, but happy enough to keep working that direction .
Don’t let the old myths terrify you, prednisone is the only treatment for PMR, and each of has a different experience.
The experts on this forum will answer your questions, cheer you on, and hold your hand when you have a rough time.
There is someone here 24-7, and the archives are full of answers that have guided those before you.
Hi! Diagnosed Feb 2018 and I too have had very few problems with pred. Chipmunk cheeks at 25mg which have now gone - presently 8.5 mg, sensitive teeth very much helped using Sensodyne toothpaste, which also doesn’t seem so bad on lower dose. No diabetes, no weight gain, no increase in BP, no osteoporosis. I did get severe lower leg cramps which have markedly decreased, but they began prior to diagnosis and pred, so I am certain due to PMR. Also some hair loss on crown which I am also sure is due to PMR. Bouts of fatigue at times, which I think is due to PMR, and I have learnt to give in to them and rest, but I do feel for those who are still working. Quality of life wins out for me over not being able to roll over in bed, dress myself, comb my hair or get myself off the toilet.
Most drugs have a list of possible side effects as long as your arm.
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