It seems so many PMR sufferers “finish their treatment” only to find that they now have other painful conditions like osteoarthritis that they “didn’t have” before being diagnosed with PMR.
I fear I fit into this category. Since ending prednisone 3 1/2 months ago, I have had (non-symmetrical) shoulder pains, episodic sore elbows and wrists, possible carpal tunnel tingling and intermittent numbness, sore thigh muscles (tendonitis?), and the list goes on.
As taking NSAIDs seems to relieve most of my discomfort (though not the stiffness after sitting), I’m thinking it’s not the PMR rearing its ugly head. But why all these other previously non-existent conditions?
I did not have (symptomatic) OA before PMR, and never had wrist problems. Only my right shoulder (which I had injured years ago in a fall) hurt before PMR, now I’m gimpy on the left too.
Does PMR DO something to our joints and connective tissues that makes it so we can NEVER hope to regain our former mobility and pain-free status, even if our PMR goes into remission?
Does PMR open the door to musculoskeletal changes that allow other conditions to attack while we’re oblivious on steroids, then make themselves known after pred ends?
Doesn’t seem fair!
Written by
OutdoorsyGal
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I think the main thing is - we’ve all aged during the PMR or GCA journey. Plus of course, above a certain level Pred masks all or virtually all pain.
I certainly had OA pre GCA , and almost forgot about when on higher doses of Pred - then of course it crept back as I got lower- and also had another 4 years to deteriorate.
Not saying whether it might have an impact or not - don’t think there’s been any studies to confirm/deny.
And no - it’s not fair!
I remember my mother telling to me once an old lady had said to her when she was young and complaining about something - “nobody ever promised you life would be fair!”
Think that sums it up!
Hi Outdoorsy Gal
It’s a bit of a B to be honest, sometimes some of those aches n pains were already starting when the PMR took hold & Pred dampened down all our inflammation.
Years in some cases have passed since the start of the PMR/Pred so with age, more of these things have started to make themselves felt!
I developed very bad knees (OA) while still on Pred as they were affected by Chemo but l have many areas now which now hurt & aren’t PMR 😔
I’m having a bit of a bad time with things at the moment & GP has put my Pred up again!
It’s probably time for a bit of a review of the treatment for your ‘new’ previously masked issues & go from there.
PMR does cause synovitis - and it is perfectly possible that is what is going on. But PMR does NOT cause lasting destruction of the joints - even though there are some doctors who will say it does.
Hi there I am 54 and have had PMR for over 2 years. I am now down to 1 mg and agree that there now seem to be lots of niggles I hadn’t had before. It is hard to tell sometimes if it’s a flare or something else. I have had bursitis which now seems to have settled. Having read some threads I am
Thinking I may have Piriformitis now as I have a stiff bottom and sciatic pain down my leg!! But I am sure it’s not PMR.
Maybe as others have said 2 years makes a difference.....
Hi Julie, congratulations on getting down to 1mg. And sorry the other nasty stuff is hanging around.
I have the Piriformus problem with sciatic pain in the right leg but the worst for me is problems with the hip adductors in both legs causing significant pain right into the groin. I was referred to a physio who does some eye-watering massage. This, while unpleasant at the time, really helps. But there’s no sign of any long-term relief. I also have to do core strengthening exercise which are tough.
It was hinted by the physio that it was actually the steroids that probably caused the problem as they can weaken tendons etc.
I refuse to believe that one year has made THIS MUCH of a difference!
I had PMR symptoms for only a month before diagnosis, and was taking prednisone for 11 months. AND I remained active throughout, hiking and biking and skiing.
I so identify with this. Like you no aches or pains of any description and very active before PMR. 3 years on have needed 2 hip replacements and have pain ( some days and not others) in elbows, wrists , feet and neck. I can't help feeling that this has got to have something to do with PMR. Down to half milligram Pred now, been there a while and about to go to zero . I have been taking ibuprofen and that has helped with elbows feet etc when they flare up and plan to continue that when I have stopped Pred.
Avascular necrosis in one hip and osteoarthritis in the other. Mobility deteriorated really fast in both hips so much that surgeon referred me to rheumatologist as he felt the amount of inflamed tissue he saw when doing surgery( presume from PMR) was a cause for concern and he worried that my other joints may go the same way. Rheumy is monitoring me.
I had pretty bad oa before PMR.. hip replacement...other aches and pains terrible OA in toes (but fine walking still) and the prednisone has been a real boon for that. I DREAD going off it now that this is mentioned! Maybe I just hang around 3mg forever if I ever get there! ha! I do find that absolutely NO sugar and some tylenol took care of the OA pain pretty much pre prednisone.
I noticed the same thing when I was off of prednisone after two years — that prednisone had masked all the other knee etc. pains I was having. When I was diagnosed with PMR my dexascan read that my bones were better than they had been nine years earlier, I feel that was because I retired and was moving more and not sitting in front of a computer. But while on prednisone my right hip started hurting and after complaining to the rheumatologist for two years, she ignored me. Finally after an X-ray and more time went by it was determined that I had evascular neucrosis— which is a side effect of prednisone that I had never heard of. This is when prednisone shuts done the supply of blood to the hip and the bone dies. One is supposed to stay off of your leg for 3 months (crutches etc.) and there is a possibility the artery will open up again— but the doctors ignored me and told me to exercise — the opposite of what I should have done. I wore the hip bone flat and it was very painful. The result was hip replacement. 😩 Prednisone is very detrimental to the bones.
I know. Some people have no side effects. I did not gain weight or get moon face, but I did get hand shaking and lots of hair falling out too. Thanks for all of your knowledge! It was such a miracle overnight that the PMR pain went away, but they call it a deal with the devil, so I was very sad to have the hip replacement.
~Does this apply to hydrocortisone PMRpro? Both knees been in state of change (O/A), wrists, toe joints, some fingers & hand joints too - always manage to knock these jolly areas too!!
I don't know what differences there are - corticosteroids are corticosteroids and potentially will have similar effects. But I suspect HC has been used less than pred so there will be less evidence.
~Certainly - a steroid is a steroid at the end of the day. Maybe in my favor (possibly) is that fact I've responded well to a small dose which is not as strong as prednisone. That being said have been up & down dose wise for just over 4 years & side effects similar to pred.
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