I am new here. I was diagnosed with PMR in October of 2016. At that time I had the usual inflammatory markers and pain. Fourteen months ago and recently I had more blood work, and my markers were normal. During all this time, my pain level has never improved. I've gone up and down on prednisone, and I'm currently on 2mg. My rheumatologist wants me off completely. Fourteen months ago I had ultrasound on both shoulders where they found bursitis. A more recent ultrasound showed tendonosis, degeneration, and a rotator cuff tear. Needless to say, I have not been out playing tennis! My hips also show damage. I want to know why my shoulders and hips are such a mess now, since I supposedly don't have PMR anymore. Will they get worse? My doctors don't seem to acknowledge any connection. I'm currently struggling through physical therapy, and getting discouraged. Thanks for listening!
Rotator Cuff Tendon Ruptures and Degeneration - PMRGCAuk
Can I clarify? You had pain in which areas? You started on 20mg pred but had no resolution of symptoms in the first week? Did you have any stiffness?
Inflammatory blood markers will reduce because of pred, and this is not indicative that PMR is ‘over’.
Mostly pain in my shoulders, upper arms, and hips. Started at 15 mgs prednisone, and I felt pretty well. Doc started taper right away. When I reached 5 mgs, pain returned, but not SED or CRP numbers. Went up to 7.5, then started taper again. Doc said it's not PMR, there must be something wrong with your shoulders and hips. Damage to those areas now seems permanent?
Were you ever free or massively reduced from pain? Cos if you were not then your PMR was not dealt with. Inflammation needs to go.....and THEN you reduce doses always watching for when the pain comes back.
Unless I am missing something it sounds like you could do with a change of doctor. To either give you enough pred or decide you have something else giving you these symptoms.
My gut feeling is you were never on a high enough dose of pred.
Add on to my previous reply...Sounds like you are a tennis player. So am I. I had loads of scans etc to prove I had calcification, tendinitis blah blah in hips, shoulders before diagnosis. But when I was on the right dose of pred no pain. Your doctors can’t see a connection. Well I think I can. Get on the right dose of pred. Dind another doctor?
You may be right about my rheumatologist. She is very concerned about steroid use.
No, I'm not a tennis player. I was making a joke. I really haven't done anything that would lead to a torn rotator cuff.
My radiologist husband says EVERYONE has damaged shoulders as they get older. We just aren’t all symptomatic. Same with osteoarthritis.
Why these aches and pains become so prominent after PMR/prednisone, I don’t know. It isn’t just the passage of time because for me it was only a year and I was FINE before. It also seems unlikely that lack of exercise during PMR/prednisone is the cause, because I kept skiing and hiking and biking throughout, maybe not as hard, far or long, but I was active. Yet I’ve “aged” a decade, physically, in the past year.
Think your doctors are in cloud cuckoo land!!
You got to the desired dose - the lowest dose that manages the inflammation and - as a result - the symptoms. 6mg at a guess. The markers didn't go back up because you are still on pred - that happens in some people. It is a low, what is called physiological, dose and similar to what you body requires to function anyway, The long term effects are minimal.
same work, different views.
Time to find a rheumy who isn't scared of pred and is up to date on the knowledge.
Both helpful articles, thank you. Question: When they talk about "flares", can they be with or without elevated inflammatory makers?
In my experience there are about 1 in 5 patients who never have markers that get out of normal range. There are more whose markers don't rise while they are on pred for some reason. And others whose markers lag well behind any increase in inflammation, whether on or off pred. So the symptoms should always be the main guide. A rise in markers without symptoms shouldn't result in a kneejerk increase in pred dose - but a repeat of the blood test a week later to establish if there is a trend. Other things can cause a rise in ESR and CRP including even a minor chest infection.