I’m interested in others’ experiences with relapse following treatment for PMR.
I finished my11-month course of prednisone Dec 31, and was fine for awhile but stiffness and pain - and limited range of motion - are creeping up on me.
My internist, who has treated many people with PMR, said that if I relapsed it would be “just like the first time”, almost overnight and dramatic. She thinks my recent pains and stiffness are due to advancing age (I’m 65) and likely tendon-related, partly because my C-reactive protein and sed rate numbers are low. She thinks physical therapy is what I need, to stretch my tight tendons and regain flexibility.
My gut tells me the PMR is back (or something worse like fibromyalgia), but I’m not eager to get back on prednisone because my Mom had PMR (in her 80’s) and couldn’t get off prednisone and ended up with a necrotic hip that had to be replaced.
Any insights, fellow sufferers?
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OutdoorsyGal
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You’ll get the ‘official’ replies soon, but I’ll kick so you get a quick reply. I do believe there is a bit of codswallop coming from the internist. Reading on here for about 2 years (already?! 😱) onset of PMR and relapses take different forms with different people and no it isn’t always the same as before. PMR has a much longer life than 11 months and you don’t get rid of it with a course of Pred. It goes in its own time while the Pred helps stop the inflammation doing damage at the lowest dose that’s effective for you, normally years not months. Raised blood markers for inflammation aren’t always a good guide either, though for some it is. Was it for you initially?
A few questions- Why do they think it is tendon related? They may be right but how are they making that diagnosis? Where is the pain? What makes you think it’s PMR?
Your hip necrosis worries are on another thread, so I won’t bore you further.
At my initial flare up, CRP was 21 and dropped to 4 five months later and has remained there (that’s just above normal). Sed rate started at 40, dropped to 7 in a month, and has been 12-14 for ten months, well within normal range.
Is it possible that I am flaring though these markers are normal, when they were elevated before? What’s the test for PMR in the absence of blood testing? Response to prednisone? How much is typical to attack a relapse when I’ve been off prednisone for 2+ months? Anyone?
If your Dr has sold you an 11 month course of pred for PMR, then I’m afraid it just highlights how little she knows. I wish I had her crystal ball so I could determine how long mine would last (just coming up to 2 years pred and still on 6mg.)
Ask her if she thinks it would be acceptable when she reaches 65 to be disabled because she’s of ‘advancing age’.
Best to find a doctor who understands autoimmune diseases and their unpredictable nature. It doesn’t just go away that is why we are here. Yes, I have heard of steroid induced bone necrosis. It is rare but does happen. You have a couple challenges ahead of you as we all do so stick around, you will get lots of help here💗
The median duration of treatment with pred for PMR is 5.9 years. The time it has taken for the symptoms to return is pretty tyical for someone where the underlying disease activity is low and probably 3mg or less would have continued to be plenty to manage it. The inflammation is like a tap dripping into a bucket - the slower it drips, the longer it will take to fill up. The underlying autoimmune cause of PMR seems to cycle in activity - falling, allowing a reduction in dose, and then something wakes it up again and more inflammation is created and you flare if you aren't on enough pred to keep you free from symptoms. At higher doses that happens below the surface - eventually the rocks stick up into the air.
There is no "treatment" for PMR - it is a chronic, albeit mostly self-limiting, autoimmune disorder with slightly varying presentations. There is no cure, the best on offer is that corticosteroids will manage the symptoms well and, with care, will allow a decent quality of life until the a/i part burns out and goes into remission. For about a third of patients that is in up to 2 years - fewer than 1 in 5 are through in a year and 5% of us have it for years and years, sometimes for life. But I live pretty well I think. I wouldn't if your doctor was mine.
Like Snazzy I'm calling b*££ on your internist. I doubt she has managed as many as she claims she has - not least because she doesn't know that a relapse isn't necessarily the same as inital presentation and even that differs from person to person. I bet most people who went through a similar journey to what you describe either voted with their feet or are stuck at home unable to have a decent life believing she is right. My PMR, for example, crept up slowly - until one day I had a sudden flare after being unwell and couldn't move. It faded over the following few months. Many people realise that looking back all the signs were there for months, sometimes years, before the final shock.
PMR involves tenosynovitis - so she is partly right there. But overall? She hasn't a clue.
My internist will refer me to a rheumatologist, if I wish. She’s good on other stuff, and I like her, so I’ll keep her as my gatekeeper for Medicare (yes, I’m American.)
She did sound pretty sure about the nature of relapse, though, and tested my strength and pain with a variety of hands-on resistance tests, similar to what the shoulder doc (orthopod) did when he examined my very painful shoulder 10 years ago. It was diagnosed an impingement (non-rheumatic?), and we treated it successfully with Naprosyn and physical therapy for a year.
Now that I’m off the prednisone, and not taking naprosyn, my shoulder pain is back, and the other is also hurting. PMR? Impingement? Or both?
She thinks the passage of the past year during PMR treatment has increased my normally tight tendons and shrunk the space in my shoulders to accentuate my impingement. She herself has two impinged shoulders that she has controlled successfully for 15 years with exercises prescribed by a physical therapist, and will refer me to the PT of my choice, and Medicare will cover it.
Though I complain of “creaky hinges” when I get up from inactivity, my pains don’t seem to be IN the joints, but rather adjacent to them, which is why tendons are under suspicion. I also wonder if several courses of Cipro (ciprofoxacin) for UTIs during the early years of menopause may have made my tendons susceptible to damage.
I still have 10-15 1mg prednisone tabs. Is that enough to TEST whether this is a PMR flare? How many would I take per day to smack this thing back into submission? Do you normally hit it hard during a flare and taper quickly, or just up your dose to the last dose that was working before the flare?
And a history of Cipro and pred is not encouraging for healthy tendons though the longer the gap between their use the less the risk, it isn't gone though. I spent 9 months on crutches when Medrol plus Cipro did a number on my achilles.
I don't really know - the trouble is that the inflammation has already built up so it is difficult to know how much you need to get it under control - nor if a single/2 days dose is long enough. 15mg had me mobile in under 6 hours, others took 6 days...
PS - many people are diagnosed with frozen shoulder long before PMR. The evidence is usually it was due to the PMR starting.
Thanks, pro! I’ll see what happens in the next couple days, and call MD for a referral to a rheumatologist if it keeps on bothering me or gets worse.
Give Us Strength! Sometimes Drs just say ridiculous things! I read a copy letter from a Locum Consultant saying my CRP was raised due to my BMI yet 2 weeks before it had been within Normal Limits (that’s my CRP not my BMI) 😉 so how was it now my BMI & not PMR showing itself again?.......
"2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative"
"2015 EULAR–ACR recommendations for polymyalgia rheumatica: the message and next steps .....................................
The 2010 BSR guidelines for the management of PMR [3] have been embellished by the 2015 EULAR–ACR collaborative recommendations for the management of PMR by an emphasis on individualized management [4]. These recommendations allow optimal treatment of PMR to be achieved with a balance between efficacy and minimal undesirable effects of glucocorticoid (GC) therapy. They also recognize the need, in older people, to optimize co-morbidities that may interact with disease [5]..........................
These recommendations, developed with considerable input from patients and the charity PMRGCAuk, have implications for general practitioners and specialist physicians routinely managing patients with polymyalgic symptoms.............................
Treatment of PMR patients should be based on a shared decision-making between patient and treating physician. It is necessary to educate patients with PMR as informed partners in their long-term therapy. Healthcare professionals should make use of information booklets, online educational material and support groups (such as PMRGCAuk)."
Maybe we should have this bit in Gifford's reply printed out and carry it in our bags!!
"Treatment of PMR patients should be based on a shared decision-making between patient and treating physician. It is necessary to educate patients with PMR as informed partners in their long-term therapy. Healthcare professionals should make use of information booklets, online educational material and support groups (such as PMRGCAuk)."
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