My prednisone taper ended on Dec 31 and I felt fine all throughout treatment and for a few weeks after. But stiffness upon getting up from sitting, pains in my outer thighs and shoulders (one was injured prior to PMR, but the pain was gone during treatment), and new pains in my lower back and elbows and wrists (plus tingling and numbness in my hands), have me wondering if my “remission” was an illusion. Is this a “flare” or just more PMR. (My profile has the treatment/taper info.)
I’m thinking I should maybe still be on a maintenance level of Prednisone. Any idea what that might be? I felt fine on 1mg, and for a few weeks post-prednisone.
Do I have to start high and taper again, or start low and increase till my symptoms disappear?
Thanks for any advice.
Written by
OutdoorsyGal
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There is no "treatment" for PMR. There is no cure which is what "treatment" implies. All you can do is manage the inflammation using pred to allow a decent quality of life in the meantime until the underlying cause of the inflammation that causes the inflammation that causes the symptoms we call PMR burns out and goes into remission. That may be anything from 2 years up. You were lucky, you had drug-induced remission - but only as long as you were on an adequate dose of pred. Once you got below the dose you needed - back came the symptoms.
At a guess it might be 2mg, possibly even only 1mg. But the only way to find out is to get the symptoms under control and then reduce down very slowly and see how low a dose works for months. And it can take months to know. This isn't a race. Nor is it a "course of pred".
I would go back to 5mg and see if that works. If not, 10mg and then taper slowly. But no, don't inch up the dose, you will never catch up.
You can say that again! I was on 15, tapered down to 12 and found increasing pain and difficult pains in the head including a deep ache in the pituitary/pineal area. Even went to doctor to check if it was GCA (he was checking symptoms off the computer!!!!). Going up in two day intervals to 14 did nothing so bit the bullet and hit 20 again yesterday - a level at which I did feel comfortable back in April (diagnosed in early Feb). This time have still deep stiffness in arms and shouders groin and butt but seems to be easing. Only Day 2. And feel much more cheerful than I have for months so clearly been on the wrong dose for a while.
I find this analogy of the dripping bucket useful. The trouble is that you don't realise the flare up is increasing drip by drip until you start finding movement difficult. the word flare up makes you think it is something sudden. that was not my experience.
I do have a question here. What is that deep stiffness?? Is it blocked capillaries? It is the kind of stiffness that does not go away with exercise.
As may have said thank goodness for this website which I have only discovered in the last week. And thank you for the two volunteers who listened to me!
I honestly don't think anyone knows - although it may well be the inflammation in the soft tissues around the joints? I had 5 years of PMR without pred so the only relief I got was from exercise - after an hour of aquafit I was unstiffened enough to manage a class of Pilates or Iyengha yoga. But it had to be in a warm pool - if it was under 29C I struggled and it didn't work as well. And walking just seemed to make me stiffer.
It's only been a year since you were diagnosed, so you have done fantastically well to get this far so quickly. So don't whatever you do feel bad about going back on to a low dose of pred if it helps. Doctors are becoming much more accepting about patients' experience being that the disease rumbles along for much longer than the 'two years start to finish' that used to be their mantra. My mum was off pred for good after a year and a half, but my experience was very different.
I have been so close to contacting my internist to request a referral to a rheumatologist but the next morning I feel fine, except for the stiffness getting up from sitting.
I seem to be on a 3 day cycle with good days and bad days, and each time I’m ready to call for help PMR goes into hiding.
I can ski all day one day, feel fine the 2nd day and then worse the 3rd day. And then pretty good again the next day. Is that typical?
I am rather stoic and tend to tough things out rather than whining and running for help, but maybe an inflammatory disease is something I shouldn’t try to tough out? Am I doing actual damage by enduring low levels of inflammation instead of going back on prednisone? I’m so afraid of developing a necrotic hip like my mom did.
Your delayed onset muscle soreness MAY be particularly delayed - it is for some people. Then you rest for a day and feel better the next.
It's difficult to say whether you are doing yourself damage - chronic low level inflammation does do damage and can predispose you to cardiovascular disorders, peripheral vascular disease and even some cancers. Untreated PMR is much more likley (7x) to progress to GCA. And I found the unmanaged version of PMR caused me other problems - stopped me exercising, made me feel rough, isolation led to increase in the low mood that PMR causes, almost to depression. If I couldn't drive there and park close by, I couldn't go. It isn't a simple equation.
“Muscle soreness” isn’t how I’d describe my pain/stiffness.
It’s more like “creaky hinges”, and seems to involve tendons more than either joints or muscles.
On the upside, I’m skiing easier runs this year to avoid overdoing it (or falling, as getting up is so hard), so am not having my usual post-skiing sore thigh muscles!
Update. Still off prednisone, as a dental extraction occurred last week and the oral surgeon wanted me to wait before restarting prednisone if I was going to. Since NSAIDs are blood-thinners, I was also off pain-killers for over a week.
This has been an interesting trial. With no prednisone AND no NSAIDs, (and with a bad reaction to the prescribed antibiotic), my stiffness returned with a vengeance, and getting out of a car or off the sofa made me “walk like an old lady” as my husband noted.
A week post-extraction (and on a different antibiotic), however, and I have resumed taking one Aleve (naproxine) at night and one in the AM, and I’m feeling loads better.
Perhaps my stiffness isn’t PMR itself, but arthritic changes and muscle wasting - and probably tendon and synovial changes - that were either masked by prednisone or a consequence of PMR/prednisone, and appeared when I stopped pred and also stopped the NSAIDs.
So my question now is, if Im getting adequate comfort from NSAIDs, is the remaining inflammation in my system still potentially harmful enough to cause damage? And if NSAIDs are used to reduce inflammation does the risk of developing GCA still remain elevated?
It’s been a rough week - plus I fell on a downhill while cross-country skiing and bunged up my good shoulder, which was bad enough, but when that quit hurting so much, I noticed a knot on the proximal end of my collar bone that wasn’t there before and is tender to the touch but doesn’t seem to bother me otherwise.
I haven’t had blood work since early January, just days off prednisone, and the mysterious wrist and elbow pains have never been xrayed, so I don’t know if I have OA or carpal tunnel or what. Maybe I need to see a rheumatologist?
But it all seems much better since I’m back on Aleve...is watching and waiting a safe course of action?
Sorry - I skied for the 5 years of no-pred PMR, The hip movement was perfect for loosening them up!!
And NSAIDs working for PMR-type symptoms could suggest an inflammatory arthritis of the spondyloarthropathy variety which can present looking exaclty like PMR in the early stages ...
Psoriasis DOES run in my family though I’ve not had it. Both sisters and Dad had psoriasis. One sister has had uveitis, the other has ulcerative colitis and sarcoidosis. Mom had PMR....
So lots of autoimmune conditions in my family, except for me, till now. No arthritis though, that I can remember in any of them for 3 generations.
Aside from my wrists, my stiffness remains confined to shoulders and hips/upper thighs, and is still bilateral, though my range of motion is vastly improved. No foot or knee involvement, thankfully, no neck pain, and very little back pain. (A few weeks before onset of major PMR stiffness, though, I did have a couple days of lower back pain that made me much more empathetic toward people who really suffer with their backs!).
I can deal with the stiffness I currently have, 4 months post-pred, as long as I can feel pretty sure that I’m not allowing further damage from inflammation.
Is there a thread on this forum about what PMR in “remission” is actually like? Is anyone free of stiffness? Does everyone experience muscle wasting? Can we expect to regain strength and stamina?
Hate to say it but I don't think you are in full remission. As a previous post intimated the pmr is still bubbling on. I wouldnt expect no pain (had pain pre pmr anyway). But if as you say..."Aside from my wrists, my stiffness remains confined to shoulders and hips/upper thighs." I would say typical PMR. If pred at 1mg still made me feel less stiffness and pain (inflammation) I would take it. Research has shown that a taper that isn't slow enough is more likely to cause relapse. If 6mg, the dose I am on now, allows me to control pain (relatively speaking) and be mobile I am happy here for ever. I will keep having a taper and if they stick that's fine too.
Probably not - most people in remission just go away and get on with living the life they have back! We have had threads at various times with "I got over PMR" stories but most people don't want to be reminded of what was for them a very dark time. I think most people would agree that you need a good year to get back to "normal" - and that is unlikely to be like pre-PMR since you are going to be x years older and there is also bound to be some impact on your fitness which may take a long time to recover.
Interesting because my diagnosis of GPA was so equivocal; certainly, my symptoms also fit PMR, I do have degenerative spondylitic disease on scan as well as a severe scoliosis. Naproxyn only was possible until I began to have a bllistering skin condition , a rare side effect of Naproxyn, and 2 ER trips for gastritis.
I also find more and more scholarly research on how remnants of the tropical disease I had in 2014 remain in the body as a retrovirus. The symptoms are very similar to PMR and treatment is same. Although, chickungunya de novo patients are more often prescribed Methotrexate for a chronic phase rather than prednisone and seem to do well.
Since this virus didn't show up in North America until late 2013, not much known. Now in the last 6 years, French, American and other infectious disease scholars have much more insight. And it does feel like an inflammatory arthritis possibly triggered by the virus, which may have mistakenly caused a + C-ANCA test in 2014. The whole autoimmune body of diseases is caused by the body's mistakes. I will always wonder.
On the other hand, the initial dose of prednisone was so dramatic that even OA was temporarily gone as was the new upper body pain which took me to the rheuatologist in the first place. The chronic chikungunya disease is so strikingly similar in symptoms to PMR . A link between the PR3 antibody was speculated decades ago by Ausrailian scholars to relate to the chickungunya virus.
But remember: PMR is not the disease, it is the name given to a set of fairly typical symptoms which vary a bit that are due to an underlying disease process. Including autoimmune disorders primarily attacking the blood vessels, the joints, the gut, the blood marrow and, and, and...
I believe that a/i disease is a continuum of symptoms and you just get some of them, some more, some fewer. Which label YOU get depends on the predominate symptoms in YOUR body.
I’m pretty sure it WAS PMR when diagnosed in Feb 2018, because pain resolved IMMEDIATELY on prednisone (and because my Mom also had PMR).
And blood work also confirms: CRP WAS 20.8 and dropped to <2.9 after a month on pred (15mg). By July it had crept up to 4.4 a bit above the 3.0 limit for normal, but was slightly lower, though still above normal at 4.2 in January.
Similarly, sed rate dropped from 40 to 7 in a month, though it crept up to 12 in July and 14 in January, but still well below the normal of up to 20.
Guess maybe I SHOULD ask for new blood work, after 3 full months off pred.
Having it checked now would be sensible - those figures are within the normal range but they are climbing and seem to be high for YOU - any one person doesn't have a range of normal levels, they have a normal for THEM. The trend is the important factor - it is already showing an upward one. And then, depending on the trend, keep checking, monthly at least. Until it falls to YOUR normal - which is in single figures.
Varies from person to person. Neither of mine are usually raised, or ESR may be high for me but still within what is described as "normal range". In some people ESR is a more reliable monitor of PMR - in others not.
I don't know why - but raised platelets are associated with worse ischaemic problems.
Update: New sed rate is 16, up from 14 in January (and still below normal of 20), new CRP IS 3.8, trending downward since January, but still a bit above normal of 0-3. (On diagnosis Sed was 40 and CRP 21)
Rheumatoid factor is negative and X-ray of wrists and hands are normal. Doesn’t sound like active PMR OR osteoarthritis. My MD will refer me to a rheumatologist if I wish, but is there anything left to consider?
My (retired radiologist) husband thinks I’m just “getting old”, and everything hurts for him at 67, so he’s surprised I would expect to be pain free at 65. I DID have injuries to both hips and one shoulder before PMR, but sort of forgot about them while taking prednisone. It does sorta feel like overnight aging, though.
Does that double negative mean you think my aches ARE active PMR?
It’s really nothing like my initial disabling symptoms. I just hobble for a couple steps after getting up from sitting before things return to normal, and my wrist issues are new and weren’t part of my PMR.
Since it isn’t OA, and my RF was negative, I’m thinking it’s got to be tendons or ligaments or something. But I’m SO much better than before taking prednisone.
Well, since I had no pain or stiffness for the entire taper, not even once, and for several weeks after, I’m not sure why it would recur now if it didn’t raise its ugly head AT ALL on any of my 1 mg tapers...
A follow up 20 months post-prednisone (with less than 1 year of active PMR diagnosed after only 1 month of symptoms) .
I’ve become much more functional taking only 1 or 2 Aleve (Naproxyn) a day, and the hand/wrist pains are nearly forgotten, with only residual weakness.
My muscles are getting stronger and my connective tissue issues have subsided mostly. I AM 2 1/2 years older, so some my creakyness is likely to be age-related.
I WAS taking an Aleve at night and one in the morning, dropped to one at night and have even forgotten to take ANY Aleve for a few days at a time.
Since anti-inflammatories work for me, I see no reason to go back on Prednisone, unless I have a relapse.
My initial months off prednisone were a bit rocky, looking back on this thread’s early posts. I (without any evidence) attribute that to sluggish adrenals coming back online.
I’m doing well, thanks. And wish you all well, too. Thanks to whoever reprised this old thread so I could see how far I’ve come.
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