Hi, Only my second post but I am in a similar situation again. I got off the Prednisolone in March with a few niggles the doctor said was " a little wear and tear " so as I am 5 years older I thought it might be. I am now 66.
Now I have so much pain in my hands wrists and arms and into the shoulders. I find it difficult to do everyday tasks. Also have pain in feet and knees. I have been seeing a Physio for my knees and have been going to the gym, cycling etc. I also walk every day with my dog but always feel stiff afterwards. The Physio gave me some band exercises to do for my arms but they didn't help in fact they hurt so he said I should stop.
My CRP is normal so the doctors are being of no help except one has referred me to the Rheumatologist but after waiting 3 weeks have no appointment yet. I am reluctant to see him anyway as the last time he kept me off steroids while doing other tests but by the time my CRP levels had risen I was in agony.
I know people say it can take 12 months to feel better after coming of the Pred. so can I expect to be like this for a year or is it another flare ..... or could it be something else. Do you think I should take some Prednisolone for a couple of days to prove or not if it is PMR ? I just don't know what to do next.
Any advice would be very much appreciated as the lovely people on here know much more than any doctor I have seen.
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Brenmel
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Hi Brenmel, I am sorry you are suffering so much. You seem to have been very proactive in seeking alternatives to Pred. In your shoes I would be tempted to do a small Pred experiment. It's like the forest fire analogy, a few flames are easier to deal with than a full on bush fire or PMR flare. It does strike me that you have been doing a lot of vigorous exercise, it could be that it is too much too soon. If I hear a doctor say " wear and tear" to me again I will scream. You do know that CRP results can be normal throughout PMR don't you? Not a sure fire indicator unfortunately. Let us know what happens.
Thank you SheffieldJane, yes I think I will try some Pred and see what happens. I know that CRP can be normal (only because if this forum) and that's a problem for me as the doctors I see don't believe that. Will let you know how I get on.
I would take 1m of prednisone and see if it helps. Seems there have been others on this forum that have gotten to 1/2m or zero and have had to take more. I would not let it get away from you😊
It's correct that it can take your body some time to get back to normal after Pred, but when we say that we generally mean hormones etc settling down - not pain. Of course you will get normal aches and pains considering age - maybe arthritis etc! But yours do sound suspiciously like PMR.
Have you tried taking painkillers? If so, and they help then it may not be PMR, but if they do nothing then it could well be resurfacing. In your situation I might be tempted to try a couple of mg of Pred to se what happens.
Your CRP reading usually lags behind systems so don't be too accepting of that.
Possibly you may get heard better because your CRP took a long time to rise originally. But it is a story I have heard a lot - got off pred in the spring and by summer the symptoms were back. Often even 1 or 2mg is enough to manage things - but they are so desperate to get patients off pred they push them. And this is what happens.
As we're always saying - why not let people bimble along on 1 or 2mg as needed.
Even after all this time can't get my head around some doctors' attitude to Pred They seem quite happy for us to be on other, just as powerful, drug for life, but Pred - no!
Would say it's because PMR is not life threatening, whereas other illnesses can be - but that doesn't always apply - in my case OA isn't life threatening but doctor happy for me to be on strong painkillers (if I wanted to be, but I'm not).
B****r the drugs! Just wish I could teleport in new parts to my body!
According to my GP in years to come the boffins will be able to recreate your joints as they were at 20yrs of age and implant them. But as he said the surrounding bits will still be 70!
Brenmel, you've only been off prednisone for a few months and your having physio, going to the gym, biking, and walking the dogs every day. Dare I suggest the issue may be you're up the activity too far too fast? I've read many times it can take a year or more to get back to the new normal with just the pains of aging lingering. As much as I hate to suggest it, could it be PMR coming back to haunt you. The pain you're describing make me very suspicious even though your CRP has not risen.
Hi nuigini, Yes it does sound like a lot of exercise but I do everything at a slow pace. I think you are right the pain is PMR yet one doctor I saw told me the pain I described wasn't PMR!
I am in exactly the same situation as you. I also tapered off of prednisone in March after 5 years of pred for PMR (and GCA). Oddly, for 2 months I felt quite well and then for the past 2 months I have had the same pains you describe: feet, knees, hands, wrists, some shoulders. It hurts, but it does NOT feel like PMR pain to me. Just to check, I asked for a blood test and my inflammation factors were low. Paracetamol does seem to help although I need to take it twice a day to stay on top of the pain, and still there is discomfort especially when climbing and descending stairs. And of course I do have some Osteoarthritis, like so many of us do. But I don't think the OA could have suddenly increased in so many joints at the same time.
My doctor thinks it is withdrawal pain and I should continue to treat with paracetamol, and I tend to agree. My understanding of what happens to us on corticosteroids is not just a shutdown of adrenal glands, but a suppression of the whole HPA feedback loop (hypothalamus, pituitary, adrenal). It seems to me that taking even a small dose of pred to see if I feel better would just be interfering and delaying the recovery of that feedback loop. So I am continuing with the paracetamol (it's only 1000 mg. total per day). I exercise mildly, by walking up to 30 minutes a day, and as I track my pain and my exercise, I cannot see any connection between the two, as the pain goes up and down.
I think I am just recently beginning to experience milder joint pains, and I'm hopeful this is the trend as I go into my 5th month off pred. I hope you find improvement too.
No it's unlikely that the OA will have increased that much in all joints, but certainly after 5years of Pred you will certainly notice the pain a lot more!
Although if mine's anything to go by, and recent knee X-ray confirmed at such - don't rule it out completely. Plus of course the surrounding muscles have weakened during the GCA/PMR/Pred years, but they can be built up,again, slowly, although not sure they ever get back to what they once were. But I guess that's life!
We're apt to forgot that our bodies have carried on aging during the Pred years, and it comes as a bit of a shock to the system - it's like seeing an old friend after years of separation - you notice the difference - good and bad!
Just thought it might help to share my experience. After almost two years of Pred, got down to zero in May 2016. All fine, although a few niggles, but gradually the niggles got worse until I decided, with a very heavy week approaching (flights, wedding, memorial service, lots of walking, early starts, late nights), to go back on 5mg of Pred in November 2016. I am lucky that I have a doctor who simply says 'do what you think's best or what your body needs'. I haven't had a blood test since first diagnosis in November 14, but fairly sure that would be inconclusive anyway. So, stayed on 5mg for a couple of months and then tapered roughly 1mg a month and sometimes taking pred only every other day until I came off completely in June this year. Completely different feeling. No pain at all, other than a slightly stiff neck on waking and that's gone by the time I'm up and showered. I'm 61 and feel as fit as I ever did. I never stopped doing everything I wanted to (and needed to as I run my own very busy business and have a very energetic dog) but I now feel completely 'like me' again.
Suggest you put yourself back on Pred and see what happens and then tell your doctor (but maybe that's just my way of doing things!).
Hi Lyn_seaside, Thank you, it helps a great deal to read your post you must be over the moon to feel so fit again. Well done! I think your way is my way too.
I bought a book called There is Life After Cortisone by Nicola Coleman? This is for when I can see a future without Pred. You could read up on how they coped? Might help. Gods luck.
Responding to the other comments that maybe you need a mg or so of pred. At the very beginning when I was diagnosed my doctor, in one of her more illuminated moments, said she had patients who kept a supply of 1 mg tablets on hand for occasional use. I think the idea was that gradually the need for this little dose would diminish until one day you realized you hadn't needed it for a long time and were now off pred.
Thank you all so much for your response, that alone makes me feel much better. Have to tell you I took 2mg Prednisolone this morning and my arms (which were the most painful) are left arm 80% right arm 70% better already. Think this proves it is PMR . Wish me luck for when I tell my doctor on Wednesday! lol
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