Is there mild PMR.

Posted , 14 users are following.

I was diagnosed with PMR in 2015 . Classic symptoms, pain in shoulders and hips. Initially on 30mg and still found getting up stairs difficult in the morning. Later on in day I would feel fine and a bit of fraud but next morning hard to move again. On Eileen's advice I started to take my dose at about 4.00 in the morning. This changed my life and made an enormous difference. I kept to this regime for the next four years and gradually tapered down with occasional hicups on the way. I would say that for the last year or more I had no symptoms but following advice on this forum and elswhere I tapered down very gradually so not to risk either a flare up or too sudden withdrawal from Prednisone. Travelling seemed to bring on symptoms and I would have to increase dose for a while. I finished taking Prednisone in March shortly before having a knee replacement. The timing of this op was partially to coincide with finishing Prednisone. Apparently it is better not to be taking steroids whilst having major op. During my recovery from knee op I've been having problems with stiffness and pain, not in the classic PMR places but in my fingers and legs. It is worse in the morning, but can last all day. It responds quite well to Ibroprufin. I have had tests for inflamation and the results were slightly higher than normal. My doctor said that if it is PMR then I should take Prednisone again. My surgeon said it was either PMR or arthritis and now I am no longer taking Prednisone I am noticing symptoms. He also said the Pred was probably masking knee pain I would have has before my knee op. So, am I now suffering from mild PMR and if so what dose of Pred should I take? Should I just start at 1mg and increase until symptoms go away? I need my hands, I am a mountain guide and strong fingers are essential. On some mornings I can't even open a milk bottle! Or, am I barking up the wrong tree and it is not PMR despite my history with the disease. Or, is it just the normal aches and pains of growing older (I am 64)? My fellow Swiss guides say "if you wake up one morning, and nothing hurts, you're probably dead!"

0 likes, 11 replies

11 Replies

  • Posted

    After getting off pred last year I had a flair in my arms and hands - I never had those symptoms in my arms and hands before. My Dr recommended 10 mg pred daily however I agreed to try 5 mg daily and that handled the stiffness and pain fine.

    I am now just again tapering off slowly but stayed on 5 mg daily for 8 months before I began tapering again.

  • Posted

    Most imagine that PMR just disappear in the sunset. My experience is that it is more like ocean with ebbs and flows, changing all the time. I had pmr since 2015, and got to low dose relatively quickly, but then I could not reduce any more without some symptoms returning. Last year I was down to 3mg and then my hand/palm got swollen and weak. Rheumi suggested it was Synovitis and to increase pred by 5mg ( to 8mg). Symptoms went away after few months. I carefully reduced and when I got to 1.5mg I developed the same problem this year. I had to go up to 5mg and then tapper down.

    If you suspect PMR or one of add-ons, then it is better to "hit" it with higher dose ( 5mg for example) for several weeks and then reduce from there. It rarely works if you try to increase the dose gradually, because there is accumulated inflammation that needs to be cleared first, before you can find necessary maintenance dose that manages your symptoms.

  • Posted

    Sorry to hear that. I have suffered much pain in hand/fingers and feet, including swelling. Could not lift a cup or walk my dog. It was the first symptoms that went away with pred. so it does sound like PMR

  • Posted

    As others have said, starting at a low Pred dose of 1mg wouldn't do it. However, initially at least, I would take the view that this is unlikely to be a return of PMR, and that you should not start taking Pred again. I would want to be more certain of a PMR diagnosis before re-starting the Pred roller coaster. There are other arthritis conditions that can appear (or disappear) at our age. Some of them will even appear to respond to Pred, but that doesn't necessarily mean that it is PMR.

  • Posted

    interesting to read your blog.

    whilst on holiday recently i took meds early morning but half of the dose to help me get up and out.

    The rest I took after food.

    PMR has affected my hands and feet and just before diagnosis i was getting terrible cramp at night, particularly in my feet.

    i hope you are not getting a reoccurrence of the condition. Having had two knee replacements i empathise but it does take about a year to get over each one completely.

    I found physiotherapy and hydrotherapy treatment really helped.

    Good luck with your recovery.

  • Posted

    The consensus seems to be that my symptoms could well be PMR returning in a different form, less painful but in a way more debilitating because use of hands so important. Suggestion seems to be take 5mg and see what happens. If little effect then I will stop. I think that sometimes doctors prescribe a dose of prednisone for various conditions for a short period and then just stop. In other words, no need to taper down. On the other hand, if the pred reduces symptoms, then I can taper down gradually to find lowest dose that controls symptoms. My understanding is that reaction to pred is one of the best ways to establish whether one has PMR or not. I don't think I've got much to lose by having a go with 5mg for a while - maybe a couple of weeks.

    • Posted

      Up to 10 days to 2 weeks at such a low dose you can just stop taking it, no need for a taper.

  • Posted

    You could try 5mg and if you get a quick response to your pain and stiffness, its most likely PMR, if you dont get any reaction, then unlikely PMR but you can come off the pred quicker if you don't stay on it longer than, ideally, 5 days but up to 7. I suspect you'll get a response quite quickly.

  • Posted

    Agreed! But I have to wonder if there might not be some carpal tunnel syndrome. I know CTS starts with tingling in the fingers but the end result of weakness and loss of capacity is the same. My PMR led to CTS and release surgery in both wrists. Full capacity returned.

    Wishing you all the best in any case!

  • Posted

    A German friend used to say the same - he reckoned from 40 ...

    The time scale and coinciding with major surgery would make a recurrence of PMR not out of the question. If it were me I would agree with the GP and try pred for a week or two and see what happens. Since it is so mild still I would try 1 or 2mg first - you were dong fine on that sort of dose before the op. I wouldn't normally suggest working up the dose but it seems an idea here. I'd certainly rather take a couple of mg pred than long term ibuprofen whatever it is although it doesn't often do much in PMR.

    • Posted

      Hi Eileen,

      Following on from what others said, I took 5mg last night and my fingers and general stiffness are noticeably better than before. You're right - my last dose before op was 1mg and even when I stopped completely I was OK. I thought that i was done with PMR (and i might have been for a while as i was on a very low dose), but maybe the trauma of a major op has brought it back to some extent or it was always going to come back anyway. As so many people have said, one never knows with PMR. I actually consider myself pretty lucky as I've managed pretty well and been able to do pretty much everything including plenty of mountain guiding in the last couple of years before my op. I think I'll try 5mg for a few more days and then drop to 3.5 (which is easy as it is just half a 5mg and a 1 mg) and see how that goes. As it seems there is no need for tapering at this stage, I have more flexibility to play around with doses and make bigger jumps downwards.

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