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Polymyalgia rheumatica

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muirkelsi
muirkelsi

I was diagnosed with Polymyalgia rheumatica last November, and the doctor started me on 15mg prednisolone. It was really great, and then started reducing by 1mg every four weeks. I am now seeing a consultant every month, and am down to 8mg daily, but have aching shoulders and arms. I also feel very lethargic. He gave me a prednisolone reduction regime which now has me taking 7mg for the next four weeks, 6mg for four weeks, 5 then 4 then 3 for 8 weeks, 2mg and 1mg for 8 weeks.

Has anyone else reduced by this method?, and will keep going, but would be grateful if they could let me know if it worked.

Kind regards

6 likes, 71 replies

71 Replies

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  • paul93795
    paul93795 muirkelsi

    Posted

    I have been tapering as well and hit a wall at 10mg/day. Moreover, when I went back up to 10 (which had been adequate), it wasnt as effective as before. So I am thinking of going up more and also wondering if going down too fast can cause a reversal in the progress.  On a more positive note, i have found that splitting my daily dosage between morning and night is more effective than a single, daily dosage. Does anyone else experience pain in their hands?  My pain is in multiple places, but sometimes gets focused in a single joint (the knuckle of one finger).
    • tavidu
      tavidu paul93795

      Posted

      Hi paul, about 18 months ago before I got PMR I woke one morning with an aching joint in the middle finger of one hand. Within 24 hours it had swollen and I had no movement in it what so ever and the pain was pure agony. I resorted to taking Nurofen and slowly the swelling went down and the pain ceased. Within two weeks the other hand did exactly the same and I have been having small attacks like this off and on ever since. I put it down to a bit of arthritis but I now wonder if it could have been the start of my PMR.
    • keith36372
      keith36372 paul93795

      Posted

      I was diagnosed with pmr in Sept 2013.  To control the pain I had to take 40 mg of pred.  After 2 months I got under the care of a Rheumy and she started right away weaning me off of the pred.  At 20 mg I began having the pain in my shoulders where I couldn't raise my arms above my waist.  The Rheumatologist put me on Hydroxychloroquine and it took away the pain and allowed me to decrease by 1 mg per month until I got to 3 mg.  Since then my fingers have swollen and expecially my middle finger on each hand.  I can no longer make a fist with either hand.  Should I wait this out as a temporary symptom? 
    • barbara75814
      barbara75814 keith36372

      Posted

      Keith,

      Does the rheumie have any idea about your fingers swelling? I hope so, because as you know, threre are other things that might cause this, and he should be willing to discuss possibilities with you, I think--In other words, I'd say no, don't consider this "a temporary symptom," and try to find out more, hopefully, with the rheumie. Good luck and let us know what's going on, okay?

      Barbara

    • Anhaga
      Anhaga keith36372

      Posted

      That's a high dose for PMR.  Have other disorders been ruled out?

  • veronica52108
    veronica52108 muirkelsi

    Posted

    I have just been diagnosed with Polymyalgia.  Doctor has not put me on steroids yet seeing him again next week as he said my inflammation levels were border line.  is there anyother solution to this problem does anyone know?
  • mrs_k
    mrs_k muirkelsi

    Posted

    If your GP prescribes 15-20mg and within 5 days the symptoms have reduced, its PMR.
  • Dave-California
    Dave-California muirkelsi

    Posted

    It is very good to find others that are going through the PMR problems and seeing how different it seems to be for everyone. I live in California but almost all the PMR blogs seem to be from the UK or Australia or New Zealand – PMR seems to be based on the Northern Europe population background concept. I am a Brit. I’m amazed how little is really known about this disease.

    I have been diagnosed for PMR for 7 months – it just happened instantly one morning when I couldn’t move and was feeling extreme pain in all my joints. I put up with it for a week or so prior to going to the doctor – who immediately diagnosed PMR and put me on 20 mg Prednisone that had an immediate positive reaction and the pain almost went away - and sent me to a rheumatologist. Over a period of 3-4 months I was reduced from 20 mg to 9 mg and the pain level was OK - then at 9 mg it started to get much worse again.

    Regular blood tests taken during this primary period included C - reactive protein and erythrocyte sedimentation rate – both were originally at high levels and are still significantly higher than they should be; especially the erythrocyte sedimentation rate (measures the inflammation).

    The rheumatologist right away pushed me back up to 12.5 mg prednisone and based on the blood tests showing high levels of inflammation and above normal C - reactive protein, determined that I should commence methotrexate in an attempt to reduce and eventually avoid prednisone. So went back to 20 mg prednisone (daily) and 20 mg of methotrexate (once a week). Regular liver blood tests necessary for the methotrexate – and the worst thing – NO alcohol!

    Leg and arm joint pain is significantly better but I started to get significant hand pain – left worse than right – mostly goes away in afternoons as drugs kick in; but still significant in the mornings.

    Currently on 20 mg of methotrexate and down to 10 mg of prednisone (plus the other drugs necessary to stop the influence of the pred and meth on other parts of the body (Fosamax and folic acid).

    I would really like to hear from others about their sequence of the ups and downs of this wretched disease.

    Thanks, David

     

    • tavidu
      tavidu Dave-California

      Posted

      Hi David. I to started off on 20mg prednisone last May but Iwithin a month my doctor talked me into upping it to 25mg as I dtill had pain in my legs and arms. This had an immediate effect and I felt really good but after a month I tried to reduce back to 20mg. Within a week I started to feel aching legs again and a complete lack of energy so at the start of this month have up'd preds again to 25mg and feel much better. Will try and reduce again next month but only by 2.5mg to see how that goes. Good luck.
    • grannyD
      grannyD Dave-California

      Posted

      Hi David, your story could be my story except I am now approaching my third year with this wretched disease. I have been sent to a rheumatologist as my sed rate has shot up recently and I have a history of relapses, therefore having to go back up on my pred doses. The lowest I have managed is 6mg, I am now back on 10 after a sed rate of 44! The question I want to ask you is the methotrexate one as my Rheumy wants me to start on that to try and get my pred dose down, seems I am not behaving in the right way. Also very interested in the discussion re rheumatologist seemingly determined to try and find another diagnosis, testing for everything under the sun, as is mine, but I have been reading this thread (long time reader, first time contributor as Bart might say) and I know I have PMR, it is classic, and the flares happen when I reduce, end of, otherwise I manage just fine with my love/ hate relationship with prednisone. The research I have done tells me that there is very little to be gained from methotrexate in cases of PMR. Is this how others have interpreted it? I have no intention of giving up my occasional glass of wine unless it can be proven to me that methotrexate is the answer. 

      I don't know how far away you are from the earthquakes David, but I am from Christchurch New Zealand and my excellent GP who diagnosed me at the time put my PMR down to the stress of our earthquakes. All the best.

    • Dave-California
      Dave-California grannyD

      Posted

      Hi grannyD

      Regarding my moving on to methotrexate and hopefully easing out of pred - my rheumatologist seems to be quite 'pushy' about reducing the pred as soon as possible. 

      In June of this year (after pred ups and downs) I was at 12 mg pred (per day) and 12.5 mg of methotrexate (once per week) was added. I was still having leg and arm joint pain for substantial part of the day and hand pain was lousy.

      In July sed rate blood test was 60 and c-reactive protein was still above 6. Pred was increased to 20 mg (per day) and methotrexate to 20 mg (once per week). Leg and arm pain seemed to reduce for most of the day but hand pain remained substantial.

      August sed rate went down to 25 and I maintained the methotrexate at 20 mg (once per week) and in bi-weekly steps I am down to 10 mg of pred. Arm and leg joints are still much better but still have the hand pain for at least 50% of the day from when I wake. I don't hear much about hand pain on the PMR blogs - I might open up a new discussion to see what others are doing about that.

      I have more blood tests and doctor visit at the end of this month (September) so I'm interested to see how pain versus pill is working.

      Like you say - giving up the glass(es) of wine is a big item - I'm currently a 12 week 'teetotaler' - not fun. But, if the methotrexate keeps allowing the pred to reduce, I'll be happy and maybe the long term misery will be shortened.

      Substantial earthquakes haven't bothered us here in Los Angeles for quite a few years - PMR and lack of wine are currently the big issues !!

      Keep smiling and all the best

      David

    • barbara75814
      barbara75814 tavidu

      Posted

      I'm not a doc, of course, but were it I writing this, I would reduce by only 1 mg. per month--no more. There is no hurry, really, and most people find reducing by 1 mg. per month causes relatively few problems. Just an idea--

      At any rate, much luck with this--

      Barbara

    • barbara75814
      barbara75814 grannyD

      Posted

      Were it I, I would forget the methotrexate, especially as you say "I manage just fine with my love/hate relationship with prednisone." If you're managing that, you're doing quite well, I would venture. And I don't think you should need to give up your occasional glass of wine, as long as it's "occasional."

      Sorry about the earthquakes. I think I would stop having so many sed rate tests done, and simply proceed based on how my body feels.

      Barbara

    • Anhaga
      Anhaga barbara75814

      Posted

      Agreed.  My doctor runs tests every three months, but always emphasizes that we are treating the symptoms.  She also lets me reduce at my own pace. smile

       

    • barbara75814
      barbara75814 tavidu

      Posted

      To me, 2.5mg is too much to reduce by. I myself never reduced by other than 1 mg. a month. I did this throughout my year of getting off the pred, and it worked fine. When I was at 2 or 3 mg. (can't remember exactly), I used the slow-slow-almost stop method and that took me to the end. 

      Usually during the year I would have a slight but always noticeable increase in symptoms after a reduction, but I just tried to tolerate them and watch them decrease after a few days.  I never considered increasing the Pred. This worked all right for me, as did some light calisthenics I did routinely. I rested as often as I could, also.    

      Barbara

       

    • Anhaga
      Anhaga tavidu

      Posted

      Given your experience, why not try a slower reduction?  Are you reducing all at once, overnight, or tapering into the new dose?
    • barbara75814
      barbara75814 tavidu

      Posted

      You might reduce next month by just 1 mg, I should think, and stay at the new level for one whole month. A reduction of 2.5 mg is just too high, in my opinion, but good luck with it--

      Barbara

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