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Polymyalgia rheumatica

Posted , 35 users are following.

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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  • Marilyn2501
    Marilyn2501 muirkelsi

    Posted

    Hi I started PMR in March had a bad flare up Easter and was on 20mg I saw a specialist who confirmed PMR and since had two shoulder injections which in fairness has helped slightly but by the time I got to see specialist I was on 10mg anyway but my specialist in June said in July drop to 9mg then in August 8mg etc well since July 1 I have dropped it to 9mg and I can certainly tell the difference as I am very stiff in both my arms and in pain and also like you very tired so it has made a difference which makes me think that I should perhaps contact specialist to point this out but I am giving it a few more days to see if things improve but I doubt it so if you feel you need to get things adjusted ring your gp 
    • keith36372
      keith36372 Marilyn2501

      Posted

      I was diagnosed with pmr 3 years ago.  My sed rate was over 60 and started out with 40 mg of pred.  It was a miracle with no pain at all.  I did lose 20 pounds during this time.  When I got to 20 mg my shoulders hurt so bad I couldn't reach for something in the cupboard above my shoulders.  To help me with my withdrawal the reumy put me on another medication to help called hydroxyurea.  It took a month for this to take effect and I also took 1 alleve morning and night.  I was totally off of pred within two years.  No more Hdroxyurea or alleve..  But,  my fingers had a lot of swelling and stiffnes which has finally gone away, I think it was a sideeffect of withdrawing from Pred.  Keep up the good fight and it will get better

      Keith

  • escot
    escot muirkelsi

    Posted

    Yes I am on this reduction I am now on 7mg next week on 6,I have been told to reduce 1mg per month,but I have not been asked to see the consultant every month.I too have achy and painful shouders and arms,I cannot stretch my arms to pick anything up and I too feel lethargic and fatigued,(I was diagnosed last July)

    I a more or less back to where I started, re the pain and aches.....

  • debbie27473
    debbie27473 muirkelsi

    Posted

    Many of us can relate to your story! I was diagnosed in Jan. this year and was also told to reduce by 2 1/2mg after one month then by 1mg per month. The first reduction was way too steep. Within two days, the pain returned in force. After a telephone consultation with my doctor, she suggested going back to 15mg for four weeks and then reducing by 1mg per month. I got dow to 14mg no problem but as soon as I tried reducing to 13mg the pain returned and with it the most dreadful tiredness and lethargy. Also my inflammatory level shot up to 35. I am now on 13 1/2mg every morn. Pain is still present but much reduced. I still can't shake the sudden onset tiredness though. I am trying to eat more appropriately (hopefully this will also halt my rather steep weight gain). Taking pred with it's side effects is bad enough but if you are taking too low a dose to manage your pain it also seems futile! As I am sure more experienced people will tell you, perhaps you are trying to reduce too fast. I think accepting that this condition is going to take a long time to conquer is one of the hardest things we have to come to terms with, especially as a lot of us are misled by our gp's (unintentionally I'm sure) when we are first diagnosed. I am lucky that my gp lets me manage my own levels of pred, as do many others on this forum. Only we know our pain levels. What dose were you on just prior to the pain returning? Perhaps you could revert to that dose for a little while to give yourself a chance to recover before trying any further reduction. Whatever you decide, I wish you all the best and please keep us updated with your progress. This forum has been an absolute lifeline for me as everybody on here understands exactly what you are going through! Good luck.
    • escot
      escot debbie27473

      Posted

      Dear Debbi,

      I expect that you have read my information previously re my problems re Rheumi's comments, perhaps you may wish to read them and let me have your comments

    • tavidu
      tavidu debbie27473

      Posted

      Hi debbie, just wanted to say thank you for an excellent comment. For anyone that has just been diagnosed with PMR this will give them a good idea of what to expect in the future, well done and good luck with your quest to rid yourself of this crippling disease. Dave (tavidu)
    • debbie27473
      debbie27473 escot

      Posted

      Hi escot. Sorry it's takrn me a while to reply. When I was first diagnosed, I wondered whether I would be referred to a rheumatologist. Having studied many posts on this forum, I am now so glad I wasn't! I'm certainly no expert or medical professional but it seems that rheumatologists do not like confirming pmr as a diagnosis! Am I right, do you think, that they seem to concentrate their focus on blood test results rather than the pain levels and other symptoms being suffered by the patient? GP's seem to treat the whole person as it were and to be less rigid in their views. (Incidentally, speaking from personal experience, I think this could apply to other specialists too). I would highly reccomend that you visit the pma support group north east website and select 'medical information' on the left hand side menu and read the research document by Bhaskar Disgupta. It is extremely relevant to your struggles re steroid reduction. He also thinks that pmr should be called polymyalgia syndrome. I wonder if this would help specialists to differentiate between pmr and other muscular disorders such as rheumatoid arthritis. Let me know your thoughts. Take care, Debbie
    • escot
      escot debbie27473

      Posted

      Dear Debbie,

      Thank you so much for your reply,I am sure that you are right, I expect that you have read all the information that I have put on this site with regards to the My GP stating that she was 99%sure that I have PMR, then the Neurologist stating the same, and now the Rhuemi that I saw,who says they were wrong,as he put in" He is the Expert and he says that I have Fibromyalgia and should not be on steroids,and with PMR you do not have any pain.....so if he is so sure about this, what is the pain from,? that he never followed up,but all I know is that when I started on the 20mg of Preds, the pain disapeared,and until I got down to 10,it started to come back in again. he did not help by telling me that  coming off steroids, that I was going to experience pain like I had never had in my life, and when I asked him for help in this matter, he told me that he does not "do pain" and to find myself pain clinic....when I started the reductiion, I did feel achky and that Accky is now Pain, and is causing me to be miserable etc and also stops me from doing things simple things like even holding a kettle,and ironing etc

      Almost everyone I know who has PMR

    • debbie27473
      debbie27473 escot

      Posted

      Hi escot

      What I think I would do in this situation (and obviously this is only my opinion. I am not qualified to tell anyone what they should do) is ask my gp if she was willing to manage my pmr and then stop seeing a rheumi! As has been pointed out many times on the forum, fibromyalgia does not respond to pred. As your pain decreased dramatically on 20mg and reappeared at 10mg it seems like classic pmr.

      Incidentally, I had my trial electronic implant yesterday so I will finally find out how much of my leg pain is due to my spinal stenosis and how much is the pmr! It feels very strange at the moment, having these electronic pulses tingling away up and down my leg but hopefully it will give me back some increased mobility. Hurt like blazes having the wires put in so I hope it was worth it! Quite sore from the op today but tomorrow I shall try going for a walk and test it out.

      Take care, Debbie

  • tavidu
    tavidu muirkelsi

    Posted

    Hi muirkelsi. Have not started on my reduction yet as I have only been on Pred for about 5 weeks but my doctor advised at the start that reduction (when it happens) would be very similar to the regime that your consultant has put you on so it seems very logical so please let us know how you get on. Good luck.
    • muirkelsi
      muirkelsi tavidu

      Posted

      Hi Tavida,

      I will certainly let you know if things work out, and I am keeping my fingers crossed. I am much better in th evening, and really not nearly as bad as some people in the forum have experienced. I just feel so tired!

      Regards,

  • Judygirl
    Judygirl muirkelsi

    Posted

    I was diagnosed in November also and was able to quickly reduce to 10mg

    from 15mg, however, it has taken five months to get down to 7mg.  If I hurt

    I have been going back up 1 mg. but am trying to determine if there are other

    ways of dealing with the hurt.  I had a very busy few days and my shoulders

    and arms hurt and my fatigue was monumental, however, after a very relaxing

    sleep with my bed tipped just a little to take the stress of the shoulders, I feel

    much better and am still at 7mg.  It really is a matter of trial and error as we are

    all experiencing such different scenarios.  I would love to be off the prednisone

    as my legs have such terrible bruising but I must stay the course and ignore the

    cosmetic effects of prednisone.    I wish you much success with all this and any

    positive results you may get would be greatly appreciated.   All the best.

     

     

  • ronny78296
    ronny78296 muirkelsi

    Posted

    I came to this superb forum to ask for advice and have mostly found it through this thread, as I am having similar experiences. I was diagnised with PMR in mid- September 2013 and thrived on treatment with 15mg Prednisolone reducing to 12.5mg by mid-February. As I was travelling in Australia and New Zealand I was in no hurry to reduce further in case of a flare-up. Back in the UK my ESR was normal in February and since then I have been reducing by 1mg a month like others. My GP has been anxious to reduce the dose but has not pushed me as I still have arm and shoulder pain. My ESR is still normal but because of the continuing pain (which is usually bearable, and I gather from this site that very few people are completely pain free), I am reducing by 0.5mg a month. I have been on 7.5mg for three weeks and some long distance driving has left me with increased shoulder pain and an unusual level of fatigue. One of the long-term experts on this site told of the difference between a flare-up and a body protest when the level of steroid is reduced. I am due to reduce to 7mg next week. My question is how long to wait it out? When can a protest become a flare-up which I want to avoid!
    • mrs_k
      mrs_k ronny78296

      Posted

      Ronny

      Before you take the drop, clear the decks for about 5 days (and I mean clear the decks) take the drop and wait and see, if after 5 days you still have discomfort - that means it is not steroid withdrawal symptoms but that it is too soon.   It is difficult to decide which is which as the body always protests when it has got used to something and you take it away. 

      Alternatively on another thread there is a reduction plan.  But if you want it in full, send me a PM.

      I would try a Bowen Technique therapist.  I don't know how it works but it does help enormously with pain pf many sorts.

    • ronny78296
      ronny78296 mrs_k

      Posted

      Thanks so much for the advice. However, it is  now three weeks after my last drop from 8mg to 7.5mg - only 0.5mg and it's the most painful drop I have made though nothing I'm sure compared with what so many others endure. Would your reduction plan help from now on do you think? If so, please send. Thanks. 
    • mrs_k
      mrs_k ronny78296

      Posted

      Yes Ronnie, I think it would, it has helped lots of patients, it was devised by patients for patients and it takes 29 days to make a drop.  However I can't post it here, its too big.   Google pmr gca northeast and email using the google email address and say you are after the reduction plan from mrs K.

       

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