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Diagnosed with PMR 3 months ago

Posted , 7 users are following.

erika59785
erika59785

Much to my dismay I have noticed that the prescribed prednisone dosage of 15 m for 1 week and then lower to 10 mg by my Primary Care doctor did not take care of my shoulder and lower back pain.  I needed to go up to 15 and even 20 mg to be painfree,  always worrying that the steriods would do harm to my health in general.  I was also diagnosed with RA a few years ago when 5 mg Prednisone would be enough to take care of flares.  

The PMR diagnosis was a total surprise because I was in such pain with especially my right and then my left shoulder.  Any repetitive movement would cause a problem.  I had to quit my exercise class which I liked.  Dreadful! 

I happen to read the informative Patient UK article about SELF-ADJUSTING STEROID DOSE WITH PMR which helped to explain to not lower suddenly....not more than 1 mg for a length of time.

I am still in the informative stage as this is new to me, and I can still hardly believe that this is happening to me.  I had never heard of Polymyaglia Rheumatica before.

It looks like that only this UK Medical Website is informative.  I live in  USA.......

It feels good to talk/write about it......one does not feel quite so alone with this problem if one can share it with others who understand and suffer the same.

Right now my left arm is hurting.....and I need to stop typing.

I feel I have a long road ahead with PMR......

Thank you for your input and caring.

Erika

4 likes, 14 replies

14 Replies

  • tavidu
    tavidu erika59785

    Posted

    Good luck Erika, it will be a long job but hopefully a full recovery at the end of the road. A general rule for reducing is no more than 10% a month which I start in October so will come down from 25mg to 22.5mg.

    All the very best, Dave

    • erika59785
      erika59785 tavidu

      Posted

      Thanks Dave,

      I will try the no more than 10 % a month!!

      Hopefully, it will help.  The pain is truly awful!

      Erika

    • erika59785
      erika59785 tavidu

      Posted

      Thanks Dave,

      I will try the no more than 10 % a month!!

      Hopefully, it will help.  The pain is truly awful!

      Erika

  • EileenH
    EileenH erika59785

    Posted

    A normal pred taper as your doctor gave you will never deal with PMR. What we call PMR is not the illness - that is an underlying autoimmune disorder which causes inflammation and swelling which, in turn cause the pain. The pred combats the inflammation and so relieves the pain and stiffness. As long as the autoimmune disorder is going on you will need some pred. The starting dose of 15 to 20 mg should be kept for at least 6 weeks until all the symptoms have improved as far as they are going to. Then you start a slow reduction to find the lowest dose that will control the symptoms. It is unlikely to be zero straight away but done slowly enough you should get to a noticeably lower dose soon and in time much lower.

    Follow this link to find further links to other useful and reliable sites and a paper about PMR management aimed at GPs/PCPs so your doctor shouldn't get upset at you pointing it out to him/her. 

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    In posts 4 and 5 on the thread you will find a very slow reduction plan that has been successful for many people already.

    Dave - it isn't 10% per month, it is that any reduction should not be more than 10% of the current dose. 10% per month may still be too fast for sme people. The reduction plan I have just mentioned is actually less than 10% until you get below 10mg and each reduction is spread over about a month. The pain associated with bigger reductions isn't PMR, it is steroid withdrawal pain and tht can happen in some people even at the dose you are on. Consider doing 1mg at a time every few weeks when you start your reduction - I have come across several people who couldn't do more even above 20mg.

    • tavidu
      tavidu EileenH

      Posted

      Thanks Eileen, will take that on board. All the best, Dave
    • erika59785
      erika59785 EileenH

      Posted

      Thanks, Eileen

      I agree with you.  I will try the 10 % reduction per month.  I am on 20 mg at the moment.  I feel good, and I always think I can reduce by 5 mg when I am without pain, but 5 mg is too much.

      I will follow the link.  I WISHED THE DOCTORS WOULD AGREE!!!

      I will give it a try and talk to him on Tuesday when I see my RA doctor.

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, I have a question to ask you.  I do know that I suffer under an autoimmune disorder because of indication of Rheumatoid Arthritis which had been controlled with a Plequenil for years and a low dose of 5 mg of Prednisone.  The newly diagnosed PMR problem I find much worse and more painful.  My RA doctor wants me to take Methotrexate for my autoimmune disorder which ---so I understand ---- is not useful for PMR.   I do fear this kind of medication because of the side effects and it can cause cancer.

      May I ask your opinion about this? 

      Thank you so much.

      Erika 

       

    • EileenH
      EileenH erika59785

      Posted

      Methotrexate is the first line medication for RA in the UK - it is the first to be tried and is used more than any other. It isn't much use in PMR - it doesn't touch the PMR itself and the only positive is that if you are lucky it may mean you can manage with a lower dose of pred. However a few people I know used it and were able to reduce their pred for a while - and then had flares that sent them back to the original dose of pred. My suspicion is that the people who benefit from methotrexate for PMR are the ones who didn't actually have PMR but had developed late onset RA which can appear almost identical in the early stages. The latest thinking seems to be to NOT recommend the use of it in PMR as the eveidence is very poor - one study said it worked to allow lower doses of pred, another said it didn't and a third was inconclusive. And they were all fairly small trials. 

      If you look at the potential side effects of anything you wouldn't take it - and that includes aspirin and paracetamol as well as most other pain killers! Your PMR probably needs a bit more than 5mg pred for a while - but the RA doctor maybe feels that using mtx instead of the plaquenil might kill two birds with one stone. 

    • erika59785
      erika59785 EileenH

      Posted

      Eileen, thank you for your input.  It was actually my Primary Care Doctor 3 months ago who diagnosed the PMR because of arm/shoulder pain first in my right one and then in my left.  I was initially treated for bursitits in my right shoulder which only the Prednisone took away the pain.  When I saw again my RA Doctor he doubted the diagnosis initially, and he insisted that I should try MTX which would take care of it......Plequenil did not help me anymore for RA.

      Your opinion about MTX helped me to decide not to take it.  I hear that it is terrible on the stomach and other side effects.

      My Primary Care Doctor thought I would do okay with 15 mg for a week and then go down to 10 which did not work well.  I have had 3 flares within a 3 months period.  I hear from you and Dave that I should taper by 10 % monthly.  I am now on 20 mg because of shoulder and back (girdle) pain.

      THANK YOU SO MUCH for answering right away.  This is a wonderful website in the UK.  I feel I am not all alone with this painful health problem.

      Erika

       

    • EileenH
      EileenH erika59785

      Posted

      If you go to the link I gave you 2 days ago (also on this site) you will find a paper by the Bristol group, led by John Kirwan, about suitable reductions in PMR. It is aimed at GPs so do print it off and give it to your PCD to read. It suggests 6 weeks at 15, 6 weeks at 12.5 before sticking at 10mg for a year. As I said, for some people that 2.5mg is too much at one time and leads to what is apparently a flare. The most common cause of a "flare" is reducing too fast or too far - and to reduce from 15mg after a week is far too soon, the existing inflammation hasn't been combatted in that amount of time. I am convinced that reducing the dose VERY slowly, once the inflammation has been dealt with properly, means that using other drugs to help you reduce is unnecessary. It is worth trying at least.
    • erika59785
      erika59785 EileenH

      Posted

      Thank you very much.  I will go to the link you gave me 2 days ago and print it out.  I live in Portland, Oregon.....the medical care is not as good as it used to be.  So thanks to your excellent website I am able to get information which has merit and I can trust.

      Much appreciated.

      Erika

  • heather39822
    heather39822 erika59785

    Posted

    Hi Erika... I also was first diagnosed three months ago; also was put on the prednisolone regime with a rapid weekly dose reduction of 10mgs that left me struggling with the neck, shoulder and arm pain; and had to start all over again last month at 40mgs, reducing by 5mg every two weeks. According to the valuable advice on this forum, that is still too fast. However, I live in Zimbabwe where there is NO information about PMR, and I feel I have little choice but to go along with my general practitioner's recommendation.

    I have found the postings on this forum a lifeline to others' understanding and support of this seemingly largely unknown ailment. They help me feel less alone in facing what appears to be a long and rocky journey. I look forward to reading of your progress. Heather

    • erika59785
      erika59785 heather39822

      Posted

      Hi Heather,

      I feel for you, especially having limited  information about PMR where you live.  I don't think you need 40 mg......20 mg will take care of the pain/flare.  After 5 days taper down to 17 1/2 for 5 days.  Then 15 mg for 3 weeks.....12.5 mg for 3 weeks.

      This is the Maintenance Schedule for PMR Medication I found by 2 doctors as of this year.

      It is indeed a long and rocky journey for PMR sufferers, and so many people do not know about the problem.  Even some doctors do not know how to treat it well and would even prescribe Methotrexate which DOES NOT help.  I had this problem trying to convince my RA doctor that I had this new pain in my shoulders and lower back.  He only hesitantly agreed that I might have PMR.  My Primary Care Physician had more knowledge and prescribed Prednisone for it, because this is the only medication which helps the horrible sick feeling, being VERY tired and in utter PAIN.

      Take care Heather.  Hope, this helps to read my story.

      Erika

    • erika59785
      erika59785 heather39822

      Posted

      Heather,

      I just read a VERY good response ......no more than 10 % reduction a month of the starting point of Prednisone.  Like in your case, it would have to be about 5 mg less a month.

      Wow, this is so tough, but Prednisone works and makes life liveable.

      The Adrenals are exhausted and Prednisone helps the problem as long it is respected with SLOW reduction.  SOMETHING I HAVE TO LEARN MYSELF!!

      Take good care.  I would like to hear from you again.

      Erika

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