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New PMR diagnosis

Posted , 7 users are following.

tony09890
tony09890

Hi, I was diagnosed with PMR about a month ago, ESR level was 47 which came down to 37 after two weeks on prednisone.   GP tells me I should be OK in about six weeks.   Don't know where these doctors get their information from, certainly in my readings I haven't come across anyone who had such a miraculous recovery..   Prednisone (15mg) helps but only as long as I do absolutely nothing.   NSAIDs take the edge off the pain but I can't take more than a couple of doses before I become nauseated.   Supposedly there is no apparent cause, I had an elbow arthroscopy about four months ago which led to an infection and then the PMR shortly after, no brainer for me.    PMR affects my arms mostly:   wrists, forearms, elbows, shoulders and neck, and of course any activity like riding my bike and the whole body gets involved, .   I've found if I do anything more strenuous than brush my teeth the pain at night and in the morning is excruciating, some mornings I need help to dress myself..   So now I guess I'll be stuck in an armchair for the next few years.  

I'm also a diabetic (oh joy) but have worked out an insulin regime which requires doubling/tripling my insulin to maintain BGLs.depending on time of day, my GP doesn't get too involved with my diabetes control unless I ask him to, he believes I have it under excellent control.   Also don't see a specialist for the same reason.  

Previously in defence for most of my life I led a very active life: cycling, kayaking, sailing, walking, running, weight lifting and working in my well equipped shed designing and constructing things (something I enjoy immensely), but now I'm down to just the one activity - armchairing, ain't life wonderful.   I'll be seeing my GP in another 5 weeks or so at which time he expects my ESR levels to be in the normal range, from my experience so far I'm assuming after the ESR levels normalise I wiil still have the pain for a few years to come.   I also suffer from OA of hips, back, neck, shoulders, elbows, etc, at my age (64) and with my skeletal condition I don't have too many good years left, not too sure I can handle this, or more to the point I'm not too sure I really want to,- this is just not a life I'm interested in!   Thanks for reading, hoped it might make my feel better venting - it hasn't!

0 likes, 8 replies

8 Replies

  • tony80950
    tony80950 tony09890

    Posted

    Welcome to the clube.  If your GP says you will be better in 6 weeks. GET ANOTHER DOCTOR!  PMR will last anywhere from 2-8 years.  Starting place for pred is anywhere from 30 to 40mg.  Find your spot of where the pains are and GRADUALLY reduce the dosage.  I've been back and forth with different reductions and am now reducing by 1mg a month.  Find a good rhumy to help you with the dosage and side effects.  AND you will have side effects - most common I have had and heard about for the last two years are blury and double vision; lack of stamina and energy;' loss of taste and smell, diabetes; extremity numbness and finally depression.  At times you will feel that nothing is improving.  It is discouraging but I've had slight improvement in the last month, not much but it has raised my spirits incredibly.  Hang in there and keep on the web, i've learned more here than from all the doctors I have seen.

    Good luck,

    Tony

     

  • ptolemy
    ptolemy tony09890

    Posted

    Tony, you do seem to have had a rough time of it. One thing, you should not be taking NSAIDs with pred. They are contra indicative. The pred should allow you to lead a sort of normal life, it should not mean that you sit in a chair all day in pain. Perhaps you should ask about increasing the dose to 20mg? When your GP said you would be OK in six weeks do you think he was talking about your ESR being down to normal and the pred to have improved the pain?
  • tony09890
    tony09890

    Posted

    ESR I think.   From what i've read just about everyone with PMR is on 15mg of prednisone.   I don't think a higher dose would be wise in my case anyway as I am diabetic.   Steroids in low doses cause BGLs to go through the roof and the insulin doseage also goes through the roof.   Any higher dose of prednisone wil cause BGLs to go even higher - and that's not condusive to maintaining life, I would need some other meds and the other meds are not proven to work. 
  • tony09890
    tony09890

    Posted

    Thinking about it, being diabetic is probably why my GP has me on 15mgs of prednisone.   I'l ask him next time I see hime1
    • ptolemy
      ptolemy tony09890

      Posted

      15mg is the normal starting dose, some people go up to 20mg to start if 15mg do not work too well. I can understand your worries with diabetes though.
  • beatrice74480
    beatrice74480 tony09890

    Posted

    Huh your doc knows nothing about Pmr I have been diagnosed since April 2014 am finally down to1 mg of Pred after having a flare up in May.Good luck Pred is a miracle drug but used properly is safe my Doc says .
  • erika59785
    erika59785 tony09890

    Posted

    I feel for you!  You are also dealing with OA which makes PMR tougher to handle.  I have a similar problem, and when needed I will resort to Tylenol (here in America).  I was diagnosed with PMR nearly a year ago, and I am still struggleing.  Presently taking 11 mg of prednisone and reducing slowly by 1 mg a month. 

    Your GP has NO clue.  It is VERY doubtful that you will be okay in 6 weeks. I hope to be much better after 2 years.

  • tony09890
    tony09890

    Posted

    Well, I saw the Doc today and asked about increasing prednisolone.   Nope, he is now sure I don't have PMR and has given me a referral to a Rheumatologist but can't get in see him until December, until then will be coming down off prednisolone.   Fair to say my GP hasn't a clue but I won't hold that against him after all I don't think think any of them do, not exactly a common afliction.    I get the feeling this problem going to become a never ending story?
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