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PMR without inflammatory markers

Posted , 8 users are following.

muddyooch
muddyooch

Hello everyone...just joined this group. Very very long story short...I am a 52 year old female who had been in optimal health my entire life...about a year and a half ago became ill...definite dx of Fibromyalgia and Hashimoto's Thyroiditis....approx 3 months ago my symptoms took a major turn for the worse...debilitating joint pain (particularly shoulders, knees hands wrists and ankles) climbing stairs is difficult drying my hair and even putting a shirt on is excruciating....RA Lupus ruled out by Rheumy but PCP thinks its PMR....Sed Rate is 16 but ANA had doubled over the last year...currently on Plaquinel (4 weeks) it's doing

Nothing....Rheumy says no PMR just Osteoarthritis...after begging my Rheumy for relief she put me on week med dose pack of prednisone...dramatic and rapid improvement of my symptoms...Rheumy says "all people feel better on steroids...please help....thoughts anyone??? My quality of life is horrible...

0 likes, 16 replies

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  • EileenH
    EileenH muddyooch

    Posted

    Find another rheumy!

    What on earth makes ANY doctor believe "all people feel better on steroids.." ? They don't. For a start it has no effect at all in fibromyalgia - and while you say you had a definite dx of fibro - was it really? It is very easy to confuse fibro and PMR - until you look at inflammatory markers for some patients (never raised in fibro, raised in some 80% of PMR patients) and, above all, the response to pred. 

    And why any doctor would think that OA mimicked PMR I have no idea - I was told I had OA in my knees "I can feel it" but 13 years down the line with PMR and 8 years of pred - no OA to be identified that I know of.

    ANA is not usually raised in PMR - but it can be raised in healthy people. The fact it is rising may be a pointer - but I don't think it is necessarily pointing at PMR. The dramatic response to pred is characteristic of PMR but not 100% certain, other things will respond to pred too. But I think your rheumy may have blinkers on.

    • muddyooch
      muddyooch EileenH

      Posted

      Thank you Eileen...I am seeing a new Rheumy end of July...(couldn't  get in any quicker) has a great reputation...I have been through thousands of dollars of blood tests and scans over the past year and a half to rule out Lupus and RA among others....thank God my PCP/Internist is listening to my symptoms....he has it narrowed to PMR Mixed Connective Tissue Disorder and Differentiated Tissue Disorder...I do have Hashimoto's...thank you for your thoughtssmile

  • daniel08939
    daniel08939 muddyooch

    Posted

    I can relate 100%. My Rheumatologist took 6 months to finally diagnose pmr. All the blood work suggested it was not pmr. He told me he thought I had osteoarthritis, rheumatoid arthritis, lupis, fibromyalgia, lymes disease or some unknown disease.

    The prednisone worked so well that he reluctantly put me on prednisone. Three years later I ended the prednisone and was symptom free. It lasted for three years and then six months ago I had severe shoulder pain. The blood testes revealed nothing. I was given steroid shots in each shoulder - twice with no relief. I was sent to a physical therapist for 14 sessions - little relief. Ibuprofen, aleve, naproxen - none of them worked. In desperation I went to an acupuncturist. She stuck the needles in and did blood tests. She thought I should try prednisone. What a dumbo I am   -  if it walks like a duck, quacks like a duck - it might be a duck. It finally hit me I have pmr again.

    My rheumatologists told me you can not get pmr more than once. The prednisone worked like magic. The acupuncturist told me I had pmr and should go back to my rheumatologist for long term treatment. The rheumatologists did more blood work and concluded I do not have pmr. I have an appointment on June 9 when they are going to tell me what I have.

    • EileenH
      EileenH daniel08939

      Posted

      I think I might suggest to your rheumatologists that they get up-to-date about PMR. Like almost all autoimmune disorders you can have more than 1 episode in life - the disease is not the symptoms, they are the evidence of an underlying autoimmune disorder and they tend to burn out and go into remission.

      Google this article:

      Polymyalgia rheumatica can recur years after discontinuation of corticosteroid therapy  W.P. Docken

    • eddylynn36538
      eddylynn36538 EileenH

      Posted

      My girlfriend had pmr return after 10 years. Had to go up to 30 mg pred when 25 didn't work. Pain free now and going down slowly. I have never been off pred after 12 years. Currently on 8mg. I am blessed to have a great rheumy wants me to go down slowly and if my markers are up after bloodwork phones to see if I have pain and should go up a bit. I have only been seeing her for 18 months. If I had found her sooner it may not have gone on for so many years. Then again she would have still been in med school. Lol

    • muddyooch
      muddyooch daniel08939

      Posted

      oh my...so frustrating....best of luck to you...thank you for your responsesmile
  • Anhaga
    Anhaga muddyooch

    Posted

    I assume you were given the standard moderate to low dose to test for PMR relief - between 15 and 20 mg?  It's only on high doses that "everyone" feels better on pred!  One of the diagnostic tools to determine whether PMR or not is a "dramatic and rapid improvement" of symptom, so why otherwise were you given the trial???  Doctors are strange.

    • muddyooch
      muddyooch Anhaga

      Posted

      Hi Anhaga! I begged for some relief... only then did she reluctantly prescribe it....I was shocked at the response I had!! She also reluctantly gave me Motrin 800 no refills... right now it's the only thing remotely helping me....she refused to consider anything other than Fibromyalgia and Osteoarthritis.....so I'm moving on to find a Rheumatologist who will listen to my SYMPTOMS and not just blood markers...

  • Danrower
    Danrower muddyooch

    Posted

    I was one of the 20% of those who were seronegative to inflammatory markers.... with PMR.

    A variant or subset is found in a discussion of RS3PE in this forum. I'll try to list it shortly. Good luck. 

  • Danrower
    Danrower muddyooch

    Posted

    Remitting seronegative symmetrical synovitis with pitting edema
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