Conflicting medical diagnosis input needed

Posted , 8 users are following.

Have had normal aging aches for years I am 70. Otherwise good health. Two almost 3 months ago upper arms began to ache then shoulders and neck. When thighs and hip area became very painful And so much fatigue could not function I had to go to local walk in medical care clinic. Blessed Day caring capable doc exam questions etc. Nailed PMR. Began. Pred. Better in 2 days! Referral to rheumatologist, blood tests negative for inflamation. Rhm doc declared fibromyalgia and ordered Lyrica. Duh...PMR is rapid onset and specific musicle pain and weakness whicnh responded pred. Fibro is neurological pain widespread and processes over time. Rheum doc says no pred without positive inflamation tests.

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9 Replies

  • Posted

    Rheum doc says no pred without positive inflamation tests.

    Sorry to be so blunt, but your rheumatologist does not know what they're talking about.  There are a very substantial percentage of those with PMR who have no positive inflammation tests.  I am one of them. 

    Find a new rheumatologist.  They're wrong.

     

  • Posted

    My rheumatologist told me that sometimes the inflammatory markers are not elevated with PMR but if there is improvement with Prednisone, it can be considered diagnostic of PMR. But every Dr. is different. Maybe try a different rheumatologist if that is an option for you. 
  • Posted

    Then you need a clued-up rheumy. About 20% of PMR/GCA patients present with normal inflammatory markers. I did. Fibro DOES NOT RESPOND TO PRED - at all. So if your symptoms responded to pred it isn't fibro. 

    I take it you are in the USA? In the UK you would only have to convince your GP. Not sure what you can do besides find a doctor who knows what they are talking about - because he doesn't.

  • Posted

    I agree with the others. I don't have the markers but respond to Pred. My GP is happy with that based on his experience as well as mine. Some rheumys are weird!!!

  • Posted

    Thank each of you for the fast and validation of your replies! The

    First Doc said same things.... inflammation markers not always e!evated with PMS and he feels rapid improvement to Pred is best diagnosist tool. Unfortunately he does not have private practice just Urgent Care services. I will find a GP as soon as possible next week! So tkf for this group....and the encouragement from those on the same path.

    • Posted

      Unfortunately susan 08542, you have run into one of the Rheumies who thinks they know it all. Good for you if you can find one that will listen and learn. Each individual case is different, I have been lucky to have found this forum and only wish my Rheumy had

      Good luck on your journey, think positive and try and keep a smile on your face, it helps. SMILING 🙂

  • Posted

    Once you have been on Prednisone the bloodwork will not reveal inflamation as it has been somewhat arrested. Doctors need to realize this.   I hope Eileen answers you in her great wisdom.

    Kerry

    • Posted

      I forgot to say that in my response above - once you are on pred the markers become relatively meaningless unless the dose is nowhere near enough in which case they may be raised. Unless you are a person with normal markers!
    • Posted

      Yup! You said it perfectly.

       I am wondering if there might be a way to clearly put out this information to all rheumatologists. They are risking the lives of people who might develop GCA.  The doctor who initially diagnosed me was a gerontologist who had experienced PMR before.  He said the only way we would know is if I was significantly better after taking the Prednisone--and of course, I was.  I had been visiting in PA and returned to  choose a  rheumatologist in the NW (the gerentologist was my daughter's father-in-law from PA.) Suddenly my head and jaw and eyes exploded in pain and the new docotor wanted to make sure I did not have a tumor  etc, so ordered an MRI where we found I had had a small stroke a few weeks before. We upped the Pred.

      Finally I returned to Arizona where I live. A new rheumatologist insisted I have the temporal biopsy even though it is known it will most likely turn out negative no matter what. (The vascular surgeon who performed the biopsy said he had done hundreds-- almost always negative.) But because the new doctor claimed it was the gold standard, I did it.  When it was negative he stated, no you don't have GCA.   What a nightmare. I now have to communicate with the good doctor in NW and the late Dr. Gilden, now Dr. Nagel in Colorado.   I feel lucky I am alive and wish we all had better coordinated care.  I am very thankful for this forum and have learned so much.  Thank you.

      Kerry

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