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Sould I have MRI if blood labs are negative for PMR ?

Posted , 7 users are following.

judy02533
judy02533

I had blood work done today to see if I have Polymyalgia Rheumatica.  How common is it for the results to be neg ,but still have PMR ?  I have all the symptoms.  Should I insist on a MRI.  I also have symptoms of GCA.

 

0 likes, 10 replies

10 Replies

  • iellen32
    iellen32 judy02533

    Posted

    Based on the symptoms you have, for your own good you should look for a second opinion seeing immediately another doc.

    If you have GCA you would need to start the treatment as soon as possible.

    Vision is too precious to loose.

    I have GCA.

    Take care.

    xxx

  • Sheilamac_Fife
    Sheilamac_Fife judy02533

    Posted

    If you have symptoms of GCA, they should have started you on a big dose of Prednisolone immediately! You could lose your sight!

    re the test results. I believe that around 25% do not have raised inflammatory markers. The symptoms are key!

    hope you get treatment soon.

  • EileenH
    EileenH judy02533

    Posted

    There are no blood tests that can be "positive" or "negative" for PMR. PMR is the name given to a set of symptoms caused by an underlying illness, in our case an autoimmune one. About 1 in 5 patients do not have the raised so-called inflammation markers (ESR and cRP) so the decision there must be made purely on the clinical picture: the symptoms and response to a moderate dose of pred (15-20mg max).

    As far as I know, an ordinary MRI will show nothing much in PMR - unless the symptoms are due to vasculitis in larger arteries when it may show subclinical inflammation if they are affected and if there is bursitis/synovitis. Even then, a straight MRI or CT is unlikely to show very much unless the PET form is done. If MRI worked to confirm GCA they would use it rather than the temporal artery biopsy. PET MRI or CT are often not available in smaller hospitals.

    If you have symptoms of GCA what are they intending doing about that? PMR is often a symptom of GCA so can't be seaparated as a different entity.

    • EileenH
      EileenH

      Posted

      PS - please read the second of these posts if there are still 2!!!!!! Blasted internet!
  • judy02533
    judy02533

    Posted

    Thank you all for your responses.  My doctor just mentioned PMR to me yesterday and then I had the blood work.  I came home and read about it and of course reading about GCA scared me to death.  I have every single symtom except the vision problems.  Now, I don't know what to do next.  Doc told me if the tests  showed no inflammation, then I would continue to take celebrex. 
    • EileenH
      EileenH judy02533

      Posted

      IF you have normal ESR and CRP and your doctor refuses to acknowledge you may be one of the 20% or so who never have raised blood markers, then find another doctor. GCA is a clinical diagnosis - the blood tests are just part of the jigsaw and may not fit his preconception. 

      I assume the Celebrex does zilch? If it doesn't, ask the GP(?) to at least allow you to try a week of 15mg pred as described in the Bristol paper you will find the link to here:

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

      If it helps relieve the symptoms then if he won't consider PMR and GCA then find someone who will.

      If at any time you DO develop ANY visual symptoms then get to A&E/ER whatever it is called where you live as quickly as you can. Be insistent about your symptoms - above all when it is any visual ones but the jaw claudication, scalp pain and headache are fairly conclusive. 

    • judy02533
      judy02533 EileenH

      Posted

      Yes.  I am going to ask for a referal to see specialist no matter.  With PMR, are there any symptoms with memory such as forgetting how to spell words.  I have no other memory problems except spelling. I do have jaw claudication, headache, and very tender scalp.  But the tender scalp comes and goes.  Is that typical?
    • EileenH
      EileenH judy02533

      Posted

      Yes - jaw claudication, scalp tenderness and headache are ALL very typical of GCA and your doctor shouldn't be ignoring your complaint of them. They are clearly mentioned in the Bristol paper.

      I had the scalp tenderness for about 3 weeks - and then it disappeared altogether! I didn't know what I know now so hadn't worried about it! I also had jaw pain when chewing but didn't really have a headache. Once I started on pred that went away too. I mentioned it to the local eye specialist at a meeting in the NE of England - she said she'd never heard of that before and she did a lot of work with PMR and GCA. 

      Memory - it can have effects, brain fog is often ascribed to pred but PMR can do it very well too! I found I sort of had dyslexia - I spelled words the wrong way round at times. If I'm having a flare I notice it even now - and I type a lot! It isn't all words though which is strange. 

      You can have GCA and many of these symptoms without ever having any visual symptoms - but if there is any sign of double vision, blurred vision, especially in the morning when you wake or after a nap, dark spots or anything peculiar with what you are seeing then it is a medical emergency and off to the ER as quickly as you can. My daughter is a paramedic and they are taught that: those symptoms mean GCA is a possibility, and that means off to hospital just as if it were a query heart attack or stroke.

  • john1717
    john1717 judy02533

    Posted

    I am concerned about what you have said. Like others on here have said: See another doctor as soon as humanly possible, preferably a rheumatologist. My family doctor suspected PMR and referred me to a rheumatologist right away who immediately diagnosed PMR based on the classic symptoms. A follow up blood test showed a very elevated sedimentation rate. You need to get on prednisone right away. If for some reason you don't have PMR, taking prednisone for a short time shouldn't cause any problems, and you could be saving your sight. Good luck. Keep us posted.

    John

  • Danrower
    Danrower judy02533

    Posted

    I was sero-negative, which led to 8 week delay in treatment for PMR. No GCA symptoms.

    PMR is suffering. 8 weeks of pain.

    With GCA symptoms, do not wait. If I had GCA symptoms, I would go to the emergency room. You can't wait 8 weeks with GCA.

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