Polymyalgia and giant cell artritis

Posted , 10 users are following.

I suffer with Polymyalgia and giant cell artritis... I have not responded to steroids... any ideas Why?

0 likes, 17 replies

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  • Posted

    What dose are you taking of steroids are you taking? How were you diagnosed? 
    • Posted

      I paid to see a rhumatologust ... but my GP first picked it up.
    • Posted

      Hi Frank, if you have not responded to steroids after 5 weeks what do the doctors say? They must realise there is something else wrong. Usually the results are magical after a couple of days if not within hours.
    • Posted

      UK here. Wales. I've had blood tests which confirms Polymyalgia rumatica and giant cell artritis. Not respinding to steriods. .. and the tiredness has become completely debilitating. I'm so weak most off the time. My consultant suggested upping the dose of steroids to 60ml but my gp doesn't want to do this. She has arranged for me to have other tests at my local hospital next week.

  • Posted

    Frank, Are you in the USA?

    What tests and symptoms led to the diagnosis?

    Your tell of pertinent information will help those on here help you.

    Blood tests, specific symptoms, time line, 

    Something doesn't sound right, 40 mg, no relief.......

    Lots on here are sleeping now, or just waking, in UK or Europe.

    Good luck

    • Posted

      oops, got my clock wrong... It's 6 or 7 pm across the pond in uk, so you will be getting response soon.

    • Posted

      UK here. Wales. I've had blood tests which confirms Polymyalgia rumatica and giant cell artritis. Not respinding to steriods. .. and the tiredness has become completely debilitating. I'm so weak most off the time. My consultant suggested upping the dose of steroids to 60ml but my go doesn't want to do this. She has arranged for me to have other tests at my local hospital next week.

    • Posted

      My symptoms are aching muscles and lots of stiffness without my body... huge lethargy too of course.
    • Posted

      Frank, there aren't any blood tests that confirm PMR and/or GCA at this time.  There are two blood tests, ESR and CRP, which can show inflammation but not exactly what is causing it or where it is in your body.  GCA can often be confirmed by a temporal artery biopsy where they look for large cells in the portion of artery removed.  If no large cells are found that doesn't mean you definitely don't have GCA because sometimes the large cells can escape the small area removed for biopsy.  This test has to be carried out within a very short time of starting steroids, a week or two, otherwise the steroids will have tackled the large cells.  However, if large cells are found in the specimen removed, then that can be taken as a positive result for GCA should there is any doubt at any time in the future.  Sometimes, patients need a higher steroid starting dose (60 or even 80mgs) to get control of the inflammation although 40mg proved sufficient for me, improving my symptoms within just a few hours.  If any Dr suspects a patient has GCA, they should be sent immediately to a rheumatologist for confirmation, especially if the inflammation affects the temporal artery as, untreated, that carries a risk to vision.  You need to go back to your Dr, or preferably another Dr in the practice who just might be more knowledgeable in the wiles of PMR/GCA, but if you have any sign of disturbance with your vision, go straight to A&E.  Certainly, your 40mg dose should have relieved the pain and stiffness in your body - the usual starting dose for 'just' PMR is 15-20mg.  I can't believe that your GP has gone against the advice of the consultant to try increasing the dose to 60mg.  If that didn't improve your symptoms then something other than pure PMR/GCA needs to be looked for.

    • Posted

      Hi Frank75779,

      I also have PMR/GCA and my Rheumy started me on 60mg of Predinsone. The 60mg helped me within hours of taking it. I hope this helps.

  • Posted

    If you have GCA the the dose you were prescribed is rather low. I think 60mgs. is more usual. Was there a reason for this? Was  there any other input from your doctor or rheumatologist? 

    I only had PMR and 30 gave me immediate ( within hours ) relief. I'm not sure whether your 40 would relieve the PMR pain given that you have GCA as well.

    When you say you have not responded do you mean that, literally, there has been no response? If so I would expect there to be further investigation.

    • Posted

      Hello... there has been vertually no improvement. I am having further unvestigations at my local hospital next week.
    • Posted

      Do hope this will be reassuring and you can get relief from your pain.

      Do let us know how you get on.

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