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newly diagnosed pmr

Posted , 7 users are following.

michele96336
michele96336

hi i am 50 years old and was diagnosed and started treatment on predisolone 40mg redusing slowly i am down to 12mg and my symptoms have retuenes mildley is it just a case of upping and then reducing again to get the managable dose.

0 likes, 27 replies

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  • EileenH
    EileenH michele96336

    Posted

    Hi and welcome.You don't say how long and what you call slowly - tell us more and we can offer more suggestions. There are several reasons for a return of symptoms but without knowing more I can't really help.

    40mg is the usual starting dose for GCA and will cause a response in other inflammatory problems so normally PMR would be started on 15 to 20 mg with the 70% improvement in symptoms within a couple of days being typical of PMR. 

    Looking forward to hearing more!

    • michele96336
      michele96336 EileenH

      Posted

      hi started treatment 16th may 2014 40mg reducing by 5mg  the symptoms went it was such a great feeling to not hurt now down to 12mg and some stiffness in shoulders and lower back are back spoke to gp and put back to 13mg for 1 week and then reduce by 1mg a week and back to see gp in 1 month and waiting to see rhematologist.it all started last october just started siezing up could not turn over in bed pain in shoulders and lower back and hips could not raise my hand above my head worsre in the morning and eased during bthe day and then returned again in the late afternoon. 
    • EileenH
      EileenH michele96336

      Posted

      If you manage to get to 10mg without a flare then stick there until you see the rheumatologist - the group in Bristol keep patients at 10mg for a year before continuing the reduction. It reduces the flare rate to 1 in 5 compared with 3 in 5 for other rates of reduction. Many of us feel spreading the 1mg reductions over a few weeks helps avoid flares - and I suspect that continuing at 1mg every week may lead to problems.
    • michele96336
      michele96336 EileenH

      Posted

      Hi thankyou so much for the suggestion. i had never heard of pmr, and was putting the symptoms down to menapause as the symptoms are simular.then i found out my aunt has it she said the symptoms i had were exactly the same so i looked into it it's my mums sister, took doctors 6 months to tell her what it was . i also have an under active thyroid but boarder line only need to take 25mg of thyroxin. and vitiligo which are all linked to autoimmune disorders.so the dr thinks they could be the reason i have it .
  • tavidu
    tavidu michele96336

    Posted

    Hi Michele

    I to am new to PMR (7 weeks) and started off on 15mg of Pred, then up to 20 and now on 25mg. Depends how quickly you have reduced from 40 to 20, even at 5mg a week it should take you a month which seems very quick.

    if it were me I would up the dose by 5mg to see if the pain was more manageable and then reduce slower at say 2.5mg per 2 weeks. Good luck.

    • michele96336
      michele96336 tavidu

      Posted

      hi started on 40mg 16th may im a reducing by 5mg every week the when got to 15 mg reduce by 1mg a week now down to 12mg some stiffness returned in shoulders lower back so dr increased by1mg for a week to see if makes a difference and i am waiting to see a rheumatologist.
    • EileenH
      EileenH michele96336

      Posted

      That is far too fast a reduction in PMR after 15mg. You need a few weeks at each dose before the next reduction to make sure the inflammation is still under control and no reduction should ever be more than 10% of the current dose, which it still is for you, but many patients can't even manage that "overnight" so to speak.

      We feel a much slower reduction, spreading a 1mg reduction over a few weeks, is much less likely to result in steroid withdrawal pain which is so similar to PMR pain it is impossible to tell the difference.

    • michele96336
      michele96336 EileenH

      Posted

      hi Eileen i was great on 15mg no symptoms and also on 14 but started some slight symptoms on 13 mg so i may go backto 14 and stay on this dose for about3 weeks and then reduce by 1mg and do the reducing every 3 weeks its all a bit knew and just a little worried about being on a high dose for a long time . how long does it noemally take to get down to the managing dose that you stay on and what mg is this
    • mrs_k
      mrs_k michele96336

      Posted

      Can't send you a pm for some reason.

      You need a reduction plan which we have and it works for most people.

      If you google  'pmr gca northeast' and find the website then you will see how to make contact.

    • mrs_k
      mrs_k michele96336

      Posted

      Hope it works for you Michele,  Do let us know how you get on.

      Send it to the email address.   Thank you.

  • mrs_k
    mrs_k michele96336

    Posted

    Could you take the time to fill out your profile please,  you can do this by clicking on your name in your post.

    If you can put in, when diagnosed, what amount started on, what rate you are on now.  This helps when answering questions.

    As EileenH says, welcome but we need to know a bit more.

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