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PMR and methotrexate is it going to help?

Posted , 3 users are following.

grannyD
grannyD

I have had PMR for just coming up 2 years and recently had another flare, CRP levels remain elevated. My Rheumy wants me to start on MX with my 10mg prednisone because as she says " you can't stay at 10mg for ever"

Is have been following the threads on here for PMR and have been trying to reduce by 1/2 mg each month but I hit the wall around 6 mg. my question to others out there in PMR land is do you think this is reasonable, given some seem to have PMR for longer than 2 years. I feel like I am being punished with this toxic drug because my PMR is behaving as it should. Also do people who are on it experience the nausea and diarrhoea, liver inflammation etc. does anyone know what the long term effects of this drug are? Help please as I am paying a lot of money for this rheumatoligists advice and I don't want to come across as an annoying know all. There is no evidence that I have anything other than PMR.

0 likes, 6 replies

6 Replies

  • mrsmop
    mrsmop grannyD

    Posted

    Hi grannyD I am taking MTX but I am taking it for Cicatricial Pemphigoid/Mucous Membrane Pemphigoid.  I have been taking steroids for approaching 3 years.  My Dermatologist wants me off them.  I read somewhere, that a good doctor will want you to stop taking Prednisolone as soon as possible.  I am down to 2mg, or at least, I was until I saw the Consultant on Tuesday.  I am now down to 1mg.  

    I will come back to this,  I have to go out.

  • mrsmop
    mrsmop grannyD

    Posted

    https://patient.info/medicine/methotrexate-maxtrex-metoject

    https://patient.info/medicine/prednisolone-deltacortril-deltastab-dilacort

    Have you read these leaflets?

    • grannyD
      grannyD mrsmop

      Posted

      Thank you for the info mrsmop seems like it maybe I should try the mx as I really want this PMR to end, just confused as I thought my high CRP rate meant that the PMR is still there as the prednisone doesn't cure PMR it just masks the pain and let's me lead a relatively normal life.
  • fussybag
    fussybag grannyD

    Posted

    My poor mum has been on pred for 4 years for PMR. She has been hampered with various probs and has been up and down like a yo-yo on the mgs. Her arms are covered in blood blisters which really get her down. Apparently her doc should have given her double bass gel as well to help. Must say that I think her doc is an idiot. Apart from wrong scrpts etc, It takes her ages to listen to mum about anything. So as a result, mum is 79, mum just goes with anything she does. Such a shame if people cant even talk to their doc!!!!!!!
    • grannyD
      grannyD fussybag

      Posted

      Sorry to hear that, what part of the world are you in? I have to say that I have been fortunate with my Dr here in NZ. I can't imagine how heartbreaking it would be to not be diagnosed correctly. Can she change her Dr? This disease can really get you down cos there's nothing to see, lots of people don't understand, that's why this forum is so great, I have learned so much from it.
  • EileenH
    EileenH grannyD

    Posted

    I suggest you ask this on the PMR forum - we're not a very adventurous lot and ask each other! In the meantime it has been realised that it doesn't do a great deal in PMR - or at least, when it does it is more likely to be that the patient has been misdiagnosed and really has late onset RA (LORA) which can appear identical to PMR in the earlier stages. I was told that the latest UK guidelines would remove the recommendation to use MTX as a "steroid sparer" because the evidence is it isn't reliable.

    If your wall is at 6mg - then being at about 7mg for a long time isn't that much of a problem. I've been on above 10mg for most of the last 5 years - no diabetes, no osteoporosis blah blah. The raised BP is controlled and the cholesterol is back to normal now I'm down to below 5mg. 

    Why can't you get below 6mg? Have you seen the scheme in a post on this thread?

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

    I, and several others, have used this scheme to reduce right down - because the percentage changes are very small. When you get to trying reducing around 5mg you are looking at 20% and more - any reduction over 10% is almost certainly going to be hard. 

    OTOH, I do know people who have been on MTX, it has worked and they haven;t been ill. If it works and doesn't give you "MTX flu" for half the week maybe it is an idea. But I also know people who were forced onto it, initially were able to reduce but then ended up having a flare and being forced back to a higher dose. It all depends...

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