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My internest is suggesting I go on methotrexate as I am having so many side effects from withdrawing

Posted , 10 users are following.

eddylynn36538
eddylynn36538

I have been doing the very slow method of reducing. Had pmr going on 11 years controlled on 10mg of pred. Last August had a flare and put on 20mg. I'm at 10 for 4 days and 12.5 for three. Next week will be 10 for 5 days etc. Had a short spell where it had to go back up a couple of months ago. Saw internest today for other problems and he thinks I should try methotrexate. I have read many reports on this great site. Some taking it with no trouble and others with severe side effects. I see my rheumy on Friday and I would like to go in having all the info I can on this drug. Suggestions please.

1 like, 7 replies

7 Replies

  • Anhaga
    Anhaga eddylynn36538

    Posted

    I think there is a methotrexate forums group.  You can find it, and other references, by typing methotrexate into the little search bar to the right of this conversation.
  • Susanne_M_UK
    Susanne_M_UK eddylynn36538

    Posted

    Yes, there is a methotrexate group, but most of the members in the group suffer from other conditions and not specifically PMR. Several people here, me included, take MTX.

    I too have a problem tapering pred. I have GCA, so have been on very high doses of pred. I've been on MTX since early January. Started on 15mg/week with no apparent side effects. Rheumy reduced the dose to 12.5mg last week, as she thought it might be the cause of my severe tiredness, but I think the cause was in fact a long term underlying flare due to me tapering below my "comfort zone". I'm now back on 40mg pred and my complete lack of energy has gone.

    So, as you know, some people tolerate MTX quite well and some don't. You will have to weigh up the pro's and cons yourself, no-one knows how you will react. And the long term side effects are also something you will need to consider.

    I did have slight nausea and headache for the first week or so, but it passed.

    You will need to have a chest xray before you start and regular bloodtests.

  • Daniel1143
    Daniel1143 eddylynn36538

    Posted

    There was a forum month or two ago about PMR and methotrexate. Quite a lot of commentary.

    Some rheumatologist believe methotrexate can help, but this seems very little hard evidence to this end. I was one of those who try methotrexate because I wanted to get off Prednisones as soon as possible due to the side effect of muscular myopathy which I've been experiencing. I stayed on methotrexate for about three months. It did nothing to expedite my tapering on prednisone. Let me add that while we may not like the side effects of prednisone, the side effects of methotrexate are known to be equally as bad and potential he much worse. When I really delved into a side effects of methotrexate, I stopped taking it immediately.

    You have to remember that none of these things are a cure. And mixing two very complex drugs same time can prove to be very problematic

    • eddylynn36538
      eddylynn36538 Daniel1143

      Posted

      Thanks for your input. I'll talk to my rheumy about it but think I've decided to pass. I also have to confess to her I've quit prolia.
    • FlipDover_Aust
      FlipDover_Aust eddylynn36538

      Posted

      I started on MXT back in December and have been able to drop from 20mg a day to 6mg a day. I have no side effects to report. My quality of life has improved to the extent I'm back at work full time and I'm able to do things again (although my fitness is seriously compromised from being 'sick' for so long). Personally I recommend it.

      I have an argument with my GP every six months about Prolia. I started a post about it here a while back. i had a DEXA scan and it indicated that I have better than average bone density and I see no reason to have it. We continue to disagree!

       

    • FlipDover_Aust
      FlipDover_Aust eddylynn36538

      Posted

      Yes, i was on 20mg of pred when I started on MXT back in Dec last year. i was unable to reduce and was feeling really awful. my Rhuemy thought I might have 'prednison resistance' - the pred just wasn't working as it should and was in fact, making me feel worse because of the high dose.

      As a result of being on MXT I've managed to reduce my pred to 6mg daily, as of last week, and so far holding without pain and stiffness.

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