Has anyone been taken off methatrexate because they were doing well on an anti-tnf?

Hello, after 9 weeks on enbrel and 15mg of MXT, I am doing very well, my consultant mentioned as I was leaving that in 3 months he will review and start to lower dose if things keep improving, this is great news as you'll all understand the horrors of this meds. I just wondered if it was possible that I may come off it alltogether eventually, anyone else?

Many thanks :)

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  • Hi Wiliby, when I've done well on drugs like Anti-tnf I have requested my MTX be lowered, my consultant is never keen to do this but I usually get my way.

    I don't think he would ever allow me to come off it all together though, which is understandable as they work well together.

    The thing is we sometimes feel we are doing so well that we get tempted to come off certain drugs or lower the doses, sometimes we continue to do well other times we don't.

    If your on a good regime of drugs that work well for you then I would try and stick with that for a while longer. Nine weeks isn't really that long but I'm glad you feel so well you would like to lower the dose.

    Remember how you used to feel before your RA was under control?? do you really want to go back to that so soon? I always have to remind myself how I suffered so much before.

    Take care

    mand x

  • I completely forgot that I missed a dose of MXT when I had a cold and was sure I felt worse,maybe it's not so bad after all!!

    It's my hair thats thats bothering me or lack of it, think I'll be investing in a hair piece soon :)

    Thanks Mand x

  • Hi,

    Nope. I have recently had the plaquinil reduced, not 20mg mtx though. It was explained to me in laymans terms as the immune system very clever & the other damards act as sort of decoys confusion as such (er I think) to anti tnf.

    I have read studies that say the outcome of slowing the progression of RA, is greatly improved by combination of anti tnf and mtx, rather than anti tnf alone.

    Don't be in hurry to come off drugs if you are doing well, try just follow docs orders and wait, bloods would have to be normal quite a while before Rheums will consider changing meds, I think anyway.

    Gina.

  • Hi Gina, yes read that somewhere also, gosh thats amazing about the dmards being decoy confusion :)

    Your still on quite a high dose of mtx but I suppose from what I've read your RA was very aggresive...

    Thanks x

  • Hi Wiliby,

    Just further to that, I did reduce methotrex from 20 to 15mg on docs advise, but I did get achy. I did build up to 20mgs.

    I don't know if I have missed something about mtx, but your bloods are checked monthly for liver and everything, so would that not safe guard against extreme side effects?/

    I think anti tnfs much scarier!

  • I am doing well on Cimzia and I also take methotrexate and leflunomide. My consultant wanted me to start reducing leflunomide but I believe it is doing far more good than MTX so he is letting me reduce my MTX. Have reduced it by half up to now, but I think that is as far as he will let me go as he is now talking about reducing leflunomide again.

    He did say that it could be possible for me to stop both the MTX and leflunomide. We shall see, but any reduction is a bonus.

    Jo

  • Thanks Jo, I'm realising I may not get of it altogether but just thankful of feeling better for the time being.

    Would be interesting to hear if you ever do manage to come of both and still feel your doing well, keep us posted :)

  • I always think slowly does it with any meds changes x

  • yep, your right, I think I got a little over excited :) (I need to get out more hehe)

    thanks alison x

  • Hi

    I have been on enbrel for about 3 years and refused to take the methotrexate with it as it had made me feel so ill and had effected my blood before the enbrel so i could not see the point of going back on it. They tell you that it has a synergistic effect. I have just had a review and my consultant is talking about giving me a complete medication break as i am so well! Scary but great news! He wants my menopause symptoms to settle down and then im going for it in a few months time. So how good is that! Anyway i believe that everyone is different and what works for one may not work for someone else but getting off any long term medication has got to be good. Try going vegan for a while too - its had a really positive effect on me and anything is better than going back to that debilitating pain. I thought i was going to end up in a wheel chair unable to even feed and wash myself. Good luck the journey is very personal.

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