Reducing meds whilst in remission?

CatherineGB
CatherineGB Member Posts: 16
edited 11. Oct 2013, 06:12 in Living with Arthritis archive
Hi there,

I'm really fortunate to have been told that my RA has gone into remission (apparently my consultant noted this in January but didn't tell me, I found out from the nurse last week). I've never been told this before and have had RA for 6 years now. I'm seeing my consultant in a few weeks and am wondering whether to ask about reducing my meds at all. Has this happened to anyone out there? I'm on 20mg of methotrexate plus I take hydroxychloroquine daily.

Thanks,

Catherine.

Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I would definitely ask but I would just as definitely go with what the rheumatologist suggested.

    I'm a great believer in reducing meds whenever possible as that leaves more options open for when things get bad. However, my idea of an opportunity mightn't be my rheumatologist's and they are the experts.

    I did exactly that on my last visit. I said I'd been feeling quite good for some time so could I reduce the meth. He said my something-or-other levels were actually quite high so he didn't want me going beserk. We agreed on a 2.5 reduction. It's working but only just. I don't think I'm quite as good as previously so I'm sticking for now. (I'm on meth and hydroxy too.)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi Catherine , no harm in asking & see what they think but dont come off them totaly because your RA will show itself
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I wonder if there is a difference between remission and controlled, and if so what it might be? I am very pleased that things are better for you but I think you need some expert advice on this, not the thoughts of the forum because the usual posters are rarely in a similar position. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    I would have a long chat with your doctor about it, from experience lowering my medication has almost always ended up in a flare up which often lasts for months.

    As Dreamdaisy said, I would think remission is being used rather than controlled? In my eyes if arthritis was to go into remission then you would not need any form of medication. Or by the sounds of things you have found the right mix of your current medication and your doctor feels that it's being controlled very well.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Catherine,

    First off, great news! :)

    My understanding from my consultant is that rheumatologists tend to use the word 'remission' to mean 'control of symptoms via medication', so perhaps your consultant felt that there was no need for any change in your treatment plan :?:

    This hasn't happened to me, but in your position I'd be up for a discussion about reducing my meds, just to be aware of all my options at this stage.

    Hope it goes well,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    Hello I know my rheum says he weans people off/reduces meds he told me that at my first app I am way off that though (if it ever happens me me that is). I'd say go with what your doctor say and don't try and reduce them too soon I can imagine it would be awful to do so well then come off and go back to square one that is just my opinion :)p.s that is great that you are in remission though congrats :D
    How am I gonna be an optimist about this?
  • CatherineGB
    CatherineGB Member Posts: 16
    edited 30. Nov -1, 00:00
    Hi,

    Thanks for all your replies, they've been really helpful. I'd never been told I was in remission before so didn't know what it meant. I'll ask my consultant what he means by it when I see him. If it means that my condition is being controlled by the meds then it's probably best to stay on the dose I'm on. I have no issue with being on the meds, I think I just wondered if anyone had ever been in the fortunate position of having their meds reduced. I appreciate people's caution in coming off/reducing meds. It's so lovely to be well for the first time ever with my RA that I don't want to end that.

    Thanks again for your interest and advice.

    Catherine.
  • Buka
    Buka Member Posts: 43
    edited 30. Nov -1, 00:00
    I made the mistake of reducing my meds once. I had felt so well that it seemed like a good idea at the time. My consultant was not impressed. He told me that the reason I had felt so well was because the medication had been controlling the RA and that by taking the decision to reduce without talking it through I had set the progress I had made back. He made me feel really stupid and I have never done it since. I suppose we all like to think we can still maintain some control of this disease but ultimately we have to seek advice rather than take matters into our own hands. Not sure I like it but I have accepted it now. Buka.
  • williamlargs
    williamlargs Member Posts: 143
    edited 30. Nov -1, 00:00
    Hi

    Not posted for a while so hi to everyone.

    I was diagnosed with RA in 2003 and twice have been declared in remission (I know lucky b......) the most recent being in January past. I am drug free at this time after 2 and half years on MTX up to 15mg.

    Therefore in rare cases remission does excist and hopefully this time it will remain for a long time.

    I sometimes wonder if I was a fraud but thinking back to the pain, positive rheumatoid factor, stiffness and sleepless nights that ain't the case.

    I wish you good luck

    Kind Regards to all
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
    That is awesome William lucky you :D
    How am I gonna be an optimist about this?