LEFLUNOMIDE experiences please :-)

Coburn09
Coburn09 Member Posts: 9
edited 27. Feb 2014, 09:01 in Young people's community
I've just been put on this medication and wanting to know other peoples experiences. I was diagnosed with JIA when I was younger but with no longer being a juvenile I have never known what type of arthritis I have. I should really ask my consultant this!! Any way I would love to hear peoples experience of this medication please :-)

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It gave me blinding headaches so I was taken off it. I've also done meth, sulphasalazine, cyclosporine, infliximab, Enbrel and humira. Never had what I would call a 'result' on any of them but no matter. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Coburn09
    Coburn09 Member Posts: 9
    edited 30. Nov -1, 00:00
    Ah I get headaches a lot any way :-( the only 1 of those I know is meth. I've tried it and didn't like it so this was another option xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Sulphasalazine, meth and lef are the standard entry-level meds, they are DMARDs (disease-modifying anti-rheumatic drugs) and can be prescribed alongside hydroxycholoroquine, naproxen, celebrex etc which are NSAIDs (non-steroidal anti-inflammatory drugs). The infliximab, Enbrel and humira are anti TNF meds. None of these are pleasant drugs but if you find the one that suits you then the results can be wonderful. I began my treatment far too late for any miracle to happen (I am an aged hag of nearly 55, I started aged 37 but was un-diagnosed for years) and it is very much a case of trial and error. There are children of two on here who have meth via injection - this is a cruel disease. :(

    I have psoriatic arthritis which in turn has led to osteo and now fibromyalgia. I know of one lady who is on both meth and lef and they do not give her any major side-effects. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello again. Good to see you'll be on something to help your arthritis.

    I was on leflunomide briefly. It did work for me but, during a very bad chest infection, my usually mild asthma got to shall-weshan't-we-send-you-to-hospital levels. My GP blamed the lef but I'm not sure with the great benefit of hindsight.

    I now take a combination of methotrexate and hydroxychloroquine and it's worked well for me for years.

    By the way, most unusually, DD has made a minor mistake - hydroxychloroquine is a DMARD not an NSAID.

    Good luck with the new regime. I hope it works well for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Coburn09
    Coburn09 Member Posts: 9
    edited 30. Nov -1, 00:00
    Ah that's a shame about having the chest infection and they put it down to the lef. I'm hoping this medication will work though now is a good time to try as my joints are hurting more today than they have done in quite some time. Did lef take weeks/months to help? I have tried reading up a little bit but I try to stay clear of the internet too as you usually read the bad stuff then worry.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The usual timescale for the meds is between 2 - 12 weeks so don't get too impatient if very little appears to change. It's also true that one man's miracle med is another's blast from hell. :)

    You need to ensure that you stay as germ-free as possible: hand gel, anti-bacterial wipes and frequent hand washing is vital. Meth etc. work by suppressing the immune system, this means we can catch bugs but, because we don't immediately present symptoms, bugs can get a real hold before we know it. My hospital has always told me to stop my meth and humira if I am ill so that my immune system can fire up and do its thing. The nett result is I get better quicker whereas those on here who, because they have been told differently, don't stop them rumble on for weeks.

    You are right to stay away from the interweb but reliable sites such as here are factual without hype or un-necessary drama. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Coburn09
    Coburn09 Member Posts: 9
    edited 30. Nov -1, 00:00
    Oh that's not too bad 2-12weeks. Not quite sure what to expect I am hoping it will at least ease things. As for infections etc I'm hoping I will be fine but shall buy some hand gels etc anyway thank you :-) I was generally ok with infections etc when I was on meth years ago though I didn't have young children then who will no doubt bring them home with them lol
  • BluesWalk
    BluesWalk Member Posts: 48
    edited 30. Nov -1, 00:00
    Hey mate, ive been on it for likes year n a half with no problems at all. I recommend taking it before bed. Watch out for side effects if u get any at all :)
  • Coburn09
    Coburn09 Member Posts: 9
    edited 30. Nov -1, 00:00
    I shall try taking it at night :) I've got a few side effects already and been on it a week. I keep having a upset tummy, nausea and major headaches. I'm going to speak with my pharmacist this afternoon for abit of advice.

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