Leflunomide

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ELAINE55555
ELAINE55555 Member Posts: 123
edited 17. Sep 2013, 10:56 in Living with Arthritis archive
Hi All
I have RA. The only joints affected were my wrists, up until 2 months ago, then my feet joined in. I am waiting on an MRI appointment, to determine whether its synovalitis?, which i presume means RA. I had a letter from the rheummy this morning which says that on my next appointment, she will be adding leflunomide to my mtx and hydro. Is anyone else on this combi? What is your experience of it? It is an immune suppresing drug, as is mtx. What is the downside of taking 2 immune suppresing drugs? Ive been ok on mtx and hydro, and don want to rock the boat, but then again if the ra is now in my feet, can I afford not to take another drug if it is offered?

Thanks for listening

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hi, I took lef for a while but sadly it all it gave me were blinding headaches. I know one lady who used to post, she too is on meth and lef and gets on well with both so I hope that proves to be the case for you.

    I am on a triple therapy (so fairly immuno-suppressed) but I usually manage to avoid bugs and things. Hand washing is a must, plus I carry sanitising gel and occasionally disinfectant wipes. I think you should try it because it may give the extra ooomph you need to better control the RA. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    As far as I know, which isn't very far :wink: synovitis is just something that happens with R.A. so maybe they want to see if yours has progressed.

    As for the triple therapy - I think it's quite common. I take meth and hydroxy (Hydroxy is also an immuno-suppresant though not as strong as the others) I did have lef, briefly, before meth but didn't get on with it. Others do well on it. My view would always be to take what's need though I agree it's always an anxious time starting these new, powerful, meds.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • mike26
    mike26 Member Posts: 416
    edited 30. Nov -1, 00:00
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    hi ELAINE55555
    ive been on leflunomide for5 months now and methotrexate (inject)
    combi and have got on ok with it up to now.
    last week my inflam markers not so good so waiting to see what new markers say (better or worse) we shall see.
    but i think ill be going on TNFs.
    hope it works for you good luck
    mike26 :|
  • mazbaz
    mazbaz Member Posts: 38
    edited 30. Nov -1, 00:00
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    Hi there,

    Ive recently been started on Leflunomide after getting a 2nd opinion and 2nd Rheumy changed diag from RA to PSA. Took me off Meth and Hydroxy completely and said the Lef should be more effective for me as hands, wrists and knees were all swollen sore and hot.
    Its only 3/4 weeks on new meds and Im feeling slightly improved I think, my swellings are reduced and I'm generally a bit better.
    Only side effects so far have been mild dodgy tummy, slight dizzyness which wears off very quickly and a huge mouth ulcer!

    I hope it works for you x
  • ELAINE55555
    ELAINE55555 Member Posts: 123
    edited 30. Nov -1, 00:00
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    Thanks for all your replies. Will keep you informed. Hope you are all well!
  • ELAINE55555
    ELAINE55555 Member Posts: 123
    edited 30. Nov -1, 00:00
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    Just took a thought Mazbaz, maybe I am being taken off the hydro and metx. Why would I be taking 3 drugs when one would suffice?
  • mazbaz
    mazbaz Member Posts: 38
    edited 30. Nov -1, 00:00
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    Hi Elaine,

    Well you have to go with what your Rheumy advises. It is possible they will want you on all 3 meds, they call it triple therapy.
    Wih me , because I saw a different Rheumy, He obviously thinks that me being on the meth and hydroxy was not working for me. I had been on those 2 meds for a year and a half or so so they had had plenty of time to work for me if they were going to.
  • ruby2
    ruby2 Member Posts: 423
    edited 30. Nov -1, 00:00
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    Hi I am in the proccess of being put on Leflunomide and thus having blood pressure checks as apparently it may raise it (only may).
    As my pressure is always on the high side I'm a little reluctant too.
    My problems are in my hands/wrists , I have recently added my knee to the list too.
    Mtx made me poorly, sulfa isnt doing the trick and hydro affected my eyes. So like you I am going to have to give it a go.
    Hope it all goes well...will let you know how I get on too.

    https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CDIQFjAB&url=http://www.arthritisresearchuk.org/~/media/Files/Arthritis-information/Drugs/2261-Leflunomide.ashx&ei=jSM0Usv7GaqN7QacgoHYAw&usg=AFQjCNGoqLCjHj1h188QRlMr3x_nGtMgJA&bvm=bv.52164340,d.d2k
    Ruby
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    I've been on MTX and leflunomide (also added an anti-TNF recently) for a year now. I had no side effects when we added leflunomide, except that I am definitely more prone to picking up stomach bugs and chest infections. It initially really helped my RA but seemed to stop working and I deteriorated.

    Some rheumatologists give you a loading dose of lef. which can increase the incidence of side effects but mine just starting me on a normal dose, so I had a smooth transition. I'm glad we did it that way.

    I don't want to be presumptuous but I assume they have told you the risks if you are of child bearing age as it's a drug that needs to be washed out of your system if you plan to conceive.

    Good luck with it!
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