LEFLUNOMIDE

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mightymam
mightymam Member Posts: 38
edited 3. Jan 2011, 11:17 in Living with Arthritis archive
I have tried mtx and it didn't work to good for me and I had lots of bad side effects, Due to start Leflunomide on Monday. Just wondering if any 1 on it and how they have been.

I really want this to work I am in so much pain in my hands and the fitigue is just wiping me out to the point I can't cope with kids cos I can't be bothered with myself. I am so tired that I feel sick and don't want to eat. Feel like husband doesn't understand that I can't do everything I used to do at the moment.

Sorry for the moan, however I feel this is the only place people understand.

Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hello Mightmam.

    I am so very sorry that you are struggling so much at the moment and that you have had to stop the mtx.

    Please don't feel alone with this - you are in good company on here so please don't ever feel you have to apologise.

    I am sure there will be someone along before too long who can share their experience of Leflunomide. I really, really hope it helps you. Given that all these things take time to work, would you consider asking your GP if there is anything you can have in the meantime to tide you over - perhaps a steroid injection? It might just help you to manage until the Leflunomide gets into your system.

    Will be thinking of you with the Leflunomide on Monday. Please do post if you can to let us know how you get on.

    Lots love

    Tilly xxx
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
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    HI mightymam & welcome to the forum (as I don't remember seeing you post before - apologies if I have missed you before)

    I took Leflunomide for 2 years until recently. For me it was in conjunction with MTX, as the one alone was not enough.

    I had a friend who already took Leflunomide, and for her the drug has been a miracle, enabling her to do loads more than she has been able to for years.

    FOr me, after the initial tummy troubles (which usually wear off after a couple of weeks) I had no problems for ages with the Lef, and it did indeed work on my arthritis :grin: Getting the right dose combo with the MTX was what caused most of my difficulties, but for 2 years it worked well for me.

    Sadly, I developed a rash which has been put down as a mild drug reaction to the Leflunomide, so I have had to stop it and am now about to start Anti-tnf treatment.

    Please don't let that put you off though, as with all these meds they affect everyone in different ways, and this just might be the one for you!

    best of luck!

    wonky
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
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    Hi there mightymam

    I have been on leflunomide for years but also with methotrexate.
    I cannot recall any unpleasant side effects taking this med.
    I did once have to come off mtx because of my liver but went back on after a rest period.
    I also take celecoxib and hydrochloroquine.
    I hope the leflunomide alone works for you
    Good luck.
    Juliepf x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I took lef for a little while, back in 2004 I think. I was crippled by searing headaches but no nausea or tiredness. It did nothing for the PA so I came off it. We are all so different in how we react to these drugs - I hope it is far more beneficial for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
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    I was on leflunomide for about 6 months. It was the first thing that even made a dent in my RA. Unfortunately it also tore my gut up so I had to stop taking it. I took it in conjunction with hydroxychloroquine and prednisolone as it wasn't strong enough for my RA on its own.
  • mightymam
    mightymam Member Posts: 38
    edited 30. Nov -1, 00:00
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    Thankyou everyone for replying. It is nice to hear from people who go through the same as yourself.

    Tillytop I was given a steroid injection about seven weeks ago which was supposed to ease things while I waited for leflunomide to work. There was a problem with getting my perscription sorted for leflunomide (my RA nurses took a while to sort it out) and I am now going to pick my perscription up myself., this Monday. So now my steroid injection has started stop working so they said it is to soon to give me another.

    I have decided to wait untill after christmas now to start the leflunomide I don't want to be poorly off any side effect that might happen while kids are off. Been poorly over xmas and looking after 3 boys NOT a good idea.. x:)
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hello Mightymam

    I am sorry that your steroid injection has now worn off and you can't have another one yet. But I do understand completely why you plan to put off the Leflunomide until after Christmas. I think I would be inclined to do the same if it were me.

    I do hope that you are able to enjoy Christmas though - I don't know how old your boys are but I bet they are excited and looking forward to it aren't they?

    Thinking of you.

    Love Tilly xxx
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
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    Hi and sorry for you plight, All of the anti TNFs except in few cases require you to take MTX or some other drug. You should talk to your Rheumy or GP
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
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    Hi i am on this. I had a few tummy problems to start with. They went, I lost weight as i felt no hunger i cut down my food intake at the same time and lost weight it helped me. I had that fact checked with doc and other factors were looked at and she put weight lose due to meds and was pleased with me. It just took the appetite away i cut down amount of food and took exercise.
    I also have had a few blood pressure probs so dose was cut down and it still changes from time to time. They keep eye on it. It suits me at moment and found it a godsend. My Arther is well controlled now. We are all different hope this one works for you good luck with it from Joanne :))
    Joanne
  • lizzie7ne
    lizzie7ne Member Posts: 154
    edited 30. Nov -1, 00:00
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    Hi, I took Leflunomide in combination with methotrexate but had to stop Leflunomide recently due to it affecting my liver. I previously tried hydroxychloroquine, sulphalazine and methotrexate to no affect but the combo of mtx and leflunomide did improve things. Currently having two weekly blood tests for liver function so just waiting to see what happens next?

    Good luck

    lizzie
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi mightymam,

    I am sorry i am late seeing this one. Its very difficult to get people to understand what is going wrong for you at times. I know the fatigue and you right its very hard to keep going.

    I don't know if its possible to have a short kip at some point during the day? Its meant to help. Oh when the fatigue is at its height I fall asleep in the arm chair for a short time and that helps for the next hour or so.

    I can't help with the Leflunomide cus I haven't been on it.... might be tomorrow so its good to see it an work.

    I hope it does work for you and let us know how you get on please. Cris x
  • cathhankin
    cathhankin Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi there,
    I started taking Leflunomide to replace methotrexate as i became allergic to it and i'll tell you something i notice a HUGE difference to when i was on mtx. I take it alongside Enbrel (etanercept) and it is the best thing i have ever done honestly. Personally i have no side effects. I still have my fatigue but my joints are the best ever.
    I hope it works as well for you as it has for me x x x
  • mightymam
    mightymam Member Posts: 38
    edited 30. Nov -1, 00:00
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    It is really good to hear that some of you have had really good effects from leflunomide, Fingers crossed for me. Got the flu and a bad chest infection so need to sort this out, hoping to start leflunomide by next monday. Will keep you informed.

    And a bit weight loss due to it would be even better. ha ha.