Leflunomide

I am fairly new to this site. Having RA for thirty years I am about to start Leflunomide, I have taken, Methotrexate and Sulfasalazine in the past, I also take medication for an under active thyroid and high blood pressure. Looking at the side effects has put the fear of god in me!! Can anyone tell me there experiences good and bad!!? Apart from the side effects I am not allowed to drink alcohol! I don't drink a huge amount but am partial to the odd glass and with Christmas round the corner my bucks fizz Christmas morning looks like a thing of the past! Never mind :-)

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  • Hi there - I was on leflunomide for most of this year, although came off due to very low lymphocytes (although they are low anyway, so didn't take much to make them too low). I have to say that my RA has been controlled really well with hardly any joint pain, so really sad to come off because of that!

    I did however have quite an unsettled tummy throughout, but that helped with losing over a stone in weight over a few months - I'm now at the lowest weight I've been my entire adult life, so can't complain from that point of view! My blood pressure didn't increase at all which I know is another of the long list of side effects (although as with my lymphocytes as a general rule I have very low blood pressure)...

    Re the alcohol - I've just posted a bit about this on another post about MTX. Both my GP and rheummy said that in moderation it is fine. Your liver function tests will tell you if there are any problems, and mine were all fine (but everyone is different, so best to discuss with your team)....

    Good luck - like I say I had a great experience on leflunomide so hope it works out for you!

  • I'm on Leflunomide and Mtx and have had no side effects from the Leflunomide whatsoever. I don't drink at all, but that's my choice:-)

    Hope that helps,

    Cece x

  • Hi,

    I am on Leflunomide and Mtx and have had awful side effects, at first I was on 1 every day but it made me really sick all the time also had bad headaches and developed an ukcer on my tongue so my rhuemy nurse put me on 1 every other day, the problem now is the swelling and stiffness has crept back and is not holding the RA, I am back at the hospital on the 9th Dec so will see what happens then. After saying that I have a friend who is on Leflumonide and she feels almost back to normal with no side effects, every one is different so I hope it works for you. Good luck and keep us posted. xx

  • Hi,

    I've been on leflunamide for over 5 years (may be longer as I can only guess at the year). I've had RA for about 20 years.

    It did raise my blood pressure so now take a tablet to lower it. I was border line before and the leflunamide just kicked it in to what they consider to be high.

    The only other side effect I have had was a very windy stomach and had to go to the loo more! This did not last, eventually everything sorted itself out. From what I can remember I also lost some weight.

    With regard to drinking, being on methatrexate I had already cut down my consumption to now and again and a maximum of 3 when we went anywhere special (meal out, weddings etc.), with leflunamide I cut it down to to maximum of 2 and made sure that I drank loads of soft drinks and/or water in between the 2. I also changed my drink from white wine/vodka and tonic to cider (lower alcohol level) if I was somewhere where it was going to be a long evening. Only once have I have a problem on this regime and that was picked up after a blood test late January years ago and was a high liver result. (Obviously had over done the vino over Christmas and New Year ) my leflunamide was then reduced to a lower amount and once my liver returned to normal the leflunamide was increased back to my usual amount. I think my problem was caused by eating 2 boxes of liquers, not something I would normally have even considered in the past, oh ... and brandy butter with my christmas pud!

    I still have the occasional glass of wine if I feel like one - but I have found it easier not to want a drink knowing it is my choice - on a weeks holiday last year I had 3 glasses of wine over a week and it didn't seem to cause me any problems.

    I have not had a drink now between last Christmas and now. Just haven't felt like one.

    Why not have a word with your rheumy team, they will understand your dilema I'm sure.

    Meantime, hope leflunamide works for you.

    Judi

  • Thank you so much everyone, it's so nice to hear from people with similar problems, well I start Monday and I am sure it will all be fine, I may allow myself one glass of mulled wine at the schools Christmas Carol service! If I don't post before hand I hope everyone has a wonderful Christmas and New Year X

  • I have been on Leflunomide for many years. Methotrexate failed me after about 18 months so Leflunomide was added. I have had no side effects at all and it was successful for about 6 years before both medications failed and I am now on anti-TNF as well.

    I also have an underactive thyroid and neither medication affected the medication I take for this or my blood results for this.

  • Hi There,

    I have been on Leflunomide for years as well. I also get an upset stomach, I just make sure I eat something with it. I have actually had my thyroid taken out & am on thyriod meds for life now. And I drink wine. I am also on Cimzia, and I haven'y had any problems. I think in moderation the drinking is fine. :)

    I hope it works for you!

  • I took Metho for years and was disappointed when I needed to go off. I have been on Leflunomide ever since (with Orencia). I don't have problems from it. I only take half a pill. It works out well for me to only take half of the recommended dose. That may be a good way to start out.

    Regarding drinking, it happens. It happens here once a week with a glass of wine. I haven't had any problems with that either. Moderation.

    Hope this helps, BSO

  • HI i have been on lef for 6 weeks no side effects to date. I like a glass of red wine at the weekend so that has been one treat that i have had to forgo. My rheumy had said i could have a glass with metx but not with lefl. so i reckoned the lef must be more harmful to the liver ....?

  • And your' blood pressure.

  • Hi Ockle, I have been on Leflunomide for years , and my Rheumie told me an occassional glass of wine was not going to do anything to me. It didn't.

    I'd suggest ask your Rheumie if you could possibly celebrate Christmas morning as usual. We've given up so much, and put up with so much pain, etc, seems like we should get a reprieve once in awhile.

    ' Actually, recently, at my son's wedding, I had three glasses of wine through the course of the afternoon and evening, and 3 little shots of Bailey's Irish Creme. I didn't feel too bad! And, I'm still here, and I told my Rheumie I was likely to have champagne and he said "You just go have a great time" So I did :) Hope you can too. Loret

  • Hi, I'm new to this site, having only been diagnosed with RA last May. Having spent this evening reading all these comments from such lovely people, I must say what a great comfort it's been to me, to realise I'm not alone in this dreadful nightmare!! Previously known for being extremely healthy and fit, I cannot come to terms with having RA (keep thinking I'll wake up tomorrow and it's all been a bad dream!) I'm on Sulphasalazine, Prednisolone and, until last week, Methotrexate. The side effects are vile, especially the methotrexate, which had me gasping for breath and very nauseaus and shaky! Starting Leflunomide next week and extremely anxious about what to expect.

    I've shed so many tears this year - at work, at the GP's, Rheum clinic, home - and so fed up of feeling sorry for myself. Just feel that my life, as I knew it, is over!

    The worst thing for me is others' lack of understanding, especially at work, People (and I was probably the same before all this) just think it's a bit of arthritis and that I'm wingeing about nothing or just stressing about work!

    Does it get any easier with time?

  • It does get easier with time. The hardest thing is coming to terms with it, not easy, but I don't know about anyone else but I feel that the only attitude to have is positive and don't let this nasty disease get the better of you. The drugs and treatment are so much more advanced now from when I was first diagnosed thirty odd years ago. Unfortunately theres not a lot of understanding of the disease, but maybe we can all change that!! Keep strong x

  • Thanks Ockle, will try! How have you been getting on with your switch to Leflunomide this week? x

  • Hi Trish,

    I have been on Leflunomide for about a year and can tell you that the effects have been fantastic. I was prescribed it after my hands had become unbearably stiff and my consultant had to give me 5 jabs of cortezone in each hand to get me going again, but since then everything has been fine. I already take thyroxine and have to take a blood pressure tablet daily, but no other side effects. Admittedly I only have a medium RA, but also have psoriatic arthritis.

    Stay positive and keep on taking the tablets!

  • I'm just starting leflunomide and trying to look through comments and relate to yours Trish53. I feel the same - like I'm over-reacting being so upset about this because it's "only arthritis". I'm 45, and didn't think I would have to think about this stuff for a long time. I love to have wine with dinner - and just feel like my whole way of life is changing. I'm frustrated and upset. :-(

  • I was diagnosed May 2015. Started Methotrexate June. Have lost 2 St 10 lb. have no taste for food. I am 66 and so glad I am retired. I understand how difficult it is to carry on with a working life after a R A diagnosis. Starting Leflunomide at the end of this week and scared. I also have Irritable bowel so panicking about new drug

  • Trish, so far so good but only three days now x

  • Hi,

    I started Lef 4 days ago. I now have tummy pain. Is this normal. Thanks

  • Only been on leflunomide for couple months but not happy .. seem worse not better ... not happy w/ Rheumatoid dr either (got new one but not til February )

    From articles I read ... alcohol limited to 2 oz a week ir not at all ...

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