leflunomide: Due to start on leflunomide this week,bit... - NRAS

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leflunomide

tone13 profile image
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Due to start on leflunomide this week,bit nervous as I was doing well on methtex8, pity me liver didnt like it. Is leflunomide any better, just worried about possible side effects ,like a rise in blood pressure or tendonitus which I thought I had seen the last of, suppose I will just have to accept theres no choice but to take my medicine and hope for the best........

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tone13
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Beth58 profile image
Beth58

Hi Tone, I've been on Leflunomide a few year now, when I first started the nausea and headaches were bad but nothing I couldn't live with as I hoped the benefit would be worth it I also have a 3 monthly Kenalog injection now (which is great).

One of my biggest problems was because I felt poorly for some time it affected my mental health (but I had other issues at the time so it could have been that too) but, I blamed the meds...

Also, my partner and I used to drink quite a lot of wine over a weekend and I was ill during the week, took me a while to realise it was the meds reacting with the alcohol, so be careful with alcohol. I don't drink at all now but when I know I will be i.e. Christmas, holidays and birthdays I stop the Leflunomide a week before and this seems to have worked.

Been on them 5 yr now and I'm fine, BP is high but it was high anyway and medicated so no real worries about the meds causing it.

Good luck hope they work great for you too.

Liz x

tone13 profile image
tone13 in reply toBeth58

cheers 4 the support Liz

tone13 profile image
tone13

cheers 4 support scouse

Hi I have been on leflunamide combined with Enbrel for a month no side effects as of yet , the only down side is no alcohol. Hope all goes well with you.

tone13 profile image
tone13 in reply to

I will drink two pints of Guinness today, and start the blooming tablets on wednesday, I will raise my glass to my fellow R/A Sufferers and leave a glass half Full, Cheers Kate.

Hi Tone

I have just finished my first week of lefl. and i have had no side effects at all, not even a headache just hope the blood results are ok. After such a short time, i actually do feel an improvement - my hands are definetly less swollen and i am walking almost normally. It seems to me too soon to have started to work but I wonder...

It is annoying about the no alcohol thing isn't it?

tone13 profile image
tone13 in reply to

Hope the Lefl does the trick 4 me 2,cheers 4 the reply Mads.

Judi profile image
Judi

Hi Tone, been on leflunamide for many years because my liver didnt like increase of mtx. although still taking mtx. at the moment it's at lower dose. Only problems I have had were (1) when I first started taking them I suffered a bit with wind (only lasted a couple of weeks) (2) my blood pressure did increase but this has been sorted with blood pressure tablets. Otherwise, RA symptoms did improve. Hope yours does too.

heatherp profile image
heatherp

Hi Tone - I was on leflunomide from March this year until a couple of weeks ago. I did really well on it - didn't really feel any side effects and ended up with no joint pain at all. I did get a slightly upset tummy after a few months, so had dose decreased, but it was still effective at lower dose.

I unfortunately had to come off recently as all the way through I had really low lymphocytes, so rheumy eventually decided it wasn't worth the risk of staying on it unfortunately! I am feeling the effect of being off it already though...!

And re the alcohol, I discussed this with rheumy and he said that small amounts are fine. I didn't ever have any issues if I had a glass of wine...and re blood pressure, mine averaged 90/50, so pretty low throughout!

Good luck - I thought it was really great stuff!

Hi Tone,

I'm on a Lefl and MTx combo and have had no adverse effects whatsoever from the Lefl - no adverse liver effects or headaches. I don't drink and haven't touched alcohol for years now because of other medical probs. There is a large warning label about not drinking alcohol!

Best wishes,

Cece.

joan_w profile image
joan_w

I have been on leflunomide for about 6 years and haven't had any side effects. I have wine with meals on my birthday and at Christmas and the very rare times I go out for a meal - my liver has coped so far although it always shows in my blood results if I have had wine close to the test.

Jo

Patreece profile image
Patreece

hope your ok with methotrexate just be careful it caused me lung damage n now I av copd also

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