leflunomide : Hi guys, hope you are all doing well! I’m... - NRAS

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leflunomide

forislava profile image
7 Replies

Hi guys, hope you are all doing well! I’m on leflunomide from yesterday and I’m dreading the side effects… so far only headache and very strong urge to throw up but managing it, and a few others not not worth mentioning, any advice, what should I expect? And more importantly, when it started working for you in terms of pain?

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forislava profile image
forislava
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Mmrr profile image
Mmrr

Having not tolerated all the usual meds, hydroxychloroquine, sulphasalazine, methotrexate and several biologics my rheumatologist suggested a half dose of leflunomide to see how I got on.I've had no side effects, she then added in JAK inhibitor, toficitinib, and hey presto, no major issues ...my BP has gone up, not sure if it is leflunomide or prednisolone driven, I now take an antihypertensive.

skinnycappuccino profile image
skinnycappuccino

Heya, I've been on leflunomide since 2013 or so and I've never experienced any side effects! My rheumy suggested at the time that I take it before going to bed so that I's sleep through any side effects anyway. When are you taking your dose? Maybe you could ask your rheumy if taking it at night might help? For me, taking it before bed helped also on a psychological level, I suppose.

I'm taking leflunomide alongside baricitinib (soon changing to a different biologic though) so I can't really say how well it would work for the pain on its own (are you on a biologic as well?). I was on MTX before leflunomide and although it seemed to work alright in combination with a biologic, I had too many side effects and was therefore put on leflunomide, which suits me better.

Good luck with it and hope this is usueful!

Best,

Christine

Fantasy3 profile image
Fantasy3

HiI’ve been on it for 2 months now.

No side effects apart from the odd headache.

From what I understand is the sickness should wear off as your body adjusts🤞

It started to work for me quite soon,around 4 weeks.

But I also take naproxen 1a day,and amitriptaline at night.

Good luck

X

medway-lady profile image
medway-lady

It's really a bit early and I took it for years, My best advice if you expect side effects you'll probably get them so be warned ! lol It didn't make me anything more than vaguely queasy for a few days but the pain was awful and I was in agony. But I stuck with it and some 12 weeks in, I woke up and felt great. All symptoms gone and went into remission for years. I'd suggest you take with a large glass of water at night and forget about what you might get as a negative and anticipate it working and working well.

Bad headaches that wore off with time, and some skin issues (I have adult acne and am prone to cysts anyway), but saw benefit within 4 weeks or so and was finally able to wean off pred thanks to taking it. I was taking it alongside methotrexate, but we concluded the mtx did nothing and stopped that at the start of this year - my disease wasn’t under control, but the benefit I did have was purely the lef on its own. Unfortunately, I had to stop it due to a wonky liver in March, so now waiting to get that sorted before I start treatment with a biologic, but I would have happily stayed on it otherwise.

Juliesb profile image
Juliesb

Hi. I've been on leflunomide for about 8 years. I had similar side effects for first month then nothing since. It's been the best one for me. Good luck.

Angels54 profile image
Angels54

Hi I’m taking it had terrible diarrhoea and stomach cramps , not god me I’m afraid .

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