Well, I just could not do methotrexate. It was awful. Started leflunomide yesterday. Have any of you used this drug? Side effects?

[Interpreter]

Leflunomide

[Sunnyseas]

Hi Interpreter - I couldn’t tolerate mtx either and started on Leflunomide a few weeks ago, 20mg daily. I felt tired the first week or so, & tummy upset but am now feeling ok on it. Nothing as unpleasant as mtx. Blood tests every 2 weeks for 6 weeks, then every month - they need to check bone marrow & liver. Also need to check you blood pressure weekly as it can raise it. I hope it suits you and helps with your RA, ss

[Interpreter in reply to Sunnyseas]

That's so good to know. Nausea and diarrhea were very intense with mtx. Had a little tummy issues this morning but feeling ok now. Of course, I only have taken it once so far. Lol

[skinnycappuccino]

Hello Interpreter 😊

I've been on leflunomide since around 2012/13 as I couldn't tolerate a high enough dose of the methotrexate. I've never had any side effects from leflunomide so I hope it'll be the same for you!!

Good luck with it and all the best,

Christine xx

[Windonmyface]

I’m also interested in hearing people’s experiences with Leflunomide. I’m about to give up on MTX due to stomach issues (even though I inject and I’ve given it almost a year). I hate to mention this, but I’ve heard alcohol is a no-no with Leflunomide, and I enjoy a glass of wine twice a week or so with dinner. Thoughts anyone?

[skinnycappuccino in reply to Windonmyface]

Heya, my rheumy says you can have a drink on Leflunomide and I've never had any problems with alcohol and leflunomide (I like a glass of champagne or a bit of whiskey every now and then ) But maybe it also depends on the person and how well one's liver copes with all the meds?

Best,

Christine

[Windonmyface in reply to skinnycappuccino]

Thanks for the input! I think the key is “every now and then.”

[skinnycappuccino in reply to Windonmyface]

Exactly! I think as I have regular blood tests, I'd be able to see any change in liver function anyway. My rheumy's quite pragmatic and he always tries to let me live my life as normally as possible.

[Windonmyface in reply to skinnycappuccino]

I like your doctor’s approach. On MTX, my livers have been fine with a twice a week glass of wine. Hopefully it won’t be different with the Leflunomide.

[Gjkas]

Hi Interpreter, I couldn't take methotrexate because it was causing problems with my blood. I have very large platelets and the methotrexate was only causing me more trouble. So I was put on Leflunomide, but after 3 days of taking them I was admitted to hospital because it was thought that I had a blockage..But it wasn't a blockage at all. It was the side effects of taking the drug Leflunomide. I was taken off them straight away.

In January I had my 1st vaccine. OMG, I was I'll for 8 weeks. I couldn't stop going to the Loo for 7 days. I lost so much weight ,because I couldn't eat anything. .

Then one evening while we were watching the TV, they were discussing the vaccine and named one of the drugs that are in the vaccine. Some of the drugs in the Coronavirus vaccine are the ones used for Rheumatoid Arthritis. One especially, is the one called Leflunamide.

No wonder that I was so I'll. So I have discussed it with my GP and we've agreed that I'm not to have my 2nd jab..

I'm housebound and can't go anywhere, so I'm not really worried about not having the vaccine. I'm not a risk to anyone.

But when my Family visit indoors,they all wear masks because of me.

Leflunamide is supposed to be a really good tablet for Rheumatoid Arthritis.

But unfortunately it wasn't good for me.

I am on quite a lot of other medication, so perhaps there was an interaction with one of those. I really don't know.

We are not all the same. I hope that the Leflunamide works for you..Stay Safe. 🤞

[vonniesims]

It raised my BP and thinned my hair otherwise ok

[stupidra]

Hi, I tried an array of medications before I found one that worked for me I had really bad headaches from methotrexate and lefluminide didn’t help me, I was eventually put on Rituxan which did the job, unfortunately I am not allowed it at the moment due to Covid so now I’m waiting to go on Baricitinib 😒

[mickeysmom34472]

I was on methetrexate and had to stop because it cause it cause a perforation in intestine. I have been on leflunamide for over a year and no side effects that I am aware of

[nomoreheels]

I do tolerate MTX well but have tried double therapy with LEF. Unfortunately it had be stopped but, as always, it's impossible to know prior to taking them as we each respond differently. I hope it helps you with no or tolerable side effects. Just give it long enough to see if it does help control your RD, nobody can ask more of you.

[rounder]

Methotrexate made me feel like death warmed up 😓 but I had no real issues with leflunomide. Unfortunately it suppressed my immune system too well and I got lots of infections so was switched to abatacept which has been really effective with absolutely no side effects. Good luck with the leflunomide. X

[Interpreter in reply to rounder]

I have not heard of that drug. The leflunomide doesn't give me diarrhea but I do have to go to the bathroom alot. Lol

[Angels-delight]

Yes , a previous Rheumy stopped the medication. My new Rheumy reduced the dose from 20mg to 10mg and I am fine with the lower dose.

[Mmrr]

I take a half dose of leflunomide with toficitinib. My BP has gone up a bit, treated with antihypertensives otherwise I've had no problems.I did not tolerate MTX well.

[quatjen]

Hello I’m also taking Leflunomide, just last three weeks have gone from 10mg to 20mg as experiencing more pain, been taking since December 2020 my hair is thinning hairdresser can see regrowing hairs not overly concerned yet, do have to go to the toilet more but not in any pain from that, I would rather be on this than MTX I don’t have the same days of each week to recover from the side effects, as they say everyone is different I couldn’t tolerate sulfasalazine made feel really crap. I enjoy a little glass of wine now and again or a gin & tonic. Wish you well and you start feeling better soon.

[Interpreter in reply to quatjen]

Yes! Sulphasalazine stopped the ra pain, but the intense headache and stiff neck, rapid erratic heartbeat, etc, were nasty. Thanks for your input.

[smilelines]

Same. Methotrexate was brutal! Leflunimide is better but my skin and hair and eyes are dry. But this might not even be from it.🤷‍♀️ Liver enzymes are up so I won’t be drinking my missed delicious red wine. I think once you are on it for a while you will know if you can have a few drinks. If your liver is fine I can’t see why you would not be able to drink in moderation. I would maybe not right now though……. Not until you know if your liver is handling it ok.