Starting leflunomide soon...

[Frankiefocus]

Hi everyone, so after 2 years on MTX my rheumy has decided to try me on leflunomide with the MTX. This is because Salfasalzine was making me depressed and hydroxychloroquine made my tinnitus worse. I read the side effects with leflunomide can be scary, has anyone of you experienced any?

[allanah]

Nope , been on it 6 years and is particularly good at getting my swelling down.

[ruth_p]

I didn’t have any other than the benefit of it helping. Good luck

[Hidden]

Lef is the only thing other than steroids that has helped me so far. The only side effect I really had was headache for a few days after introduction and subsequent increases, and it did give me problems with my skin, although mostly just in the first 4 months of treatment. I have adult onset acne and am prone to boils, cysts, and abscesses to begin with, so found these sorts of issues flared a bit. That settled, though.

[WillowsMother]

I had various hideous side-effects from all the other DMARDS, including MTX... Then I tried Leflunomide about 2 years ago and have been mostly fine on it since then. I was getting some GI issues a year ago, but it was thought to be the prednisolone I was taking with it. Also some hair thinning, but again, it could be the pred or hormonal... So I've carried on taking it. The list of side effects can be daunting, but until you've tried it, you won't know the benefits it could bring you! Best of luck.

[Cal48]

Been on it for a year.mood much better than methotrexate.Helps the RA

Yes like you was scared but ok make sure you have blood tests.Good luck.

[Zer009]

Regret taking it. Skin where exposed to sun damaged. Recurring flaring, itchy sore skin, face, neck, top of torso - distressing. Salfazalazine same problem. Keep out of sun would be my advice, or sun lotion. My hair fell out too. Didn't stay on it very long but others seem fine with it?

[Anniebl24]

First dmard that did not make me ill enough to take time off work. It did not work 100% but was better in terms of inflamed joints. It gave me dry skin and hair. Believe it also took a bit of weight off me. Good luck I hope it works for you.

[smilelines]

I have been on it since February and it seems OK so far. It was much better than the MXT which I had to go off of because of huge stomach cramps. When I went to pick up my leflunimide pills the pharmacist asked if I was still on MXT. He said that both MXT and Leflunimide are hard on the liver and that I should NOT be on both at the same time. Maybe he is wrong but I wanted to let you know what he said. I think getting your blood work done is important.

[medway-lady]

I took it for years and a few side effects at first then remission. It was great I really hope it works for you. I wish I could still take it. It did appear to make the RA worse for a couple of weeks then just worked.

[Suzy-P]

I am on methotrexate and Leflumonide and have been for nearly 3 years. I was on methotrexate initially and then leflumonide was introduced. I have since decreased the methotrexate to 15 mgs a week. The combination works for me and I don’t suffer with any side effects - long may that last. Good luck

[Lizzy-m]

I've been on Leflunomide for over a year now, after fighting with horrendous side effects from Methotrexate. I can honestly say, the relief of not being sick every week was immense. I suffer no side effects from Leflunomide whatsoever, it works just as well as the Methotrexate. I, like all of us RA warriors still fight with flare ups and debilitating fatigue but life is so much easier when you're not being sick as well. Good luck x

[Mmrr]

Lefunomide is the one medication that I have had no side effects from, what so ever in over 4 years of RA meds.

I do only take a half dose (10 mgs day) along with a JAK inhibitor, but great no problems.

[mickeysmom34472]

I have been on leflunamide for a couple of years now, I was on mtx and it cause d=a perforation in my bowel. You may experience some morning diarhea at first but not so much after a while. That was my experience, no problems otherwise

[Arthritis_1]

I've been on leflunomide for over a year with mxt as other drugs did not agree with me. I have to say it's the best combination and no side effect. Just need time for it to get into your system and let the magic work😁

[liveinwoods]

I have been on Leflunomide for 3 years and it works for me. No side effects. MTX made my hair fall out which was distressing.

[quatjen]

Hi I’ve been on Leflunomide 10mg with hydroxychloroquine nearly six months all ok seems to be working, bloods ok and stopped steroids in February I asked if I could try this as I can’t have same days of work and try and contend with MTX, failed sulfasalazine felt sick, depressed couldn’t make clear decisions, feel my hair is thinner, skin is dry, but saying that I don’t think it’s down to one thing as I lost a lot of hair a year before being diagnosed, better than being in pain. Hope you get on ok 👍

[Moses5]

I have just taken myself off leflunomide because my skin is so dry even my eyelids are flaking ,my hair has got so thin as well as dry scalp, my clothes are full of what I call it bad dandruff, it’s so bad I’d wear jeans with black shoes or boots, the front is covered in dandruff, it’s horrible, I’ve tried every moisturising cream, even been to the doctors because it has caused bad irritation & im scratching & making my body bleed, & on one of my foot it’s so bad I’m actually pulling chunks of skin off to stop the itching, I’ve been on leflunomide for about 6 /7years with Sulfasalazine x 6 per day, & it gradually got worse over the years and I can’t stand it anymore, so taken myself off them , to see if my skin improves, i have told my consultant about this but he has done nothing about it even tho I got my GP to write to him about it is affecting me & how it’s getting me down, I haven’t seen my consultant for 2 years now because of the pandemic that’s why I’m doing something about it, been off them at least 6 weeks now, and have seen some improvement.

[K3-2]

I'm on Leflunomide + HXQ for 3 years now. The only side effect I get from LEF is neutrapenia with my neutrophils varying between 0.9 - 2.At the moment on 17.5mg LEF daily ( 20mg and 15mg on alternate days) as 20mg made the neutrophils go down but improved the RA. Now RA not great but neutrophils above 1 when on 17.5mg. Waiting for Rheumatologist to decide next move....

Wishing everyone a lovely Sunday and thanks for all your posts. ❤❤

[smilelines in reply to K3-2]

Hi In Canada we can't get the 15mg tablets for leflunimide. Are you able to get them or do you cut your pills. I am on 10mg alternating with 20mg. I was told by one pharmacist not to cut the pills as they have a time release coating. The rheumatologist said she cuts the pills all the time. I don't know what to think.

[Frankiefocus in reply to smilelines]

I have started the10mg

[smilelines in reply to K3-2]

Actually I am not sure if we can get 15mg here in Canada. Maybe the tablets are just not at the drugstores I have dealt with.

[K3-2]

I can get the 15mg tabs in UK but my pharmacist has to order it in. That's how I am on 17.5 mg Dailly I don't think I can cut the 10mg tablets accurately with my dodgy hands n fingers !

Sending you good Wishes x