Has anyone had experience w Leflunomide( Arava)?

My Dr put me on 20 mg of Leflunomide are the same time she started me on Prednisone (30mg). I’m now down to 5 mgs and my shoulders and hips are starting to get very sore.
I can’t say if the Leflunomide is helping me or not. It looks like it’s going to take some time to get below 5 mgs.

Side effect from Leflunomide:
I am the rare person who had serious liver damage from Laflunamide. I had to stop it immediately and then go back on prednisone. I mention this to warn folks to be aware of potential side effects and see your doc immediately.

How did you know about the Lefluimide? Blood tests? I may have gotten a detached retina which may be from 2 years of prednisone. I’m down to half milligram a day but I’m having a little bit of a flare two weeks after I went from 1 mg to 1/2 mg and I’m a little concerned about both taking the prednisone because of the retina and also not taking the prednisone because of the pain. Any advice for those of you who went down to half of milligram as to how you stopped completely?

20 mgs is highest dose of Lefludimide but they also make 10 mgs. I’m a little unclear as to how much the leflutamide is helping myself. I was put on it at the same time that I was still on prednisone. I asked the doctor about tapering the Lefludimide and he said I would go down to 10 mg. I do know it’s not as fast acting as prednisone. I think it’s important to get off the prednisone first before I try to take the leflutamide. I also think I need to go on an anti-inflammatory diet. I think that may be a game changer.

I had PMR 2024. Was put on Prednisone 20mg. Weaned off slowly over two years! Had a couple of flares so my pred went up sometimes. My Rheumatologist added Lefludimide. I have been taking that since May 2025. Prednisone was finished end of Feb. Lately about 3 weeks, I have been getting extreme nausea and soft stools. I am having a liver panel and abdominal ultrasound today. Anyone else get those symptoms when just on Lefludimide ? I read it can cause nausea.

I did not get nausea but def have had disgusting soft stools - however not necessarily consistent so hard to know if it’s Leflunimide. We have very similar stories and timing. Finally off Prednisone for 6 weeks now. I also got a pelvic ultrasound w nothing found. They told me they thought the PMR had morphed into rheumatoid, but I don’t have the RA factor in my blood. I’m trying to wean off the Leflunomide. Who knows - just seems a crapshoot but I know I got the PMR from the Shingrix vaccine. The first shot which ran roughshod over my immune system. I don’t want to take anything that suppresses my immune system anymore. Apparently I can just stop taking the low Leflunomide or decrease dosage - hard to know what to do.

this medication definitely upsets many people stomach as you were saying I’m kind of taking one day at a time and hoping this medication will help me because the first time it really did not help me my appetite is not very good but I kind of shove the food down as much as I can. i’m hoping things will improve with this medication as my body gets used to it but I don’t know so far I’m doing pretty bad with most of my medication’s!!! Wishing you the very very best going forward I hope this medication works out for you. Also it’s not a bad idea to speak to Rheumatologist and see what their feelings are if it gets like that really not so good it’s a good idea to discuss it with you Rheumatologist make sure that you know it’s OK for you to take it and I switch to another one who knows I can’t hurt if you really feel crummy speak to Rheumatologist and see what the Rheumatologist has the same again best wishes to you going forward.