Has anyone tried the medication leflunomide?

I went on Leflunomide (because my insurance turned down Humira) and got off it when my hair started falling out! My doctor was trying to get me off prednisone … it makes me feel junky at doses above 5mg.

Perhaps it was the prednisone that was responsible for your hair loss it certainly did that to me!

I too tried it and couldn’t handle it. I also lost much of my hair. It was falling out in large handfuls. It took a little while but it grew back and actually thicker and curlier than before. My doctor put me on methotrexate instead. I can’t tell if that is working, it seems to me it’s all about the prednasone which I can’t seem to get below 4mg. without lots of pain, but I keep trying.

I also took it for awhile until my hair began to fall out in large handfuls. When I discontinued taking it my hair stopped falling. I was and am still on Prednisone. My hair has slowly grown back in thicker and curlier than before. I have no hair loss at all now. Good luck!

I tried it too because i liked the idea over a steroid sparing option. That said, I also started noticing my hair thinning after 3 weeks or so and bailed instantly! It freaked me out! Thankfully, my hair came back thicker with more curl.

I too had severe hair loss, while taking leflunomide. I was taking prednisone as well. My Dr. took me off leflunomide but kept me on the prednisone. She started me on methotrexate instead. After a short period of time my hair started growing, thickening and totally stopped falling out.

I’ve been on it for over a year with no issues. Was on methotrexate before it and had zero quality of life, nauseated all the time, sleeping for days at a time and hair loss.

Hi all. I have been on a roller coaster of pred doses because at first I was clueless and my rheumy didn't tell me the nuts and bolts of PMR ...let your symptoms be your dose guide...she hates pred and gave me a schedule which sent me in a tailspin. After learning a lot...thank you everyone here..it took awhile but I ended up on a dose that gave me a decent response but the.push to reduce has caused a lot of PMR heartache do I keep having to go up. SO...my rheumy wants me on leflunomide (years ago tried methatrexate but I didn't tolerate it well got 2 infections in first week). My concern is I am worried about the side effects. She is worried about the pred.
If she had done a slower lower step down I could be on a much lower dose by.now...so yes I am angry. She wants.me on this new med so she can lower the pred. It does give me strength to say ok but we are going slower for sure. So I am wondering if anyone has gone this route and what your experience was...did it help;.did you have side effects? Increased infections? Anything you want to share. I really hate the pred...I am experiencing all the usual side effects. But my PMR pain and fatigue has been the worst I have experienced of any of my collection of autoimmune conditions.
So thank you for reading this. Please take care of yourselves as we all battle to be pain free and functioning. Be well.

Hello @njtodctode, You will notice that we moved your post into an existing discussion on the same topic here so that you can read the experiences others have shared. If you click the link below it will take you to the beginning of the discussion where you can read the posts of @dermnurse68, @lorinfc, @jmcc and others:

--- Has anyone tried the medication leflunomide?: https://connect.mayoclinic.org/discussion/medication-1/

Hello. I read a bit about the side effects of Leflunomide and was afraid to try it. I forget the exact ones that had me anxious, but I know that it takes a long time to get fully into your system, and then if you don't tolerate it well, it takes a long time to get out of your system. Unlike prednisone, which is pretty much completely gone one day after your last pill.

So I asked if I could try to manage my symptoms through diet and exercise, and while I still have symptoms, they did get a lot more manageable until last summer, when I got Covid, and then things seemed to get worse again. I went on another round (month) of prednisone, and now am taking Meloxicam, an anti-inflammatory.

I tolerated the steroids well, but my rheumatologist doesn't seem to want me taking them any longer than a month at a time. So I'm still trying to find the right balance, and the Meloxicam is helping for now, but I'd like to get off of it and manage just with diet and exercise alone.

I'm looking for the best diet for PMR, to reduce inflammation and be overall healthier. There is so much conflicting information out there!