Leflunomide and Diarrhea: What Users Say

• Not...
• Taken for 1 to 6 months
• August 20, 2020

For Rheumatoid Arthritis "Put on Leflunomide 10 mg 7 weeks ago for Polymyalgia Rheumatica. Increasing symptoms of weakness, diarrhea, nausea, cramps, palpitations, pins and needles, migraines with aura, and the most awful shortness of breath. I came off Leflunomide 3 days ago and expect I shall have to suffer the effects for at least 6 months before the drug leaves my poor body. My rheumatologist says these symptoms are not caused by Leflunomide. I feel so weak and helpless. I wish I had been warned. I feel angry with my rheumatologist, who took two weeks to respond to my cries for help. Be warned."

• Kir...
• Taken for 1 to 6 months
• April 19, 2019

For Rheumatoid Arthritis "Diagnosed with RA in May 2018. I was diagnosed with T-cell lymphoma in 2004 and breast cancer in 2013, so am limited in which RA drugs I can take. I tried Plaquenil, but it did nothing and my inflammation markers actually went up. Switched to Leflunomide last October. I was feeling much better, aside from the diarrhea, and my inflammation markers were in the normal range. Then in mid-February, my hair started falling out, plus I was still going to the bathroom 3 to 5 times a day. I tried to hang in there with it, but I was having severe PTSD from losing my hair again, just like after chemo. Plus, I got hemorrhoids from so much time in the bathroom that required surgery. My doctor took me off it and prescribed cholestyramine to wash it out of my system. My rheumatologist is at a loss on what to prescribe next. There may be nothing."

• Pet...
• April 30, 2019

For Psoriatic Arthritis "After many years, I was diagnosed with Psoriatic Arthritis (PsA), and my rheumatologist put me on leflunomide. After six weeks, it began to work. I’ve been on it for 5 months now, and I have been able to work out 5-6 days a week: weights, rehab, and yoga. (It was taking me 3-4 days to recover from flares with the lightest exercise before.) I have gotten SO much strength and flexibility, and I am noticing muscle when I look in the mirror. My quality of life is remarkably improved! Side effects: diarrhea, moderate at first but now improved. Mild tinnitus, and balance improving more slowly than strength and flexibility. Some burning and cramping in feet and legs when fatigued from exercise or dancing (Yes! Dancing!). Hair loss comes in waves. The first batch of lost hair is coming back fluffier and about half white. Hope it’s reached equilibrium now because I had thick hair, but it’s average thickness now. Blood pressure and liver good. I hope it doesn’t stop working!"

• way...
• February 1, 2012

For Rheumatoid Arthritis "I have been on leflunomide since 2007. It took a bit to kick in, and once it did, I felt better. I was having a lot of diarrhea, so my doctor decreased my dose from 20 mg/day to 10 mg/day. It made no difference in the diarrhea, so we decreased it, and I tried Imuran. About 2 weeks after switching, I was still having issues with diarrhea, and it was clear the Imuran was not helping. So we went back to leflunomide 20 mg/day ASAP. In the beginning, I had some nausea, but I began taking my dose at bedtime and had no other problems. I now take it in the morning with no nausea. I have hair loss, but not enough that others notice. I simply take folic acid to combat that."

• Mag...
• Taken for 1 to 2 years
• September 6, 2018

For Rheumatoid Arthritis "I am 66 yrs and was treated with Methotrexate 15 mg weekly and folic acid daily, and intermittent steroids, but a year later, joints started again on this treatment. Doc added Leflunomide 20 mg daily (which worked in 2 weeks), and I've been on it for 18+ months. My bloods were normal 2 months ago. Have to keep an eye on my blood pressure. Both Methotrexate and Leflunomide cause a loose bowel, which I put up with. I am taking 2 tabs of folic acid, i.e., 10 mg daily, as it seems to be better for dry mouth and skin. Sometimes I take 5 mg prednisone for a few days when I've got finger, etc., swelling from overdoing things. I tried a break from the Leflunomide (continuing Methotrexate), and noticed joint symptoms returning in a week. I am satisfied with this treatment and am in remission."

• Ang...
• December 9, 2020

For Rheumatoid Arthritis "This is not about me but my husband. He is fighting for his life in ICU. He started Leflunomide in July 2020 on a dose of 10 mg, which was increased to 20 mg after a month. At the end of August 2020, he started having violent diarrhea. We questioned it with his nurses and were told, as he'd been okay for the first weeks, 'It wasn't the drug causing his problems.' So the GP organized a bowel cancer check and colonoscopy, which proved negative. Then he started coughing on Nov 9, 2020. Checked for Covid, negative. A&E on Nov 22, out with strong antibiotics, then ambulance call at 6 am on Nov 26, in hospital on oxygen, which didn't help. He was transferred to ICU on December 1 and ventilated on December 6. They started the 'washout' last week. Still a few days to go. We are praying it will work. My warning to everyone: Do not take Leflunomide, it is dangerous."

• Anonymous
• Taken for 1 to 6 months
• May 9, 2018

For Psoriatic Arthritis "I went on this drug in November 2017 (0.20 mg), and the biggest side effect at first was diarrhea, which was tolerable. My skin cleared up 100%, as well as any joint pain, and I thought I had found my miracle drug. But after 4-5 months, I now have nausea, have lost 10 pounds, all I want to do is sleep, and I am emotionally in a very dark place. My rheumatologist doesn't think it's the leflunomide, but I feel as badly as I did when I went on methotrexate, (which I couldn't tolerate). The symptoms are the same. So I went off of the leflunomide a week ago, but still no relief from side effects. Does anyone know how long it takes for this drug to get out of one's system?"

• hur...
• Taken for 6 months to 1 year
• September 9, 2019

For Psoriatic Arthritis "Leflunomide has been the only med that I am able to tolerate as I am the queen of side effects. If there is one to be had, I will have it. My first time on Leflunomide was at 20 mg/day. After a few months, the nausea, vomiting, and diarrhea were ridiculous, and I had to stop. At that point, I had lost about 15 pounds. After a couple of months off, I started again at 10 mg/day. It took 3 months to get to the extreme nausea and another 6-8 pounds off. I stopped about 2 weeks ago. I am able to eat now, but nausea persists (not as severe). Since this seems to be the only drug I can handle, I will consider restarting yet again but need a breather first."

• Mis...
• Taken for 1 to 6 months
• May 8, 2018

For Rheumatoid Arthritis "This was the worst medication I have ever taken in my life. I took it for 4 weeks when the violent vomiting and diarrhea began and lasted for 8 hours. Doc said to stop taking it. Vomiting stopped, still have the diarrhea the next day. I have never in my life been so sick from a medication. Now we move on to Humira."

• Suj...
• Taken for 6 months to 1 year
• April 25, 2023

For Rheumatoid Arthritis "Following some years of taking methotrexate for RA, my doctor switched me to leflunomide at first 10 mg, and then 6 months later to 20 mg daily doses. She says my RA is in remission, but my joints still bother me. The biggest problem is severe and explosive diarrhea. I read that this is common in a third of patients taking leflunomide. She cleared me to take loperamide, a common OTC pill for diarrhea, but it doesn't adequately control diarrhea, which prevents me from enjoying meals or traveling."

• Aph...
• April 8, 2018

For Rheumatoid Arthritis "I had nausea, severe nausea. I had diarrhea to the point where sometimes I had to wait until everything was emptied out of my guts. I had severe stomach pains. I had no energy whatsoever. I could wake up feeling great, but when I took it, I just lost all of my energy. I felt sick to my stomach, and even after being off of it for days, I'm still having side effects with my stomach: diarrhea, cramps, and also the pain in my back from going on. My muscles are sore and achy. It's hard to keep water in me, it made me feel extremely dehydrated. No matter how much water I drink, nothing that I can think about this medication."

• Mar...
• Taken for 1 to 6 months
• August 22, 2017

For Rheumatoid Arthritis "It has helped with inflammation and pain to a degree, but not enough to negate some of the side effects. Diarrhea, to being 'very regular,' was tolerable, but the pneumonia was not. Have been experiencing otitis media for almost 3 weeks, and the onset anxiety has been keeping me awake/waking me up several times a night. To be fair, I do not tolerate meds very well at all (maybe being a redhead/drug interaction issue), so hopefully a different result for others. Not sure if I truly want to stop or not as it did help with the pain initially, and possibly more if I stay on it."

• Kat...
• Taken for 1 to 6 months
• December 9, 2019

"I was diagnosed with dermatomyositis about nine months ago, and Plaquenil wasn't enough, so I started MTX (methotrexate) in late spring. I was not able to tolerate the side effects, which made life a nightmare (nausea, vomiting, severe diarrhea, headache, fatigue, hair loss, blurry vision, etc.). I stuck with it for four months before asking my rheumatologist to move me in a different direction. After coming off MTX, we did a course of prednisone and then ramped up on Arava. Miracle! After experiencing serious muscle weakness, mechanic's hands, joint pain, and fatigue, I'm at the gym four days a week and now fully able to take on all of life. Have a few minor side effects (most notably headache and nausea), but not enough to keep me down! I love this drug!"

• Rak...
• Taken for 6 months to 1 year
• December 14, 2022

For Rheumatoid Arthritis "On a leflunomide daily dosage of 20 mg. It caused chronic GI upset: diarrhea and gastritis. It did relieve RA symptoms, but I felt sick for 8 months. Endoscopy revealed gastritis. I would not recommend this drug."

• BH1...
• Taken for 1 to 6 months
• August 14, 2024

For Psoriatic Arthritis "Serum-negative RA diagnosis. Swollen joints and tendons, fatigue, headache, brain fog. 20 mg/day. The API is well tolerated, no diarrhea, no GI issues. Increased blood pressure. Started to have efficacy after 3 weeks. Works well. Have scalp issues not resolved yet (50% hair drop, red painful bumps not folliculitis, white scale, just started meds.)"