Leflunomide and Hair Loss: What Users Say

• Tin...
• March 6, 2014

Leflunomide for Rheumatoid Arthritis "I've been on Arava for over 10 years now. At first (following the loading dose) I was taking 20 mg daily. I went from not being able to dress myself to being completely independent and relatively pain-free. I do have fibromyalgia, so there has been some muscle pain with that. I lost quite a bit of hair at first, but that stopped. After 7 or 8 years I asked my doctor if I could try to taper down. I went from 20 mg daily to 20 mg every other day. I have mild psoriasis, which flared when I cut back, but eventually it cleared up again. After a year, my doctor decreased it to 10 mg every other day. The psoriasis flared again, but is now gone, and I am maintaining at 10 mg every other day and doing well."

• kri...
• January 24, 2013

Leflunomide for Rheumatoid Arthritis "Was on Arava for a little over a year. The hair loss, pain from the hair loss, gastrointestinal problems, and the infections are just too much. My hair is so thin. I went to my doctor and had it stopped. I lost another 6 lbs in 2 months, and that is with the introduction of Ensure. I hope others have a better experience than what I did. I am 27 years old, and every day I felt life leaving me little by little."

• cho...
• December 31, 2012

Leflunomide for Rheumatoid Arthritis "I started taking Arava in Sep. 2012. Two months ago I noticed my hair was falling out in the shower, and now in December my hair is so thin you can see my scalp. I also have to blow my nose at least twenty times a day. And now I am getting sores in my mouth. I am not sure if I want to stay on it."

• cho...
• December 31, 2012

Leflunomide for Rheumatoid Arthritis "I started taking Arava in Sep. 2012. Two months ago I noticed my hair was falling out in the shower, and now in December my hair is so thin you can see my scalp. I also have to blow my nose at least twenty times a day. And now I am getting sores in my mouth. I am not sure if I want to stay on it."

• Anonymous
• June 3, 2009

Leflunomide for Rheumatoid Arthritis "I took Arava for about one year. It worked fabulously for the rheumatoid arthritis. I was even going to aerobics and kickboxing. However, my hair started to fall out and I ended up with no eyebrows. Needless to say, I stopped taking it and my rheumatoid arthritis has not been good ever since. My hair grew back but in some spots it did not. I still have some bald spots in my eyebrows. I was not very happy about that as I am only 35."

• Anonymous
• June 3, 2009

Leflunomide for Rheumatoid Arthritis "I took Arava for about one year. It worked fabulously for the rheumatoid arthritis. I was even going to aerobics and kickboxing. However, my hair started to fall out and I ended up with no eyebrows. Needless to say, I stopped taking it and my rheumatoid arthritis has not been good ever since. My hair grew back but in some spots it did not. I still have some bald spots in my eyebrows. I was not very happy about that as I am only 35."

• CaA...
• Taken for 1 to 6 months
• April 9, 2016

For Rheumatoid Arthritis "Oh wow, what a relief. I was on weekly injections of 17.5 mg MTX and got to feeling toxic. I have switched to a daily 10mg tablet of Leflunomide and feel great. No more couch surfing from tiredness, depression, or pain. I feel great, however, my hair is falling out and has thinned to a stage of embarrassment :("

• CaA...
• Taken for 1 to 6 months
• April 9, 2016

For Rheumatoid Arthritis "Oh wow, what a relief. I was on weekly injections of 17.5 mg MTX and got to feeling toxic. I have switched to a daily 10mg tablet of Leflunomide and feel great. No more couch surfing from tiredness, depression, or pain. I feel great, however, my hair is falling out and has thinned to a stage of embarrassment :("

• Kat...
• Taken for 1 to 6 months
• March 3, 2020

For Rheumatoid Arthritis "Leflunomide has brought me back to life in just 2 months on it. (And my thick hair is no different than prior!) I see hair loss can be a side effect. Not for me. Grateful to my MD for starting this medication."

• MaB...
• Taken for less than 1 month
• January 27, 2020

For Rheumatoid Arthritis "I have had RA for 35 years and have been on numerous drugs, including every biologic on the market. In March of 2019, while taking Humira, I developed a skin condition initially diagnosed as psoriasis. I then went through three more biologics, which made my condition worse. Finally, my dermatologist determined that the skin condition was a reaction to all the biologics in my system. My rheumatologist then put me on Arava. I have been taking it for 26 days, and my hair has fallen out, every joint in my body has been painful and swollen, and my back (I have an existing problem with back pain) has hurt to the extent that I cannot stand long enough to take a shower. I have been bedridden for the past week, so this morning I called my doctor and told him to take me off this medication."

• Sam...
• Taken for 1 to 6 months
• October 28, 2013

For Psoriatic Arthritis "I was prescribed leflunomide for Psoriatic Arthritis, 20mg each day, in May 2012. For the actual treatment of my arthritis, I can honestly say it was a 'wonder drug.' I noticed a huge improvement almost immediately, and this drug agreed with me so much more than Methotrexate & Sulfasalazine, both of which I had also been taking. The biggest negative for me was the HUGE hair loss I suffered. I had experienced some hair loss on Methotrexate, but this was on a different level, so much so that I stopped taking Leflunomide in November 2012. Being a female in her early 40s, this was a decision I felt I had to take as the hair loss was so distressing."

• She...
• Taken for 1 to 6 months
• February 29, 2020

For Rheumatoid Arthritis "I have been on leflunomide 10 mg for almost a month, no side effects, just some hair falling out. Then the doctor raised it to 20 mg, so for about over a week I have been nauseous, headache. My eyes feel like they are burning, and I feel more muscle aches, swelling hands, hair loss. Can anyone tell me if this gets better, being on the 20 mg? I don't see muscle aches as a side effect, so I'm not sure if it's my fibromyalgia? I just overall feel blah."

• She...
• Taken for 1 to 6 months
• February 29, 2020

For Rheumatoid Arthritis "I have been on leflunomide 10 mg for almost a month, no side effects, just some hair falling out. Then the doctor raised it to 20 mg, so for about over a week I have been nauseous, headache. My eyes feel like they are burning, and I feel more muscle aches, swelling hands, hair loss. Can anyone tell me if this gets better, being on the 20 mg? I don't see muscle aches as a side effect, so I'm not sure if it's my fibromyalgia? I just overall feel blah."

• Evi...
• Taken for less than 1 month
• August 12, 2017

Leflunomide for Rheumatoid Arthritis "I'm posting this for my mother, who is not able to type like she once did as a result of this medication. Methotrexate was also a difficult med, which caused confusion, depression, loss of balance, hair loss, and an INCREASE in joint pain. Arava had similar effects, but instead of 5 weeks as with Methotrexate, she was only able to tolerate 3 days of Arava! (at 1/2 dose per rheumy recommendation). She had symptoms very much like a stroke the evening of the third day - unable to speak more than a word or two, not to mention absolute terror as well as the effects listed above. For anyone keeping track: she waited a full 2 weeks between stopping Methotrexate and trying the Arava. After 5 weeks now, she's ALMOST back to normal. Beware!"

• 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."

• Bre...
• Taken for 1 to 6 months
• September 15, 2018

For Rheumatoid Arthritis "Finally, after 10+ years of RA crisis after another, I feel hopeful. I definitely need to take the leflunomide with food in my stomach and before going to bed at night. I’m still very tired, but bone/joint pain has diminished. This must be the 6th different RA med I’ve tried since diagnosis, and I wish I’d have done it earlier. I continue to have regular lab work done to monitor liver levels, and I monitor my BP daily. When I see my BP creeping up, I skip one nightly dose of the leflunomide, and it comes back down. Hair is definitely thinning, and I see my scalp through my thin hair, but I don’t care. I can walk, feed myself, shower myself, which is fantastic!!! I still require some assistance with daily tasks, but my quality of life has tremendously improved."

• Anonymous
• December 16, 2021

Leflunomide for Rheumatoid Arthritis "Caused stomach upset, worse the first two weeks and then slowly subsided. It really did help with pain. However, I was only on it for about two months and lost a substantial amount of hair. As a middle-aged woman, thinning hair is another issue to deal with as you face all the challenges of aging, and this was really a disappointment because I’m questioning if my hair will grow back now that I’ve stopped the medication. It also gave me mouth sores and some acne, which otherwise I have always had clear skin. Pain relief vs. hair? It’s awful that we have to find out if that will be the effect the drug will have on each individual, for its effects are different for all. But personally, I can’t handle this amount of hair loss, maybe a little hair loss I could have tolerated, but not at this level."

• 38y...
• August 25, 2015

For Rheumatoid Arthritis "Started this medicine very slowly (10 mg every other day) for 4 weeks, as I was nervous about a couple specific side effects (stomach and higher blood pressure). The only side effect during that time was headaches. Then I couldn't wait to increase to 10 mg every day due to a great deal of pain, and my stomach and blood pressure were stable. Just by increasing it from 4 tabs a week to 1 tab every day, I've only had a couple small headaches, and pain was greatly decreased in my fingers. So far (at 3 weeks), still leaves a lot to desire. My wrist still hurts a great deal, having moderate upper GI problems (extra 'severe' acid reflux), hair thinning, and concerns about the future and/or long-term side effects. Will stay on it for now."

• Cat...
• Taken for less than 1 month
• March 13, 2018

For Rheumatoid Arthritis "I have been on this medicine for only 1 week. Every day I am feeling worse, not better. I have zero energy, I have a general feeling of discomfort, headache, clammy, and more pain than before I started. I kept thinking this would go away, but after reading some other reviews, I don’t think I want to wait for the rash, high BP, and hair loss. Calling my Dr tomorrow!"

• Hol...
• November 30, 2019

For Rheumatoid Arthritis "I have only been on this medication for about 1 month. It is November 2019. I have so far immediately experienced lots of hair loss, my IRA to be worse now than it has ever been, even before I was ever treated with anything for rheumatoid arthritis. I am also experiencing lots of other sore areas, like my shoulder, neck, arm, back of my legs, and thighs, and they aren't necessarily joint pains, more like a muscle tissue type of soreness, but just popped up out of nowhere for no reason. I definitely believe it's all connected somehow. Right now, the soreness in my left arm, shoulder, and neck is so bad I cannot lift my arm by itself without my other arm holding it to reach up over my head. I've never had this problem before. Definitely going to be calling the doctor Monday."

• Gin...
• Taken for 1 to 6 months
• October 10, 2024

For Rheumatoid Arthritis "Began taking leflunomide in June of 2024. I immediately noticed a reduction in knee joint pain, which I had been having problems with since January. I then started to notice hair loss (big clumps every time I brush my hair) and low-grade fevers every day starting in August. I went off the leflunomide about 6 days ago and began taking a washout medicine to ensure all of the leflunomide is out of my system. It is an 11-day washout, and I have noticed that my hair loss is less, but I still have the low-grade fever every day (99.4-99.9). Is anyone else experiencing daily fevers with the medicine?"

• swe...
• Taken for 1 to 6 months
• September 24, 2019

For Psoriatic Arthritis "I took this leflunomide drug for my arthritis about 3 years ago. I only took it for 3 months. I stopped it myself after I noticed my hair falling out in clumps and I was becoming very short of breath. I have chronic bronchitis, so I went to my pulmonary doctor. He told me I had something called interstitial pulmonary disorder. When I told the nurse practitioner at my arthritis doctor about it, she said that's why they used it because it had no side effects. I told her she needed to do more reading on the subject. I've been on meds for my COPD, and so far I'm better in that respect, but my hair has not yet come back in. I'm very upset over it. I should never have taken that medication. It should be taken off the market."

• TX ...
• Taken for 1 to 2 years
• January 9, 2023

For Rheumatoid Arthritis "Be aware of any symptoms that you may have while on this medication. Report them to your doctor as soon as you can, and pay attention to your body. My rheumatologist prescribed leflunomide after no success with MTX, sulfasalazine, Plaquenil, and Humira. While on this drug, I developed terrible side effects including tingling/numbness in my feet and hands, high blood pressure (never experienced before), extreme weakness and fatigue, shortness of breath, dizziness, ringing in the ears, increased back pain (which led to another surgery), 2 ruptured Achilles tendons (surgeries pending), and a continuous tearing/shredding feeling at joints, loss of sensation and motor function in my lower extremities, including sexual dysfunction and incontinence, severe hair loss, heart palpitations (diagnosed as SVTs), severe muscle cramps, difficulty swallowing, vision changes, and diarrhea/stomach issues among other things. Once it was discovered I had leflunomide toxicity, I did a cholestyramine flush. It's been over 2 years, and I have had minimal improvement."