Leflunomide for Rheumatoid Arthritis User Reviews (Page 2)

• Katie
• Taken for 1 to 6 months
• March 3, 2020

"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 affect. Not for me. Grateful to my MD for starting this medication."

• CaAfAm
• Taken for 1 to 6 months
• April 9, 2016

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

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

"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 bed ridden for the past week, so this morning I called my doctor and told him to take me off this medication."

• Buddy
• Taken for 6 months to 1 year
• February 20, 2020

"I developed shortness of breath. I stopped this drug about nine months ago. The shortness of breath continues. I discontinued Leflunomide on my own due to side effect of shortness of breath. My blood pressure was also elevated while on this drug. This shortness of breath has decreased the quality of my life. This drug is awful. I hope my breathing will get better over time. I am very angry, I wish I could go back in time and never start this drug, I am very angry if this will be my life now. The drug did not help the pain."

• franc...
• April 7, 2009

Arava (leflunomide) "I have been on Arava for 1 month. So far - hardly any side effects. It has improved the quality of my life in that I am not experiencing any pain. I will continue to monitor any side-effects over the next few months."

• PK Gal
• Taken for less than 1 month
• November 25, 2019

Arava (leflunomide) "Taking Arava about 3 weeks for RA, it gave me a bad headache. My head hurt really bad, and my neck, I couldn't turn my head. My hands got very weak felt like I had sprained them. My finger joints were inflamed and burning pain and ALL my joints hurt worse. I stopped using it and headache, neck and hand pain got better."

• Shell
• Taken for 1 to 6 months
• February 29, 2020

"I have been on leflunomide 10 mg for almost a month , no side effects just some hair falling out , then dr raised it to 20 mg , so for about over a week I have been nauseous, headache , My eyes feel like they are burning & 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 its my fibromyalgia? I just over all feel blah "

• Anonymous
• May 31, 2009

Arava (leflunomide) "I've been taking Arava for 12 months or so now. It worked in the early days but now, I have quite severe pain and am looking at starting to take Infliximab along side the Arava. With regards to side effects, none apart from the persistent, annoying tickly cough, which I've had now for about 7 months."

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

Arava (leflunomide) "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!"

• claud...
• October 9, 2019

"I couldn't take it . I took it for 12 days only because it took my doctor that long to get back to me. My head hurt really bad, and my neck, I couldn't turn my head, my hands got very weak and they burned and ALL my joints hurt. My Doctor told me to go to the ER. And STOP taking it. It was really awful for me. I hope I can get it out of my system. It made my arthritis much worse, I stopped taking it two days ago but my head and neck still are in a lot of pain! It was a horrible experience to say the least.. More like a nightmare of AGONY!!!"

• Mizlo...
• Taken for 6 months to 1 year
• November 25, 2016

"I have been taking leflunomide for about 8 months. The results have been very good. It took about three or four months to kick in, but my pain is virtually gone. Oddly, I have developed very brittle finger nails and my hair has gone from straight to wavy. The only other medicine I take is a blood pressure pill. So I can only assume this change came from the leflunomide."

• Kira
• Taken for 1 to 6 months
• April 19, 2019

"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 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 hemhorroids 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."

• Jeff
• August 30, 2019

"Leflunomide has put me in nearly 100% remission of RA in 3 weeks and, after 9 weeks I have no side effects. I just hope and pray none develop, as they have for many respondents on this forum! History: I was diagnosed with sero-negative RA in June of 2018 (writing this in August 2019) at age 62 and started with methotrexate immediately with limited, though meaningful benefit. Went through 6-18 week trials of 6 different biologics (currently taking Olumiant) without full remission but achieved about 60% reduction in all RA symptoms. My rheumatologist and I, not satisfied with my only partial remission, decided to add leflunomide to the mix (20 mg/day) about 2.5 months ago. As stated above, I am close to complete remission! I do get occasional pain in a few finger joints that goes away in a few hours and otherwise it has been like a "miracle cure!""

• Marig...
• Taken for 6 months to 1 year
• August 26, 2015

"My doctor first prescribed me methotrexate. I couldn't tolerate it very well so she switched me to lefunomide. It has been a big life changer in a positive way even though it may not be as strong as the methotrexate."

• snell...
• Taken for less than 1 month
• October 23, 2018

"I was prescribed Leflunomide by my Rheumatologist for severe R.A. I took it for only 4 weeks before I broke out in rash all over my arms, legs and buttocks. The rash wasn't the worst part, it was the itchiness that was horrible. It has been 2 weeks since I stopped taking it, and the rash and itching has not let up, now my skin is peeling."

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

"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."

• wayney
• February 1, 2012

"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 20mg/day to 10mg/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 20mg/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."

• clash...
• Taken for less than 1 month
• February 5, 2020

"I have been taking Arava for about 3 weeks now. I take 20 mg per day. At first, there were severe side effects: headache, tingling sensations in the feet, restless legs, severe dizziness, lethargy, and muscle rigidity. After about 2 weeks, these symptoms began to slowly decrease. I have not been taking this medication long enough to know if it will help me, but I did wake up today feeling better than I have felt in years. Hoping it’s not just a fluke or a coincidence."

• Holly...
• November 30, 2019

"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 is 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 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."

• 38yrs...
• August 25, 2015

"Started this medicine very slowly (10mg every other day) for 4 weeks, as I was nervous about a couple specific side effects (stomach & higher blood pressure). The only side effect during that time was headaches. Then I couldn't wait to increase to 10mg 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

"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!"

• Foxy_...
• Taken for less than 1 month
• October 20, 2017

"I was diagnosed a year ago in December. I started on Methotrexate (initially supplemented with prednisone). This combination worked well- I regained almost full ROM and most pain was gone. After 5 months on this, I developed constant daily nausea, vomiting, then dizziness, mouth sores, tinnitus (which I still have 4 months after discontinuing the drug), and liver damage. I went off this, fought with my ins. company for 4 months, and finally went on Leflunomide 2 weeks ago. In the last 2 days, I have now developed even more severe mouth ulcers, nausea, vomiting, chills and flu symptoms, and am becoming increasingly dizzy as the days progress. I stopped taking this yesterday. The pain of RA is severe, but the treatment has been so much worse"

• Miche...
• Taken for less than 1 month
• November 9, 2021

Arava (leflunomide) "I had taken medication for approximately 10 days. A week into it I experienced severe weakness, high blood pressure, dizziness, and numbness/tingling to the right side of my face. After a few hours it passed. Then 5 days later my BP was stroke high, I couldn't walk, and my head felt like it was going to pop. I was hospitalized for symptoms. They said it's just a migraine! Not!!! Finally the Doctor listened and gave me medication to get it out of my system."

• Lisa
• Taken for 1 to 6 months
• June 29, 2018

"I took this medication for just under 3 months. It seemed to helped a little the first month but not much. I had some serious side effects and went off the medication: Short of breath when going up a flight of stairs to the point I could not talk, high blood pressure (200/100) and needed to go on medications, muscle spasms and weakness to the point I could not stand long enough to load my dishwasher due to back pain/spasms, burning nerve pain in my arms and legs which could paralyze me in pain: especially upon getting up after sitting, easy bruising: had very dark bruises all over but the worst was spontaneously getting a small hematoma on buttocks which caused sciatica and I had to get shots... that happened twice. I went off and noticed a significant difference in a couple of days and the pain and other symptoms subsided but is far from gone."

• Angler
• December 9, 2020

"This not about me but my husband. He is fighting for his life in ICU. He started Leflunomide in July 2020 on a dose of 10mg which was increased to 20mg after a month. At the end of August 2020 he started having violent diarrhoea, we questioned it with his nurses and were told as he'd been ok for the first weeks " It wasn't the drug causing his problems". So GP organised bowel cancer check and colonoscopy which proved negative. Then he started coughing on Nov 9th 2020. Checked for Covid, negative. A&E on 22nd Nov, out with strong antibiotics, then ambulance call at 6 am on 26 Nov, in hospital on oxygen which didn't help. He was transferred to ICU on 1 December and Ventilated on 6th Dec. 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."