Leflunomide for Rheumatoid Arthritis User Reviews (Page 3)

• Lis...
• Taken for 1 to 6 months
• June 29, 2018

"I took this medication for just under 3 months. It seemed to help 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 my 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."

• Fox...
• 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."

• roc...
• Taken for 2 to 5 years
• August 29, 2020

Leflunomide "Have been using Arava and Methotrexate for many years now for RA. I take a folic acid tablet with it, it has been very helpful, and I have had no side effects. I seem to have had a flare-up recently and am not sure if it was from moving and doing a lot of the packing and unpacking. Trying Prednisone now to see if it helps with the pain. If not, my doctor wants to try Xeljanz XR. Not sure I want that, anyone out there with any help?"

• Ang...
• Taken for 1 to 6 months
• December 28, 2020

"Following on from my previous post, I have to report my husband lost his fight for his life. He passed away on 16th Dec 2020. I cannot prove that Leflunomide was the cause, but it certainly contributed to it. Yes, we found out his COPD had gotten worse, but the escalation of his deterioration was alarming, and I can only point to one thing: Leflunomide. I urge all RA sufferers to think and think again before taking it, especially if you have COPD and are taking METHOTREXATE and were or are a smoker. This is a dangerous drug, be very, very cautious."

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

"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."

• Anonymous
• October 11, 2015

"I found that after taking this medication for 12 months, it helped with the arthritis, but unbeknownst to all of us were the silent side effects. My experience was awful. Suddenly, I broke out with skin ulcers that hurt badly and act like burn blisters on your hands and feet."

• Ang...
• December 9, 2020

"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."

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

"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?"

• lin...
• Taken for 10 years or more
• August 13, 2023

"I have been on leflunomide for about 16 years. It has kept me from having crippling side effects as seen in some RA patients. I am getting older (79) and am getting a few issues and just concerned about someone my age taking this drug. It has been wonderful for me as my blood work has always been good with just a few small issues."

• hel...
• Taken for 10 years or more
• December 29, 2023

"I was diagnosed with RA in 2000. Been on a lot of different drugs and combinations. I was on Methotrexate oral for several years and then went to injection from about 2006. After 2 or 3 years on this, I had a reaction where the lining of my lungs became swollen, meaning I had difficulty in breathing. They say it was my body's way of saying I have had enough of that! Then, after trying oral steroids and transfusion, but this did not work very well. Then, about 10 years ago, I was put on Leflunomide and for the first time, I felt a lot of relief and was able to cope a lot more with the everyday struggles of RA. I also take Hydroxychloroquine, which I have been on for about 20 years, and Celebrex. I think I am just about starting to decline after several years of managing quite well, or maybe I am just going through a bad patch. I will give it a month before I complain. Like all of these drugs, what works for one does not work for another, and a lot of it is trial and error."

• 70k...
• Taken for 1 to 6 months
• April 22, 2017

"I took Leflunomide for 5 weeks, and I have broken out in the most awful rash you could imagine. My forearms are red as fire. I broke out with the rash under my arms, but it has not slowed down. I stopped taking the meds 5 days ago, and the rash on my arms is still terrible. I do not know how long it will take for the medication to get out of my system. I just know this is the most awful rash I have ever had."

• Cen...
• January 14, 2010

"I've been using Leflunomide since July 2007. It took 3 months for it to become effective, but I have been pain-free since then! Wonderful! BUT, I have developed chronic urinary tract infections -- 12 in the last two years. My urologist is exasperated and has about exhausted his bag of tricks; daily Macrodantin (antibiotic) for over a year helped for a few months at a time, but I'm now resistant to that. I only take 10 mg leflunomide and really hate to think of doing without it, but my bladder is important too. I'm going to ask the rheumatologist this week about cutting the dosage in half."

• DrD...
• March 23, 2016

"Started this drug 6 weeks ago. Developed headache within days and a productive cough. 3 days ago, developed vomiting and a severe headache, worse headache I have ever had in all 59 years of my life. Debilitating. Excruciating pain. Went to the ER during the episode. Nobody knew what to do. They told me my doctors didn't call them back! I don't believe that. After giving me Ativan and morphine with Zofran chaser. CT of head normal and blood work normal, they sent me home. I can't get up without it coming back. I don't know the medication which was working, now I want the massive headache, migraine really, to go away! I won't ever take this drug again! Worse feeling next to MRSA in my bloodstream, while on Remicade therapy back in 2008!!!"

• Jan...
• Taken for 10 years or more
• October 3, 2017

"I have been on Arava 20 mg a day for ten years for my mixed tissue connective disease. I am pain-free! It has made my blood pressure go up a bit, but medicine takes care of that. I also get heartburn from the medicine, but omeprazole takes care of that. All in all, it is an amazing medicine that has given me back my quality of life."

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

"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."

• Kri...
• Taken for 1 to 2 years
• May 26, 2018

Leflunomide "One year on Arava so far. Has greatly improved joint pain. The side effects I have noticed are some skin lesions, thinning eyebrows, migraine headache increase, and elevated liver enzymes. It has given me back movement, which is important for overall health. I will take the side effects compared to ruined joints for now. I did have liver enzymes normal a week after steroid shop for a bad headache. I would think the medication could reduce swelling in the liver."

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

"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."

• dis...
• Taken for 1 to 6 months
• March 11, 2018

"Started Leflunomide on 12/8/17 (and it worked well for my RA). By 1/24/18, I had an intense itchy red rash all over my upper body and extreme dehydration in my mouth, making it almost impossible to talk clearly. I stopped Leflunomide on 1/27/18 and went to a dermatologist. Biopsies on the eruptions (red blotches that gradually turn into peeling skin) showed a form of eczema that was treated with a topical ointment. Today (3/11/18), the rash is still prevalent and now appears on my legs, with newer rashes on my hands and wrists. No idea how long this eczema will last, but it's not pretty and is extremely itchy. Unfortunately, neither my rheumatologist, dermatologist, nor my primary physician can explain the dehydration, so I'm drinking about a gallon of water daily to alleviate the dryness in my mouth. I can see evidence of dehydration on my skin. I need to know how long these symptoms will last."

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

"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

"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

"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."

• Pia...
• December 2, 2015

"This medication has really improved my quality of life one hundred percent. My concern is whether there is a difference in terms of manufacturer. I took Apotex for years, but I guess they discontinued it. I started taking Northstar RK, and I am not responding so well. I am now experiencing back pains."

• And...
• Taken for 1 to 6 months
• September 4, 2020

"I started on Leflunomide 10 mg for two months and did not notice any differences or side effects. My rheumatologist increased my dosage to 20 mg, and I have been experiencing debilitating headaches and high blood pressure (156/100), which I never had before. My doctor said to discontinue this drug, and today is the third day of not taking it, and I still feel terrible. Hopefully, I will feel better soon."

• Mad...
• Taken for 1 to 6 months
• October 9, 2017

"This medicine did nothing to help with Sjogren's syndrome or other connective tissue issues. The major side effect I had was major loss of hair. Had to stop after 3 months due to such significant hair loss and no positive benefit."

• Anonymous
• Taken for less than 1 month
• January 29, 2022

"I took 20 mg of this medication about 6 months ago for 10 days. After a few days of taking it, I developed a very itchy rash on my arms, legs, belly, and back. After that, I stopped taking it, so I don't know if it would have helped with my RA symptoms. I take allergy medicine every day to calm it. The rash has remained and has spread more after I was put on blood pressure medication and began using a steroid cream (2 months ago). It has been slowly diminishing since then. I had a blood test to see if the drug was still present. It's there but in small amounts, .018 mcg/mL, where .020 mcg/mL is considered eliminated. But I can't see how it can be anything else causing the rash because it started right after taking it, is a common side effect, and can remain in the body for a long time. But my rheumatologist, a dermatologist, and an allergist are convinced the leflunomide is not the cause of the rash. I'm convinced it is."