Leflunomide for Rheumatoid Arthritis User Reviews (Page 3)

• Maggy
• Taken for 1 to 2 years
• September 6, 2018

"I am 66 yrs and was treated Methotrexate 15 mg weekly and folic acid daily, and intermittent steroids but a year later joints started again on this treatment. Doc added Leflunomide 20mg 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 Metrotrexate and Leflunamide 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 leflunamide (continuing methotrexate ) ,and noticed joint symptoms returning in a week. I am satisfied with this treatment and am in remission ."

• Kristi
• Taken for 1 to 2 years
• May 26, 2018

Arava (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, also elevated liver enzymes. It has given me back movement which is important for over all 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 bad headache, I would think the medication could reduce swelling in liver?."

• Angler
• 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 16 th Dec 2020. I cannot prove that Leflunomide was the cause but it certainly contributed to it. Yes we found out his COPD had got 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."

• Anonymous
• December 16, 2021

Arava (leflunomide) "Caused stomach upset, worse the first two weeks and then slowly subsided. It really did help with pain. However, I was only on it about two months and lost substantial amount of hair. As a middle age woman, thinning hair is another issue to deal with as you face all the challenges of ageing, and this was really a disappointment because I’m in question 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."

• rocky
• Taken for 2 to 5 years
• August 29, 2020

Arava (leflunomide) "Have been using Arava and Methotrexate for many years now doe 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 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 ?"

• Diano
• Taken for 6 months to 1 year
• February 8, 2020

"I was taking it for 8 months and I started having a funny feeling in my arms about 4 months in which I reported but Dr did not think it was a concern. Over the next 3 months I started to have more weakness in my arms and then what I would describe as internal internal vibrations. I have just stopped taking the drug and hope the vibration stop before too long."

• Anonymous
• October 11, 2015

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

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

"I took Lefluomide for 5 weeks & I have broken out in the most awful rash you could image. 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."

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

"I have been in Arava 20mg 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."

• DrDMO
• March 23, 2016

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

• linda
• 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."

• Central...
• 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."

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

"This was the worse 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 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 onto Humira."

• disney
• 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."

• Markwr
• 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."

• Aphro...
• 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 be 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"

• Andrea
• Taken for 1 to 6 months
• September 4, 2020

"I started on Leflunomide 10mg for two months and did not notice any differences or side effects. My rheumatologist increased my dosage to 20mg 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."

• Madal...
• 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."

• Piaula
• 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."

• Anonymous
• June 22, 2016

"Stopped the doxycycline because of blue spots on my face and legs,upped the Arava from 10 to 20 mg daily now, am experiencing back pain and stomach pain some headaches also,I think I'll be able to handle all this, nothing left for treatment that insurance will cover, very little arthritis pain"

• Anonymous
• October 4, 2009

"I had high hopes for this medicine, but aside from not helping my inflammation or pain. I'm experiencing itching, red skin, blisters on my tongue and a lot of my hair falling out. Not sure I can stand the itching til my blood work up in November. Here's hoping the side effects will decrease."

• helen
• 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."

• 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 everyday 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, .018mcg/mL, where .020mcg/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."

• Sujemar
• 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."

• mel
• Taken for 1 to 6 months
• February 22, 2023

"My mother has been taking this drug for some time. At first, she had great results and all the pain went away then all of a sudden she suffered from some massive side effects and ended up in a and e. She has lost blood and is now in the intensive care unit. After days of tests, we were told her symptoms are related to this drug. It should be put on the blacklist."