Leflunomide and Headaches: What Users Say

• Tri...
• January 14, 2017

Leflunomide for Rheumatoid Arthritis "No way did this drug help me! What it did do was give me MS symptoms! Yes, I went totally blind off and on during the day and had debilitating headaches to where all I did was lay and cry! Warning, the doctor tells me I had MS. I say no, it's the drug! He says no and proceeds to send me to a neurologist. He examines me and says no, it's probably neuropathy! So here I go again being sent to yet another specialist! I was sent to an ophthalmologist, and he says no, your eyes are fine, it has to be MS! I then go back to the rheumatologist for him to say, yes, it's MS, don't stop the drug! I went out on my own gut and stopped the Arava and WHAT DO YOU KNOW--- MS SYMPTOMS DISAPPEARED ALMOST INSTANTLY! So please be aware these drugs will do more harm than good."

• Reg...
• Taken for 1 to 2 years
• March 1, 2020

For Rheumatoid Arthritis "I took Leflunomide for just over a year. It helped my symptoms, but in the last month, it severely suppressed my bone marrow, and my hemoglobin and white blood cells have plummeted to the point of being a few points away from needing a blood transfusion. My hemoglobins have not come back yet after stopping it (and doing the washout period with cholestyramine) 9 days ago, in fact, it continues to go down. I am at 7g now and can’t work my corporate job anymore. I’m so exhausted with headaches and just hoping my bone marrow starts making the blood cells again and remembers the natural process and that taking this didn’t cause my body to forget and permanently leave me in this state. Any drug that has the potential to do that, please seriously decide whether to take it or not. I 100% regret it."

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

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

• 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."

• cla...
• October 9, 2019

For Rheumatoid Arthritis "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 badly, 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!!!"

• 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!"

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

For Rheumatoid Arthritis "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."

• DrD...
• March 23, 2016

For Rheumatoid Arthritis "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!!!"

• 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!"

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

For Rheumatoid Arthritis "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."

• Nea...
• Taken for less than 1 month
• March 5, 2022

For Rheumatoid Arthritis "Diagnosed with RA in Sept of 2021 after ultrasounds of hands and feet, as blood work had not shown RA. Took prednisone with methotrexate for a month. Taken off due to feet and ankle swelling. Took either acetaminophen or ibuprofen for continuing pain and trouble sleeping. Taking 10 mg of leflunomide once daily for the past week but no relief yet. Hands and feet throbbing and burning. Experiencing nausea and headache in the mornings. Assume it’s side effects but going to try to continue until the next rheumatologist appointment in 2 weeks. Worried about possible increase in blood pressure, poor liver function, and hair loss. I take 20 mg (recently upped from 10 mg) lisinopril for moderate high blood pressure. Diagnosed with morphia since I was 12 years old, fibromyalgia at 33, and RA at 69. At 70 now and wondering if I should go to Johns Hopkins for a complete workup. I am surprised and worried that this drug stays in your system so long and often needs another drug to remove from the system."

• Anonymous
• June 22, 2016

For Rheumatoid Arthritis "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."

• 03m...
• April 20, 2017

For Rheumatoid Arthritis "After taking Leflunomide for 5 weeks, I broke out with a skin rash under my arms and around my waist, stomach, and my arms. My doctor advised me to discontinue the meds. I see him today to see what I do next. I took prednisone the first 4 weeks with it and had no problems. I also woke up in the mornings with a slight headache that went away shortly after getting up."

• Moh...
• Taken for less than 1 month
• September 5, 2020

Leflunomide "I have been taking Arava for one week for psoriatic arthritis, and I have suffered from headache and high blood pressure within a week."