Rituximab and Headaches: What Users Say

• Son...
• May 11, 2020

Rituximab for Rheumatoid Arthritis "I have rheumatoid arthritis for the last 26 years, tried numerous drugs for it: methotrexate, hydrochloride, gold injections, Enbrel, but had really bad side effects. Then, the consultant put me on Rituximab 10 years ago. I feel much better, have less joint pain. I get itchy skin, especially after a shower, have to take an antihistamine tablet sometimes, headaches, but I cope with all that. It’s worth it. I am thankful for that drug, it really does help."

• Bun...
• September 10, 2016

For Rheumatoid Arthritis "This is my second infusion, and I am feeling quite nauseous and headachy, but I know this will pass. Had an extremely bad headache last night, but the relief from the pain has been incredible. Have been on Enbrel, Cimzia, sulfasalazine, Plaquenil, Arava. I am still on prednisone and methotrexate, as well as Celebrex, but the relief I have had since having my first infusion is like a dream come true. I had results within the first few days, so there is hope out there... I can walk a lot easier, can actually use my hands, which was just so painful... My life is back... Don't give up."

• Bun...
• September 10, 2016

For Rheumatoid Arthritis "This is my second infusion, and I am feeling quite nauseous and headachy, but I know this will pass. Had an extremely bad headache last night, but the relief from the pain has been incredible. Have been on Enbrel, Cimzia, sulfasalazine, Plaquenil, Arava. I am still on prednisone and methotrexate, as well as Celebrex, but the relief I have had since having my first infusion is like a dream come true. I had results within the first few days, so there is hope out there... I can walk a lot easier, can actually use my hands, which was just so painful... My life is back... Don't give up."

• Stu...
• Taken for 2 to 5 years
• September 7, 2016

For Rheumatoid Arthritis "I'm in the UK, so the questions regarding insurance and costs do not apply. Following DMARD and latterly anti-TNF treatment's loss of efficacy, rituximab was prescribed. After the first course, it took four months to work, but when it did, I felt day and night different! My flares returned within four months, and a second course was given eight months after the first. Rheumy established that my disease activity was such that I needed six-month interval treatments, and I have just completed my fourth treatment. Side effects: nothing during, but almost immediately post-infusion, I'm wiped out (heavy!), restless, and get a headache. Goes within three days or so. Rituximab works perfectly for me - no flares now the treatment is regular."

• She...
• April 19, 2016

For Rheumatoid Arthritis "I am waiting to get final approval for this drug. I spoke to a lady who has been on it for 4 years, and she said that it takes a few days to get over an infusion, but it's just a headache and tiredness. She says this drug has given her life back, so a small price to pay. Can't wait to get this drug!"

• Hea...
• May 19, 2016

For Rheumatoid Arthritis "Yesterday - 5th course Rituximab infusions. 2016, last 18 months ago, I thought I was in remission. Despite a complete removal of processed foods and a very healthy diet and exercise 'plan' (self-motivated), I had a big flare-up. I have refused Methotrexate for 2.5 years, having tried for 3 years. I'm happier and healthier. The first ever infusion was stopped due to an allergic reaction in the throat, mouth, and rash on the face and chest. But Piriton was given, and the infusion continued. Piriton is now given to everyone now (UK Chester), before infusion, and advice to take to combat further reactions: rash, sore throat, etc., for 3 days after. This works. I feel washed out, headache 3-6 days, steroid shakes, lack of sleep, flushes, but no ill effects between courses, 7 months apart."

• Lin...
• January 15, 2016

For Rheumatoid Arthritis "I had my first infusion on 12/21/15 and the second on 12/31/16. To date, I have seen no improvement in pain. The only side effect from the first infusion was a severe headache and tiredness for 2-3 days. I have not been so fortunate with the second. I have no energy or appetite and feel terrible. I am shaky and dizzy, and joint pain is horrible. I was on Remicade and Humira for years without complication. Not sure this is worth it or if it is going to work for me. Still hopeful."

• Jak...
• April 26, 2017

For Rheumatoid Arthritis "Had 1st infusion of rituximab and experienced tingling in and around my mouth, the white of my eyes turned blood red. Later that day, I had palpitations and shortness of breath. The next morning, I had nausea and severe headaches. By lunchtime, I was so cold I was shivering, despite hot water bottles, and going to bed did not get warm until the early hours of the next day, then I started with a temperature. I have rheumatoid arthritis affecting most joints, the joint pain increased further. It's been 3 weeks since my 1st infusion, my gut instinct is not to have the 2nd. I'm still enduring the side effects daily, however, not as severe as at first."

• DRB...
• Taken for 1 to 2 years
• August 24, 2019

"I had this medication rituximab for about one and a half years for multiple sclerosis (MS), and was doing so well. I was actually starting to cycle again after at least 3 years. I never felt better. Unfortunately, they brought out Ocrevus (Ocrelizumab), which is basically a similar drug with a slight difference, and labeled that as specifically for MS patients. So my specialist wanted me to change. My first infusion was a nightmare, and I was ill for three weeks. I am now also one and a half years further along and worse again. No energy whatsoever, cramps, headaches, and memory problems. I want to go back to rituximab."

• Win...
• Taken for 1 to 6 months
• January 22, 2025

"Couldn't take first-line treatment, prednisone due to side effects at 100 mg and 50 mg. Took first course of rituximab weekly over 4 weeks. Had reactions to the IV, so each infusion lasted six hours at a slow rate. Side effects after each infusion were headache, muscle aches and pain, hot flushes 10-15 per day (with and without sweats), tinnitus. Very slow improvement in hemoglobin levels from 8.9 to 10.2 over 4 weeks."

• Anonymous
• Taken for 1 to 6 months
• April 16, 2016

For Rheumatoid Arthritis "After each of my rituxan infusion, I feel nauseated, extremely tired, and have a headache for anywhere from 5 days to a week. Is that normal? Works great for RA, though, so definitely worth it!"

• Anonymous
• Taken for 2 to 5 years
• November 18, 2019

Rituximab "On Rituxan for multiple sclerosis, and it went well. Only side effects were headaches. Brain lesions reduced in size with no new lesions."