Rituximab and Fatigue: What Users Say

• Cin...
• May 22, 2020

For Rheumatoid Arthritis "I’ve had RA since approximately 1986. Been on Riduara, Minocycline, and Methotrexate (which I absolutely hated!). In 2000, I started infusions. Remicade for 14 years and then just stopped working. Tried Orencia for three months - never worked. Rheumatologist put me on Actrema - some success for about 18 months and then it quit working altogether. In 2016, my Rheumatologist put me on Rituxan. I’m on a 16-week/2-week cycle. It’s been great. I sometimes have trouble sleeping the night of my infusion (due to Solumedrol I have to take with it) and then really fatigued for a couple of days after - but I’ll take it. My joints seldom hurt, never swell - I generally feel fine. As with any biologic - I have to be careful not to catch anything (even a simple cold can knock me on my butt) - but I’ve been dealing with that issue for many years. Overall - I’m happy with the results."

• She...
• Taken for 2 to 5 years
• October 22, 2016

For Rheumatoid Arthritis "This will probably only be relevant in the UK. Insurance not relevant. I have been on rituximab for over three years, I find it works very well with negligible side effects. I've had treatments twice a year, but on asking for my next treatment, I was told that because of new funding rules, I can't have it unless I am on methotrexate too. I took oral MTX for 10 years until I developed liver enzymes in blood and severe fatigue. I was offered self-administered injections, which 'have fewer side effects.' But I became very unwell with each successive jab. I had to stop them. I am now not on any anti-TNF drugs, and my health is failing rapidly. My GP is very helpful and is trying to sort this out. Why no provision for people who react badly to MTX?"

• 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."

• Eey...
• July 8, 2016

For Rheumatoid Arthritis "I was diagnosed with RA in 1998 and have been on most of the drugs available. Enbrel worked great for 6 years, then it just stopped. Since then, nothing has worked. I had my first infusion of Rituxan 3 weeks ago, and we had to stop the infusion due to itching in the ears and throat, pushed more steroids, and waited about an hour before restarting with a slower and diluted drip. Had the 2nd infusion last week with no reaction during the infusion. I take methotrexate by injection as well and have noticed no new side effects. Just fatigued for 4/5 days after infusions and always the day after methotrexate. The doctor said to give it 3 to 6 months to begin working. So I will wait with lots of hope!"

• Mar...
• Taken for 5 to 10 years
• September 3, 2019

For Rheumatoid Arthritis "Rituxan was prescribed for my RA about 8-10 years ago and allowed me to continue working full time, putting the max away for retirement. Some fatigue occasionally, but no joint pain. After retirement, the combination of allergy to a new huge Maine Coon cat causing chronic congestion and the suppression of my autoimmune system by years of Rituxan led to repeated chest, ear, and sinus infections. After many tests, allergy shots, and several consultations with specialists, the Rituxan was discontinued. Now (2 years later) no more infections, but the RA is up and raging again. New hand and finger damage, as well as bunions and flares on toes that had never occurred before. My doctor is waiting for a fifth Simponi infusion in 2-3 weeks before moving on to another drug. Simponi has done nothing. What is there for me to take at this point?"

• Jim...
• September 2, 2017

For Non-Hodgkin's Lymphoma "I started this treatment for Chronic Fatigue Syndrome. However, since my first treatment, my fatigue has become debilitating. I don't have enough energy to do any of the things I normally do. I had 4 treatments in May, then 4 more infusions in August. The fatigue lingers like a fog that will not lift. My sleep pattern has changed. I wake up 3 to 5 hours after going to sleep feeling wide awake. I cannot stay in bed, though I am still sleepy. I have dreams that are so realistic that I participate in them or act them out. My attention span is shot. I can't concentrate on what I am trying to do and end up jumping from one thing to another."

• GPA...
• Taken for 6 months to 1 year
• August 25, 2024

For Granulomatosis with Polyangiitis "Just about to receive my second round of the infusion. First one went well with no sudden side effects. Long-term side effects are for me - fatigue and blurred vision. Blurred vision has been helped with eye drops as my own tears seem to have changed since I started on rituximab. Fatigue is something that bothers me as I have always been very active. Hopefully, there is a way to negate that. Will see with the next appointment with the doctor."

• Dan...
• July 19, 2015

For Pemphigus "The course of treatment was 1000 mg two weeks apart, and one 1000 mg dose six months after. The first wave of treatment brought the pemphigus to only two isolated areas (this is after 7 years of constant open wounds). The side effects were standard: extreme exhaustion and a sense of malaise. Utilizing a cannabis (eaten) treatment to counteract the nausea, it also alleviated the nervous reactions to stressful stimuli (not a normal user of such). The final treatment was completed in mid-June 2015, the side effects have been considerably less, only one day so far of dizziness and nervous reaction. This was treated with 1/8 g of cannabis eaten with white rice. Overall, being forewarned is very helpful to keep side effects in perspective."