Rituximab and Pain: What Users Say

• Anonymous
• July 18, 2012

For Rheumatoid Arthritis "I had my first infusion almost 6 weeks ago and the 2nd 15 days later. I had no problems at all during the infusions, which was painless. The day after the infusion, I woke up with the feeling that my hands were burning and tingling badly, that lasted most of the day. After the 2nd infusion, I woke up on and off during the night with my eye burning. I think my mobility has improved a bit, but I hope it improves more over the next couple of weeks. For the last few days, I have had pain in my neck and jaw and feelings of dizziness, hopefully, this will pass. I will update my progress over the next few weeks."

• Cav...
• Taken for less than 1 month
• June 29, 2020

For Rheumatoid Arthritis "I have RA and had my first round of Rituxan on 22 June and going for second dose 8 July. Felt pretty great for the first few days with little side effects, thankfully, as so far I’ve been allergic to pretty much everything. Tried Actemra, Xeljanz, Methotrexate, and prednisone with little to no relief and a lot of allergies. Woke up in a lot of pain today and am glad I found this page. It seems like it will take a while to start working, so I’ll continue to hang in there and be hopeful. Good luck to everyone."

• Tan...
• Taken for less than 1 month
• September 2, 2017

For Rheumatoid Arthritis "I am very grateful this site exists, and a search for information during my first infusion indicated the scratchy throat and ears I was experiencing were reported by other patients. I called my nurse and was given Benadryl/prednisone, and the drip was slowed. The whole infusion from 9 AM-4 PM resulted in some tiredness the day after but no hand or left hip pain. I had been off Orencia for 10 weeks, got a shingles vaccine, and was on MTX self-inject. I had previously been on Humira for 10 years and developed an itchy chest rash. I had a false positive test for lupus and had to discontinue. I work full-time as a speech pathologist and lead an active lifestyle. Thanks again, fellow posters, and your experience reports are vital for patients!"

• Tan...
• Taken for less than 1 month
• September 2, 2017

For Rheumatoid Arthritis "I am very grateful this site exists, and a search for information during my first infusion indicated the scratchy throat and ears I was experiencing were reported by other patients. I called my nurse and was given Benadryl/prednisone, and the drip was slowed. The whole infusion from 9 AM-4 PM resulted in some tiredness the day after but no hand or left hip pain. I had been off Orencia for 10 weeks, got a shingles vaccine, and was on MTX self-inject. I had previously been on Humira for 10 years and developed an itchy chest rash. I had a false positive test for lupus and had to discontinue. I work full-time as a speech pathologist and lead an active lifestyle. Thanks again, fellow posters, and your experience reports are vital for patients!"

• Anx...
• Taken for less than 1 month
• December 23, 2018

For Rheumatoid Arthritis "I just finished my first round of treatments with rituximab. After the first round, my condition seemed to worsen. I dreaded going to bed at night because of the pain I know the night will bring. I could barely walk, lost function of my hands/wrists, couldn’t raise my arms, and my neck movement was limited. After my second round, which was 6 days ago, I’ve seen slight improvements. Pain, swelling, and stiffness have seemed to move to different joints. Still hopeful it will work. I have tried Enbrel, Cimzia, and Xeljanz, which brought relief, just not lasting. I am seriously considering taking a leave of absence from my job to save my job."

• Pin...
• Taken for less than 1 month
• November 28, 2021

For Rheumatoid Arthritis "Had to stop Methotrexate in May because it caused breathlessness, and after many tests, was told it was lung scarring. Was not on any treatment for six months, and my RA was totally unmanageable. I had my first Rituximab infusion two weeks ago, and I am in more pain now than I was before. I’m just hoping that it’s early days and will kick in soon."

• She...
• Taken for 1 to 6 months
• May 25, 2023

Truxima (rituximab) "I was taking Rituxan for several years to suppress my immune system so my body would stop rejecting my lungs. I was switched to Truxima due to the cost of the hospital fee. Truxima does not work as well for me. Two doses four months apart, and I am having so much joint and body pain as well. I hope to go back to Rituxan."

• Sal...
• Taken for 2 to 5 years
• March 19, 2022

"Coming up to 4 years since having 2 infusions of rituximab for lupus SLE. Not had any significant inflammation since. That was until 4 weeks ago when I had my 4th COVID jab. It seems to have come back intermittently since then. Nearly four years seems pretty good, and hoping to get another two infusions soon. It has worked really well for me, even though I am still disabled by the damage done before this wonder drug. I did have some side effects of severe sore eyes and arm pain, which resolved in a few days. I wish this had been available years ago, as the inflammation destroyed my joints. I have lupus SLE. I managed to drop my steroids, but only to 5 mg, as I now have adrenal insufficiency due to long-term steroids. All in all, it has worked well for me and reduced my pain no end. I'm in England and very thankful for the NHS."