Rituximab Reaction

[Alexia01]

Hello,

I had my first rituximab infusion 3 weeks ago. I had a couple of reactions which they managed to control with steroids and antihistamines, I seemed to react every time the infusion rate went above 12.5 (the lowest). Reactions were mainly rash, itching, redness, headache, high HR and high temp. Managed to finish the first one at 12.5 buy they kept me in and ran in overnight.

The following 2 week I mainly felt like I’d been hit by a bus! Completely exhausted and headachey. Came off the antihistamines a few days after.

The docs agreed I could have the 2nd infusion but said I had to stay on the slowest rate and run it over 24 hours, 4 hours in I reacted again, so they stopped it, and 5 hours after it stopped I had another bigger reaction. I only managed less than 5% of the second infusion and everyone had agreed it’s not the drug for me! A couple of days later after more steroids and antihistamines they discharged me. It’s now been over a week since the second infusion and I’m on daily prednisolone and antihistamines, but I still feel awful! My body feels super weak, I’m getting exhausted so easily and I have ongoing headaches.

Has anyone had a similar experience? Any advice welcome!

Thank you!

[OldTed60]

I’m so sorry that you had this adverse reaction to Rituximab. I had my first round about 5 months ago for Systemic Sclerosis and Sjogren’s rather than Lupus. I was absolutely fine when they were running it first day and compared to other infusions (Iloprost) I get monthly for my Raynaud’s - it was so straightforward.

However I woke up next morning with a swollen itchy face and lips and familiar sensation of being dizzy with allergy. I took extra antihistamine to my usual 10ml of Piriton syrup (I have severe GI dysmotility) and figured out that it was due to the Rituximab protocol of insisting I took it in pill form and it worked too slowly. I only told my rheumatologist later after speaking to a practice pharmacist on phone about another matter. She told me that delayed reactions are often more serious as happen worse and more quickly next time so she suggested I ask my rheumatologist if I could stay overnight for next one 2 weeks later. I organised this through my rheumatologist and it all went entirely fine - running time slow but I needn’t have worried. I’m now waiting until May for next round so I can get my vaccines done first.

I do get terrible migraine and nausea / vomiting when getting my iloprost infusions and I have to take Codeine 30mg 2 hours beforehand with paracetamol and then get IV Cyclizine immediately before they start running my iloprost. If I don’t get both as pre-med then we just have to stop and I go home. Obviously Iloprost and Rituximab are entirely different treatments but I’ve been getting iloprost for nearly five years and have found ways to adapt although it’s still unpleasant and I’m wiped out for days after it. I get it via a portacth now which is much better - also good for the Rituximab. With iloprost I put up with the nasty residual side effects because it’s given me back the use of my fingers. However I had a very serious delayed reaction (Steven’s Johnson Syndrome) to IVIG in 2022 so I do know when I’m beaten and it’s hard to accept. Maybe there are other biologic treatments you can try instead? The necrotising IVIG reaction took about 3-4 weeks to heal up and disappear.

[Alexia01 in reply to OldTed60]

Hi there,

Thanks for taking the time to reply. It was really interesting to read about your experience with the infusions.

I feel like my steroids have kicked in now and am fortunately feeling better. Not sure what the longer term plan with treatment will be yet, but you are right in saying that sometimes you have to put up with some nasty side effects if it helps other elements.

Thanks again xx