reaction to rituximab

[LoveActuall]

At the beginning of January I had my first 2 infusions of rituximab - all went well but for the first 6 weeks there was no change with my RA. Then at the beginning of March my feet, hands, elbows and face were covered with blisters - saw the GP who sent me away saying it was a reaction to the rituximab and the rheumatology team thought it wasn’t, within 2 days they were infected and my feet and hands were swollen. This time the GP prescribed antihistamine and steroids and antibiotics and referred me urgently to Dermatology having sent a photo, saw Rheumatology consultant who did the same. The drugs stabilised it and they slowly started to clear so by the time the urgent dermatology appointment came through they couldn’t do a biopsy. Now my finger and toe nails are lifting and coming off and I’ve been told by the professionals there is nothing I can do to stop this! Has anybody else had this and if so any tips, I’m rubbing in almond oil and covering with plasters? Weirdly the RA seems to be in remission I’m pain free for the first time in over : years but needless to say they won’t give me rituximab again so back to the drawing board!

[3LittleBirds2]

Hi, I was on Rituxumab for 7 great years and I did not have this, Yes, I had some side effect infections that needed antibiotics especially after just having it, but I was prepared to put up with this because of the wonderful effect it had on my severe RA.

I'm sorry to read this, especially as Rituxumab seems to have worked for you, I hope you get it sorted very soon.

[allanah]

I had an anaphylacsis to it at first drip do I can't have it ...lucky for me they treated me immediately and I got onto Tocizilumab which has been life changing. Hope your side effects lessen soon

[Sprite60A]

I had a Rituximab infusion 6 months ago. It has taken a long time to start working though I am fairly pain free at the moment. The one bad side effect which I assume is caused by the infusion is that I have excessively dry skin. I treat it day and night and have done for at least 2 months, I also have a red and dry sort of rash on my shin which is really itchy. I thought at first it was eczema but it’s not. My skin, generally, is so dry that tiny skin coloured spots keep appearing. They go again after about a week. I’ve always had really good skin without any problems so it’s a problem for me. I wonder if very dry skin is a side effect of Rituximab?

I’m so sorry for Love Actuall. It sounds like a small thing but it’s really very miserable. Do hope you get a good improvement soon.

[Seville7]

Hi LoveActuall,

I’ve had my first infusion last week & no I haven’t experienced this. It sounds very uncomfortable ☹️ so sorry for you! I hope your nails will regrow and heal quickly. I would imagine anything that keeps your wounds clean and the skin supple will be of benefit. Perhaps speak to your GP? I do hope you’re ok & that they quickly find an alternative for you 🤗