Rituximab

[joanneM200]

After the awful problems I had when switched to Azathioprine, which obvs was stopped, today I go for my first Ritubimax infusion. Apparently it takes 6 hours, and a second infusion to be given a fortnight later which will take about 4 hours. Do any of you have any experience of this? What to expect over the next few days? I’ve had bad reactions to hydroxychloroqine in the past as well, was ok with mycophenolate but over the years it had become less effective even at higher doses, hence the recent changes in meds.

Thanks

Jo

[weathervane]

When i had first dose of rituximab i had terrible gastritis and felt like i had flu for following week. I was told to ask for it at the slower rate which takes a bit longer but is easier for me to cope with . It has made a massive difference to me , i hope you have great results as well and no adverse reaction, best wishes xx

[joanneM200 in reply to weathervane]

Well, not too bad, my BP kept dropping very low so they had to keep it going slow, and at one point I developed an itchy red rash so had more antihistamine but it settled. I feel ok now

Rash

[weathervane in reply to joanneM200]

Hi joanne so glad it went well for you. Do take it easy this week and be careful re infection prevention. Lots of hand washing, mask etc . Hope you have a good 2 weeks until your next one xxx

[joanneM200 in reply to weathervane]

Yeah, they told me I might feel very tired for a few days, but so far it’s ok. I’ve not stopped wearing a mask or social distancing , avoiding busy places, hand washing etc because I’m ECV, and although I work in a further ed college, 90% of my time is spent in a large lab/office by myself, so just business as usual for me. Fingers crossed it works for me in the long one x

[weathervane in reply to joanneM200]

I hope you can take a bit of time off work , i was wiped out after it but then everyone feels different afterwards. 🤞🏻🙏🏼🤞🏻🙏🏼🤞🏻For you xxx

[joanneM200]

They are very good, I will if I need to, but feel ok at the minute x

[Harrisgran1]

I took a reaction on my first dose of rituximab now get antihistamine intravenous also , feel tired with this but only downside is the steroids before rituximab I can't sleep the night after my infusion is everyone like this? Good luck Joanne hopefully this keeps this horrible illness at bay xxx

[joanneM200]

Thankyou. I was mostly ok, they started with IV steroid and antihistamine before the Rituximab. A bit of a reaction after about 90 mins, itchy, rash, low BP, but it settled. They couldn’t get the drip up to full rate as every time they tried to speed it up my BP ( which is naturally low) would drop rapidly, so I guess the one in a fortnight will take almost the full 6 hours too. Steroids don’t seem to affect my sleep at all, I’ve had oral pred on and off over the years, but never IV Mp before. Fingers crossed it works x

[Yellow92]

I hope it helps you feel better, I was very worried about side effects the first time I had it, but it went ok, apart from my heart rate going a bit fast and feeling dizzy after the antihistamines. Rituximab helped me feel a lot better and calmed a huge flare which caused me to be in hospital for 4 weeks. Good luck with the next infusion.