Rituximab

[Clarry1234]

I’ve been on altrompobag for over 3 years. I’m currently on the highest dose but it looks like I’ve lost response to it (platelet count 30) so now the talk is which immunosuppressant to put me on. Rituximab has been suggested but the consent/info sheet they gave has freaked me out. The increased risk of cancer and possible death doesn’t fill me with joy.

The other immunosuppressant they mentioned was Mycophenolate. I didn’t realise I couldn’t start the tablet and then get the infusion later on so have been given a 2 week reprieve from decision making whilst the consultant looks at the film to see if I have bone marrow scarring from the avatrompobag to explain the loss of response.

How have people found rituximab, during the infusion and after? Any advice? Will I need to book time off work for recovery or just for the infusion? Am I panicking unduly?

How have people found Mycophenolate? I was told the side effects were GI, so that worries me as my guts have never been the same since the steroids at the beginning of this journey.

Oh this purple roller coaster.

[Kazpig1]

hi I have had Rituximab infusions twice now. A few years apart. ( I had a platelet count of 12 at the time). I had the day off work for the infusion. No ill effects during the infusions or afterwards ( maybe I was lucky). I don’t think you are panicking unduly I think any treatment can cause us concern.