Rituximab

[Adiahama]

Dear All,

My 25 year old daughter with SLE has been asked to start rituximab infusion due to the renal team not being happy with the amount of protein in urine and think her current immune suppressants are no longer effective. May I please ask if anyone is on rituximab and any advice?

I attended a webinar from lupus USA last night and the dermatologist mentioned rituximab having a negative effect on persons with discoid lupus, could make skin rash worse. kindly advise.

[Mystik]

Hi

I had the infusion it helped me tremendously but please ask the drs n what might work for me might not for others please try it out

[Adiahama in reply to Mystik]

Hi Mystik,

Thank you very much for letting me know. Very helpful and reassuring.

[triptons in reply to Adiahama]

Rituximab seems to be working for me! I've had two infusions at a 6 month interval. No bad effects and, after the second infusion, I have much more agility and less pain, although weekly NHS "falls clinic" exercises may well have helped. I have had a skin rash but I think that was due to another drug (a profilactic antibiotic). Antihistamine tablets seemed to work on the rash (but only after a while). However, I made the error of stopping those tablets when the itching had finally died down. Big mistake - the rash / itching is back! So, another long wait for the antihistamine to kick in again. By the way, I understand that there should ideally be a 4-5month gap between the infusion and a COVID booster jab

[Adiahama in reply to triptons]

Hi Triptons,

I am more than grateful for this reply. Extremely helpful. Her appointment is tomorrow so we will make sure to discuss the booster jab time with the Doctor. Thank you so much. I hope you start to get better soon with the rash and itching.