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.

[GeorgiaAny]

Hi Adiahama, so sorry to hear your daughter is struggling with such cruel Lupus. I just found your add now so I guess your daughter already took Rituximab. I want to share my experience with Rituximab. From what I read most people are over the moon about the infusion. Unfortunately it did not work for me. Moreover it made me worse.

Simptoms started aggravating one or two weeks after and found myself 5 months after falling off my feet and not being able to get myself up for 5-7 minutes, lots of weakness in my feet and arms, can't even take a spoon to my mouth at times, diziness, clumsiness, blurry vision, double vision, confusion.

But all people are different. Hope it goes well for your daughter. Just make sure your daughter is seen 6 month after the rituximab. My brilliant doctors don't want to see me for 1 year after rituximab although I'm in a really bad shape.

All the best!

[Adiahama in reply to GeorgiaAny]

Hi GeorgiaAny,

Many thanks for taking time to reply to me. I really hope you get better. Please stay strong. A lot of ongoing research so I’m hopeful for a breakthrough soon.

Yes my daughter had hers last Christmas and it has not worked. I feel like it made her swelling and discoid symptoms worse. No improvement on the proteinuria but the Doctor’s that she has are Brilliant and see her very regularly and making adjustments to her medications. It’s just so hard to see her suffer like this but she’s strong and we all have to stay strong for her.

[GeorgiaAny]

I'm sorry to hear it had not worked for your daughter as well. At least she is well taking care of by her doctors and as well your support which means the world for us to have friends and family support. I'm unfortunately alone... Friends don't care, mom doesn't understand, no support from no one. Heading for emergency department as we speak as I really can't take the incompetence of doctors here in London.I'll pray for your daughter, keep showing her love and support and encourage her to go out of the house as much as possible. Indoors are the worse for us makes us depressed.

[Adiahama in reply to GeorgiaAny]

I’m really sorry to hear this GeorgiaAny. Good decision to go to A & E. I hope everything works well for you. I will remember you in my prayers. Take care.

[GeorgiaAny in reply to Adiahama]

Thank you, lots of love and health to your daughter!