Lupus, cancer and Rituximab

[Pipido36]

Hello everyone

I have been struggling with pain for sometime now. The Rheumatologist and Heamatologist have decided that I have to start having Rituximab infusion. I want to hear from anyone who is on Rituximab and tell me what the side effects are and how they cope with taking the treatment. Besides Lupus SLE I also have Extranodal Marginal Zone Lymphoma, Myeloma and AL Amyloidosis. Any information will be helpful. I am scared to start the treatment as I am always getting infections every now and again. Thank you. Xx

[Petrof]

Good morning, I have non active lupus and last year I also had a treatment for marginal B cell lymphoma. The cancer was treated with chemo plus 6 infusions of Rituximub monthly. I had absolutely no side effects from it.

[Pipido36 in reply to Petrof]

Thank you so much for the information. I also have non active Lupus but the all over pain is horrible. I hope i won't have any side effects or just minimal. Take care

[Sunshine634]

Hello

I am on Rutuximab I felt a bit rubbish for a few days after the first infusion and unfortunately caught covid after the second. After my last infusions I also ended up a bit rough for a few days with raised temperatures but all very much worth it with the results, joint pain reduced, energy levels increased, last year I was completely symptom free for around 6-7 months

This year I've not been as responsive to the treatment I'm nearly at the 3 month mark post infusion and still experiencing flares but they are getting there and I am hopeful.

I have lupus and RA, I'm sorry to hear you have so much going on, I hope rutuximab works for you and that you get some relief soon xx

[Pipido36 in reply to Sunshine634]

Hello

Thank you for the reply. I will go ahead and give it a try. I hope you will get better soon. It gets complicated if you have a lot going on but I hope Rituximab will work for me. Thank you again. Take care xx

[Yellow92]

Hi, I've been having Rituximab infusions since 2020, every six months as my symptoms have been quite severe. Luckily no strong side effects from the infusions. After the infusion I struggle to sleep due to the steroids that I'm given as part of the pre meds, and I feel quite tired for a couple of days, but otherwise it has kept my lupus at bay since a really bad flare in 2020 where the lupus began to effect my kidneys, lungs and heart. Once it kicks in, I feel I have more energy, less joint pain and less chest pain. Of course I get flares where I feel fatigued, achy, in pain and just generally bleh... But nothing like in the past when I was in hospital for over a month with organ involvement and excruciating chest pains. This treatment has really worked for me.

Good luck with your treatment and I hope you see a great improvement in your symptoms.

[Pipido36 in reply to Yellow92]

Thank you for sharing the information. With lupus has affected both lungs with more than 8 nodules, hence the lymphoma and amyloidosis. I hope it will work on me.

[Lizard28]

hi, I have lupus and about five years ago I had extra nodal marginal zone lymphoma, I had “B” symptoms as well but had to have R-CVP for 6 months. I coped well on it, Retuximab on its own will be very manageable, it was the other cocktail of drugs that were harder. Mine came back after a month of finishing treatment, I am now in watch and wait, they won’t do treatment till it gets bad again. I’ve not had B symptoms yet so all is good. I will know if I get worse. Bloods get checked every six months. Best wishes xx

[Pipido36 in reply to Lizard28]

Hello

Thank you for the information. Lets hope you wont get bad again. As for myself they could not give me any other chemotherapy treatment as it was risky due to other conditions i have.. Due to the inflammation markers which keep creeping up they decided to put me on Rituximab and get just one infusion to see if my body will cope with it. I hope you stay stable for a long time. This illness is draining. Take care. xxx