rituximab

[ruablue]

Hello All,

I hope you are all doing ok.

I wondered if anyone has had rituximab infusions for their myositis and what the experience has been like - impact on disease, side effects, infections due to immune suppression, infusion process itself? The rheumatologist has given this as a potential option and I’m seeking some insight.

Thankful for any information

[CLSH]

Hi, for me it was a real turning point. I was struggling to swallow, talk, breathe and was unable to work.

With this treatment every 6 months and rehabilitation I was able to return to work and seeing me now people would not know that I had an immune disease.

I was very careful at the beginning shielding etc… now I live a ‘normal’ life. I work in a secondary school and I don’t think I catch anything anymore than a non immunosuppressed person.

Be prepared to wait, the improvements are gradual and take months.

I hope my experience helps you form your own picture and helps with your decision process.

Good luck!

[ruablue in reply to CLSH]

Thank you so so much - what a wonderful outcome for you - so thrilled the impact it had on you. This has been really helpful / best wishes to you - I’m so grateful for your reply 😊

[SoonToBe]

No major issues here - infusions were smooth and went well (all doses at maximum rate, no complicatios ). Have had no major issues with infections, did have bout of COVID and 1 bad cold in 1 year since started on rituximab. Had skin issues after COVID bout which took several months clear up.

[ruablue in reply to SoonToBe]

Amazing - thank you so much for your reply and for sharing your experience- very appreciative- hope you continue on a positive journey to health

[Legored11]

I had Rituximab every 9-12 months from 2012 -2020. It was a game changer. Previously pumped up on prednisolone, methotrexate just made me nauseous. I couldn't walk up stairs or any activities due to fatigue and muscle weakness. Three months after first infusion I regained most of my strength. Took about another eighteen months until my condition was basically in remission and I wouldn't know I had an auto immune disease.

[ruablue]

thanks so much for your response - what a wonderful outcome for you. Do you mind me asking how long you had been diagnosed when you had the infusions? And did you have any side effects or infections?

[Legored11 in reply to ruablue]

It was about 18 months after diagnosis that I had the first infusion. I think it was a cost issue. Consultant had to request funding as a one off then evidence to support ongoing treatment. No side effects or infections. I'm still on 5mg Prednisolone that the consultant wants me off due to long term effects.

[ruablue in reply to Legored11]

Amazing - thank you so much - you have really put my mind at rest 😊