Rituximab Infusion

[jon3120]

Hi ,

I had my first Rituximab infusion on 10th and then again on the 24th March.

I’ve had numerous types of tablets / injections but unfortunately all had failed.

I feel like my lupus & RA is just as bad as ever if not worse.. extreme fatigue, swollen hands, feet elbows just about every joint in my body is in pain. I’ve mouth ulcers which I haven’t had in a while. It feels like a never ending cycle. I’ve also noticed very dry / gritty eyes which seems to be new for me

I felt great for a few days (max a week) after the steroid infusions.. but once that wore off I just felt awful.

Realistically what is a good timeframe to gauge if this has worked? One nurse told me a month another told me 4 months

also on hydroxycloroquine 400mg & daily steroid 5mg

One frustrated girl here 😟

[weathervane]

It can take up to 12 weeks to get benefits of rituximab, its a long wait but it made such a difference to me . I found after the second round of 2 there was even more improvement. I hope you find the rituximab a success, best wishes.

[jon3120 in reply to weathervane]

thank you!

[PositiveT]

Hi. I found a good response after 4-6 weeks. I have had three lots six months apart. My next one is due in June. I had cyclophosphamide (6 rounds) before that. My consultants actions really did safe my life.👏👏🤗

I am allergic to all the "standard" meds methotrexate, Mycophenolate and Hydroxychlorquine. So I am very pleased to find something that works.

It does give some "temporary" side effects swollen hands/joints more than usual and very swollen face. And of course tiredness. But putting that aside this is the only drug that seems to work for me.

I wish you good results from Rituxumab and hope it makes life less painful.

Do keep us posted.

💪🌻