Rituximab

louiseb
louiseb Member Posts: 10
in Living with arthritis

Hi, I’ve been on Rituximab for 8 years - my saviour after all other drugs failed after three years each time.

However, last time, my rheumatologist said it was fine to have the second dose after 13 days, rather than the recommended 14. This time, he wanted me to have it after only 12 days. At our hospital, it’s the junior doctor’s role to book my appt, admit me and do the pre-infusion checks and tests. When he rang me the second time (we had to postpone as I’m due my 4th Covid vaccine), I asked why the recommendation is to wait two weeks. He said my rheumatologist said 14 days is the guideline but that 12 days is fine.

I said I felt I’d rather wait the full 2 weeks. As well as being immunosuppressed, I have no Covid antibodies and also have had a colonised lung infection for nearly two and a half years, which didn’t respond to any meds and meant I had sinus surgery 5 weeks ago (which has made symptoms worse, not better!). I also said that surely if there was no issue with fewer days between, it’s all be given as one infusion, as they wouldn’t use a hospital bed, nursing care and infusion on two separate days if they could do it in just one day.

I’ve looked at Versus Arthritis, NRAS and BSR but can’t find an answer. Any ideas anyone, please? Incidentally, the junior doctor was very understanding of my concern and said of course he could book me in two weeks apart.

Comments

  • chassan
    chassan Member Posts: 4

    Hi Louise,I've just had my first two doses a fortnight apart.I have the second dose 5 days ago and I've felt really unwell ever since.I'm wondering if this is normal as the Rheumatoid nurse said that I might feel tired the next day but otherwise I should be ok.I felt unwell for about 10 days after the first dose too.

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