Is there anyone else on Rituximab??

I have ra, lupus, raynauds, sjogrens and underactive thyroid. After several years of trying different treatments, painkillers etc I got funding for an infusion of Rituximab. Although this has made a vast improvement to many symptoms(unfortunately not pain in already damaged joints) As it brings your immune system down I have had every bug,cold, cough & infection<all of which put me to bed for several days.

My question is...... do I get a second dose or not??.....its such a catch 22 situation.

Advice please, lovely lupies xx

5 Replies

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  • Hi Wendic - I was on it for several years. Had problems getting the stuff into me (always ended up having to stay in hospital overnight) but found it helped me. I would give it a second go..... It could be that you had a phase of getting all the coughs and colds anyway. I have lupus, rp, lung disease, asthma etc and needed a boost. I've been on Microphenolate for several years now with pretty good results. Good luck whatever you decide. D xx

  • thanks, I will have agood chat with my rheumy nurse. x

  • Wow we sound like to peas in a pod! I have all what you have listed!

    If you are willing would you text me so we can remain friends as I'd love to be able to text and ask questions about how you cope on a daily basis

    Sammy x

  • I have exactly the same conditions as you Wendic and also Snm24771!! I had my first Rituximab infusion Sept/Oct last year and due to have 2nd does March/April this year. Hopeful 2nd lot will help as first lot didn't seem to make any difference. Haven't really had any bugs over the winter, so been lucky there - although right now my mouth, throat and gums are red raw maybe because I'm reducing steroids again. Jane xx

  • all I can say is poor you Sammy-lol! will txt you x

    Jane, I always thought the sore mouth was to do with my methotrexate as always cleared up when off it? Have been on 5mg pred for about a year now, have tried to go down to 2.5 but feel dreadful almost immediately.

    I am due to have my 2nd dose at the same time so we can compare notes!

    Wendi x

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