Rituximab

Hi everyone. Haven't posted on here for a while. Found releif from symptoms for about 8 months taking mycophenolate. Reduced steroids down to 5mg and was feeling pretty good.

Started having bad side effects from the myco, fungal infection in my esophagus which turned into esophagitis, would clear up when giving the myco a break but as soon as I took it again it returned and was pretty awful.

I have been offered rituximab which is great but I am absolutely petrified after reading the side effects!

Lupus symptoms are returning and in pretty much back to square one.

What's everyone's experiences with it? Good and bad...

Done a search on here but they seem to be years old responses.

Thank you

Jo

13 Replies

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  • Oh Jo, so sorry you and myco didn't get along. Good luck with the infusions. I haven't had them, so I'm interested to see how they work for you, let us know in due course.

  • Hi Purpletop. Thank you so much.

    will do.

    Jo xx

  • Am sure you'll get some good replies (I've no experience of rituximab). Just want to say: am so glad you've let us know how it's going, but am vvv sorry myco brought on these bad probs...vvvvv much hope rituximab does better for you xo

  • Thank you so much Barnclown. :)

    Hope you are ok

    Jo x

  • Hi Joanne, I had two infusions of Rituximab in August, September it took a few weeks but I am now on week 6 of feeling pretty good, there is quite a lot of information as regards the nasty side effects however I have had absolutely no issues, go for it!

  • Hi vitalspark. Thank you for your reply. So pleased you have found benefit and you have had no side effects.

    Sometimes reading all the side effects doesn't help atall.

    Thank you :)

    Jo

  • Hi vitalspark. Thank you for your reply. So pleased you have found benefit and you have had no side effects.

    Sometimes reading all the side effects doesn't help atall.

    Thank you :)

    Jo

  • Both of these drugs are in my future in case treatment I am on doesn't work. It is good to read these comments. Hope you get relief.

  • Thank you. Mycophenolate worked so well for me for months then came the side effects.

    Jo

  • Hi Jo

    So sorry you had bad problems with the Myco, I was lucky with my fungal infection clearing up quickly. Good luck with Retuximab, hope it works well for you. Look forward to hearing how you get onX

  • I had two infusions in July, had no side effects, been 16 weeks since first infusion and I have not had any real joint pain since August so feel it has worked, still tired a lot but think that is more down to overdoing it at work ! Also feel like my head is a lot clearer not as much brain fog. So seems to have had a positive impact for me , good luck

  • Just to add in also on 5mg Steriods, 100mg Azathioprine and 200mg hydrochroquine

  • Thank you for your reply butterflywings. That's so positive to hear. Glad it is helping you.

    Jo

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