Rituximab treatment? Just wondering i... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Rituximab treatment? Just wondering if it is worth trying.

Skyllark profile image
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This is Skyllarks wife, I have APS. Just wondering what benifits people have had from the rituximab treatment? Just wondering if it is worth trying.

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Skyllark
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MrsBL profile image
MrsBL

I am wondering the same thing as my Rheumatologist is just about to out this in place for me. I read on here that somebody describes it as a 'life changing treatment'. Any help appreciated please.

fchristal profile image
fchristal

I have APS and several Automimmine diseases. I was in a one year study for Golimumab for severe Ulceratve Colitis. There was some relief from the UC but no help with the APS and I ended up with a bad case pf pneumonia from which two years later I am still very ill with a compromised immune system - I assime all of the biologics (- umabs) work by the same way and may permanantly damage your immune system. In my case, I have never regained any of the strength I had proir to going into that study. Of coused, you may have a ver positive outcome and I wish you the best. For me, it was the worst thing I have ever done.

pamcelis profile image
pamcelis

Ive had treatment of mabthera (rituximab) for 13 months, 2 doses per month....in my case, it helped a little but not as much as my doctor would have liked it. This wasnt as horrible as fchristal says, it didnt repressed my immune system like that and i had no side effects but the weakness the first weak after the treatment. I know of other people that have tried it and did do a great job for them. Since rituximab didnt helped completely for me, after a few months I got a little bit worse...I have been for 2 months under Belimumab treatment. Its way more stronger that rituximab, with strong remaining side effects like nausea, shivers, sometimes im very cold and extremely weak. This treatment does compromises more my immune system. So far im doing ok with that, i do take care a lot of care around sick people, where do i eat and im always covered up to avoid any cold. Since belimumab hasnt been accepted in my country (mexico), i brought it from US and i am the first person here to have this treatment becauseI hadto sign a lot of papersaccepting my full responsibility on the treatment and its effects, for the hospital and the government. I hope all my experience is helpful for you :)

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