Rituximab

    • Alexa90
      February 11, 2025 at 1:10 pm

      Hey guys! 

      I have a bid question!

      Did anyone of you Rituximab at CIDP?

      I‘m scared of doing Rituximab. I have a low heartbeat, asthma and I didn‘t tolerate IVIG well at maximum speed. I got an aseptic meningitis. Awful!!! My maximum is 60ml/hour and I get Antihistamines and Cortisone before my IVIG because of allergic reactions on my skin. Also I recive the acute therapy because the maintenance therapy is not enough. Also I have GM1 antibodies and now a test for paranodal antibodies has been done. No results yet. If this is positive, my doctor says the only option is Rituximab. The IVIG only helps for the first 1,5 week maximum and the my condition worsens. From march onwards we will be testing 2kg/week once a week. But I have serious concerns about Rituximab. Because I have a low heartbeat, Asthma and 3 children who constantly coming home from school with illness. I don‘t want to go to the doctor all the time because of „little things“.

      Can anyone tell me about their experiences?

    • jk
      February 28, 2025 at 12:20 am

      You may have better luck searching the Forum for Rituxan.

      Good Luck.

    • JD
      March 3, 2025 at 2:29 pm

      Hello.  I received Rituximab twice.  Once for follicular lymphoma in 2013 and for CIDP in late 2016.  I tolerated it very well with no issues.  I believe it really helped me get back to walking again as I was 80% paralyzed and in sad shape with CIDP.  I also had 3-1/2 years IVIG post for maintenance.  I have been off IVIG for 3 years or so now.  I still have polyneuropathy in my lower legs, feet, lower arms, hands and also left side of my face/eyes and tongue,   When I received IVIG I also needed 50mg IV Benadryl and steroids due to a skin eruption.   The Benadryl was for the infusions themself as I would break out in a rash.  The steroids for after as I would get skin sores, so it sound like we have the same issue.  When receiving the infusions I could only tolerate a very slow rate or it would burn in my veins really bad and get very bad headaches.  I hope this helps somewhat.  We are all different and reading through the forums here a person can get a good feel of what others have been through and overall treatments reactions etc.  I wish you the best of luck, John

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