The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Sick Constantly since on Rituxan

Discussion in 'Rituximab: News and Research' started by bdonovan, Jun 5, 2018.

  1. bdonovan

    bdonovan

    Messages:
    22
    Likes:
    41
    You can see my thread here on PR when I started Rituxan on Dec 18, 2017.
    Today is June 5, 2018; so it's coming up on 6 months. Very little change to my well-being, strength. Have had 3 infusions.

    However, one big change is I'm sick constantly. I began to get sick mid-March. Cough, yellow mucus, increased fatigue, sneeze, stuffy nose. It started going away by mid April. Then I had infusion 3. Shortly thereafter it came back. May 7'ish I began taking Augmentin antibiotics. It went away by May 24. Now it's back- starting May 30 to now (June 5).

    Prior to rifaximin, and for the last 3 years before it with chronic fatigue, i never got sick. This could be because my immune system was on overdrive (and the reason they thought rituxan would help as it would suppress the overactive immune system). Since taking Ritux, I am now sick constantly. I have to say I am not certain they are related, but it seems awfully coincidental. There have been some changes to my sleep patterns and exposures to water in my apartment, which be a factor. However, I find it a little odd that so far my Dr. at Center for Complex Diseases has seemed to imply that Rituxan would not increase my susceptibility or reduce my body's ability to fight these colds//infections.

    Anyone got any ideas?

    6 months ago was so hopeful Rituxan would turn things around. I realize there's still some time to see if it would work but bummed I'm at where I'm at. The infections and symptoms esp the increased fatigue fighting them off don't help.
     
    alkt likes this.
  2. halcyon

    halcyon Senior Member

    Messages:
    2,361
    Likes:
    5,541
    Are your B lymphocyte and immunoglobulin levels being monitored after each infusion?
     
    bdonovan and alkt like this.
  3. bdonovan

    bdonovan

    Messages:
    22
    Likes:
    41
    A good question; CFCD has me doing regular blood work; but since there's been nothing alarming they've directed to me, I didn't think about it. Will check, thanks. I understand there is an expected reduction from rituxan, right?
     
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,082
    Likes:
    35,335
    USA
    @bdonovan I don't know if this will be helpful so just ignore if it's not. I am also doing Rituximab, and my main doctor is with CFCD, but the local prescriber and infusion center (in my case) is my MCAS doctor so I do not have to travel up north to get the infusions.

    But my doctor at CFCD monitors my B-cells with the lymphocyte subset panel (with the goal that they stay at zero which they have been). In the beginning we monitored everything very frequently but since everything was normal (which on Ritux means the B-cells are at zero), we are now monitoring less frequently.

    I am probably not the best comparison b/c my IgG has never been low and I have been doing high dose IVIG for almost two years (for autoimmunity). I have not gotten a cold, flu, or traditional illness in 5.5 years, even with being on Rituximab, and even while I was exposed to germs/pathogens daily for three months while my mom was in hospital.

    This surprised me greatly but it is either b/c I continue to remain so far skewed to the autoimmune side or b/c the IVIG is protective while doing Rituximab (even though that is not the reason that I am doing it).
     
    bdonovan likes this.
  5. Hubris

    Hubris

    Messages:
    59
    Likes:
    92
    Since ritux is itself an antibody wouldn't autoimmune dose ivig reduce its efficacy?
     
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,082
    Likes:
    35,335
    USA
    I truly do not know enough to answer the question but from my limited knowledge, I don't think that IVIG would reduce the efficacy of Rituximab. I know many patients who have done both (not from Phoenix Rising) and have not heard my doctor (or theirs) say that it was a problem. Ritux is a MAB drug (monoclonal antibody) that just targets the B-cells and has a different mechanism of action than IVIG.
     

See more popular forum discussions.

Share This Page