Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Is Rituximab effective in gut case of CFS?

Discussion in 'Rituximab: News and Research' started by Ekaterina, Nov 6, 2015.

  1. Ekaterina

    Ekaterina

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    Hi, guys!

    I read some information about Rituximab, but still don't understand for whom it can be effective. My CFS is absolutely related with my dysbiosis, and I'm wondering if Rituximab can be effective in my case? Thank you
     
  2. deleder2k

    deleder2k Senior Member

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    I don't think we know much as of now. We do know that patients that have ME according to the Canadian criteria have benefitted. Earlier studies show that up to 2/3 patients have a moderate or a major response.

    I would guess that quite a few of the patients had IBS.
     
  3. alex3619

    alex3619 Senior Member

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    Yes, this question will be best answered in 2017 after we know what the phase III trial results are, though perhaps we may have to wait even longer for the analysis to be complete.
     
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  4. Folk

    Folk Senior Member

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    I've wondered about that too as I think my problems is similar to yours

    What I remember is that one of the members (@Rebecca2z ) who got most benefits from Rituximab was being fed through tubes and now eats normally (or something like it). Hope she can confirm that.
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I think she still uses a feeding tube actually.. check her thread out :)
     
  6. Thomas

    Thomas Senior Member

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    I've had IBS my whole life before a sudden onset of seemingly progressive ME in Nov 2011. At what point of ME illness (and why) is someone put on a feeding tube? Is it due to gastroparesis, or malabsorption, or being too weak to eat i.e. chew and swallow or any other specific reasons I may not have mentioned?
     
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No one knows of yet.
     
  8. Rebecca2z

    Rebecca2z Paradise, Ca

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    @Folk, @Thomas, @Marky90 - I am still on a feeding tube, The RTX did dramatically improve my appetite. ( so it addressed the autonomic issues of the gut ) I believe the dysmotility I have is from the Ehlers Danlos I have.

    {For those of you that have EDS and @Thomas this will give you some answers to your questions... here is a PDF about gut issues and EDS: http://www.ednf.org/sites/default/files/Collins.pdf }

    I can honestly say the RTX did improve many of my gut issues and I am so very close to being able to get off the feeding tube. This is complicated getting off the darn thing, it is scary because I don't know if I can take in enough food food to survive. Getting on a feeding tube is a nightmare I wouldn't go into here, but requires being in hospital for 2 weeks. So if I get off it and have to get back on it I don't think can go through it again.

    I want to be very sure I can eat enough before I get off it, swallowing is also a problem, but I can make food choices to better address that. The whole feeding tube is really awful - awful getting on it and awful getting off it. The thing just messes with your head !!
     
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