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Rituximab Phase III - Negative result

Learner1

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@Gingergrrl I wouldn't pretend to know anything about dosing!! I've left that to my doctor. But, the second opinion from the immunologist who specializes in autoimmunity co-occurring with immunodeficiency named the exact same dose abd protocol as my main doctor.

And, just to be clear, my main diagnosis is ME/CFS. I was diagnosed by a top specialist, fit the criteria, and my labs match many of the findings of the researchers.

I do suspect that most ME/CFS patients have other, treatable diagnoses, should their doctors care to look, whether it's Hashimotos, chronic EBV or other infection, CCI, nutrient deficiencies, some other weird autoummunity, mitochondrial dysfunction or something else entirely, and even more likely, with multiple of these together. Getting adequately tested so these problems can be treated is critical.
 

Gingergrrl

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@Gingergrrl I wouldn't pretend to know anything about dosing!! I've left that to my doctor. But, the second opinion from the immunologist who specializes in autoimmunity co-occurring with immunodeficiency named the exact same dose abd protocol as my main doctor.
I wanted to clarify that I wasn't questioning your Rituximab dosage (and wasn't questioning my own either) and I also had three doctors agree that my dose was correct for me using the BSA (body surface area) formula.

I am questioning the discrepancy in dosing between Fluge & Mella's 2015 and 2019 studies. Everyone got Rituximab per the BSA formula in the first study but then in the second study, they only used the BSA formula for the first two doses and then switched all subjects in the 2019 study to a standard dose of 500 mg. For some people, 500 mg would be adequate but my own dose is 600 mg (and I am not a large person) so I know that 500 mg was not adequate for some of the subjects.

I also cannot think of a clinical reason to change the dosing unless it was simply b/c of the cost/ financial reasons. I wish that Fluge & Mella could explain why they did this and this will continue to niggle at me until they do. And it still may have turned out that Ritux was not an effective treatment but since they changed the dosing, that factor can never be eliminated.

I do suspect that most ME/CFS patients have other, treatable diagnoses, should their doctors care to look, whether it's Hashimotos, chronic EBV or other infection, CCI, nutrient deficiencies, some other weird autoummunity, mitochondrial dysfunction or something else entirely, and even more likely, with multiple of these together. Getting adequately tested so these problems can be treated is critical.
I agree with this as well and I have known hundreds of people through PR since joining in 2014 and I cannot think of anyone with an "ME/CFS" diagnosis who doesn't also have another diagnosis whether it is POTS, MCAS, Hashimoto's, Lyme, CCI, Fibromyalgia, EDS, Sjogrens, Small Fiber Neuropathy, other autoimmunity, other immune deficiency, or even cancer.