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Thanks for explaining. I am also looking into Rituximab, mainly because I read a lot about it in the past weeks and relatives talked to some doctors who use it and it seems to be less risky than I initially thought.
I had some very good improvements on antivirals, but I'm still unable to work or have social activity, so I am looking into further options now and Rituximab seems to be the most promising.
For many, rituximab helps a lot, but don't get 100 % healthy.
But if you continue high-dose antivirals during the Rituximab, one should be able to stop any remaining EBV virus from reinfecting new B-cells and it should be possible to kill EBV entirely. In fact, a few patients have cleared EBV after Rituximab and one study suggests long-term administration of valacyclovir can also lead to EBV vanishing from the body.
I still have no response (yet), after the infusion late may.
I have my next and last infusion for mid-December. I kind of going my own way in this.
If I try Rituximab, I plan to continue antiviral treatment. An Oncologist stated to my sister that it's no problem to take high-dose Valacyclovir while doing Rituximab. In fact many patients need it, because they get herpes virus outbreaks after Ritux.
I read somewhere on PR, a few years ago, that a canadian or US doctor did a informal trial of Ritux + antiviral to clear as much virus as possible. I don't know if the trial was conclusive
OMF was going to conduct a study a few years back with Valcyte & Rituximab but it never occurred due to lack of funding.
I don't know anything about the Canadian study but my understanding was that OMF was going to conduct a study a few years back with Valcyte & Rituximab but it never occurred due to lack of funding. (Hoping someone will correct me if I am wrong on this).
That's probably this trial I heard about.
f this theory is correct, or at least if the hypothesis that EBV does something that causes CFS symptoms is correct, and if reducing the number of EBV-infected cells in the body is responsible for the recovery under Valtrex, then Rituximab may (a) be a short-cut to speed up recovery, and (b) help kill as many EBV-infected B cells as possible, or in fact, in combination with Valtrex even remove EBV entirely from the body.
Rituximab has a very long half-life. An oncologist who often uses it told my sister that after a single infusion, it takes 5 months until it is out of the body and it will take some more months until B-cell counts are back to normal. So if one starts Rituximab, one has to be aware that it will weaken the immune system for several months, and any negative effects it may have may be signficant and lasting.
I read on Wikipedia that the half life of Rituximab is between 30 to 400 hours (varies by dose and length of treatment)
Believe it was OMI, not OMF
But let me add: The potential downside is, if my CFS is not caused by EBV, but by some other virus, then killing the B-cells is counterproductive, because you need them to fight that other virus.
Rituximab has a very long half-life. An oncologist who often uses it told my sister that after a single infusion, it takes 5 months until it is out of the body and it will take some more months until B-cell counts are back to normal.
I read on Wikipedia that the half life of Rituximab is between 30 to 400 hours
That would be significantly less than the Oncologist said. confusing.
My understanding (which again could be wrong!) is that the memory B cells that fight viruses/pathogens are in the plasma (or somewhere untouchable to Rituximab) which is why we do not have to get re-vaccinated for anything after having Ritux and can still fight future pathogens that we encounter.
My understanding (which of course could also be wrong ) is that Rituximab attacks all the B-cells that are in the body at the time of the infusion (and the days thereafter), including memory B-cells, and is also effective at killing most of them, but new B-cells that are produced after the Rituximab effect wears off are the same B-cells as before, i.e. they have the same immunity as before, so you don't need new vaccinations because the new B-cells that are produced after Rituximab are just as effective as the old B-cells were that Rituximab destroyed. (huh, that was complicated, hope I don't confuse everyone).
But that being said, for the time during which Rituximab is active, you don't have the B-cells in your blood (or many fewer of them than you usually would have) and that's also why you are more susceptible to usual infections (common cold, flu etc.) during that time.
So that's my argument: there is an immunosuppressive effect of Rituximab and if it's not EBV and not autoantibodies, but instead it is another virus that causes the CFS, then Rituximab will make you less effective at fighting that virus for some time.
This might explain why some CFS patients got much worse after Rituximab. Maybe their CFS is caused by Coxsackie or some other virus and now they are killing their B-cells with Rituximab and get immunosuppressed and then they are even less able to keep Coxsackie at bay and everything gets worse.