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{ 8 comments… read them below or add one }

Shewolfdc June 19, 2012 at 6:17 pm

I cannot stress enough the importance of knowing what you are getting into with Rituxan. If I had read all of this without trying the drug, I would be excited too. But I was on Rituxan for several years. Not only did it stop working after several treatments, I was left with what appears to be permanent cognitive problems. Oh yeah, I was better for a while, but then it quit working sooner and sooner between treatments. I began having severe reactions during the treatments and then finally it didn’t work at all. So not only was I back to being almost bedridden, I was worse off than before because of the cognitive damage. Don’t jump into Rituxan because of the hype. I know how badly you want to get better. So did I, but I really regret it. What helped my was Famvir, the antiviral, taken for more than a year. I got significantly worse when I first started it but got better and better gradually after that. I still have to watch it, but I lead a fairly normal life now. No great exercising but I can work all day and do chores or other things afterward. I am very grateful for that level of existence. Please exhaust less dangerous treatments before trying Rituxan. Speaking of dangerous drugs, Methotrexate, mentioned in some studies, did work well for me. It’s a dangerous drug but I personally had no I’ll effects from it. I went off it after the Famvir worked it’s magic.

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Cort June 20, 2012 at 10:46 am

Thank. We must remember that ME/CFS is a very diverse disorder…that might be our mantra in fact when thinking about treatments. The declining effect you had with Rituximab is really interesting. Fluge and Mella have said they’ve been able to maintain improvement but I don’t know if anyone’s been on it as long as you have. (I guess in retrospect Svein and Anne must have).

I know someone else who did very poorly on Rituximab and then did well with antivirals. A key factor will be learning who’s going to do well and who’s not on the drug. Hopefully Fluge and Mella will be able to tease some of that data out of their pathogenesis study.

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Shewolfdc June 20, 2012 at 3:56 pm

I want to be clear about the side effects: they are not just a ME/CFS issue. Cancer patients on Rituxan have reported it as well. Rituxan is chemotherapy.

Sherlock June 25, 2012 at 5:53 pm

Rituximab binds to CD20 on B-cells, but not all B-cells express CD20. Therefore some patients are suitable candidates for anti-CD20 drugs, and some aren’t. But even in those who find the drug to be effective originally, use of rituximab can deplete the CD20 subset of the B-cells, which means they eventually become refractory to rituximab. The CD20- B-cells that remain could still be causing the problems in CFS.

IIRC, rituximab will eventually stop working in just about everybody. The speed at which that happens will be reduced by having it less frequently.

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Shewolfdc June 20, 2012 at 4:47 pm

Let me change that, Rituxan is not chemotherapy. It is given to people with some forms of cancer. Big difference. Sorry about the error

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Sherlock June 25, 2012 at 5:41 pm

Some refer to rituximab as chemotherapy, but I’d say that ‘biotherapy’ is a better term. For most it is very mild in terms of side effects, and severe adverse effects are rare. Sorry that it went badly for you. Since it is a chimera (with part of the antibody molecule being of rodent origin and the other part being human), I’d wonder if you might have any allergy to mice, etc.

Rituximab actually comes from Chinese hamsters :)

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Shewolfdc June 26, 2012 at 3:49 am

That’s so interesting. So it will stop working for everyone. And why are the hamsters Chinese? As in a breed called Chinese hamsters or do the hamsters come from china

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julie homer September 21, 2014 at 8:13 am

thank you shewolfdc for your comments on this as a M.E sufferer i was hoping that this looked like a break through for us sufferers,now im not so sure i certainly wont be putting my name forward for this one.
i understand what works for one doesnt for another ,but if this is not a cure ,which as they have not said what caused this ,i dont see how they can find ” a cure ”
i will not be a guinea pig for this one , i certainly would want to know more about the side effects and downside of this before trying ,
if this works for others then fair enough ,but atm im not 100% sure with them on this one

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