Has Anyone Tried Rituximab?

[jpjd59]

Has anyone tried Rituximab and, if so, what were side effects/benefits?

My 23 year old daughter has been suffering so much (bedridden) from POTS and the doctors they think (waiting for blood tests results) this was caused by a virus and is now causing her immune system to go haywire.

A doctor has mentioned Rituximab as a possibility (depending what blood tests results say).

Just curious if anyone else has tried this drug?

Pam

[Chaos]

I'm not sure if anyone's tried it yet, but I know Jangle was really interested in trying it and trying to find a doctor who would prescribe it for this condition. If your daughter does try it, would you please keep us posted on how it works for her?

Where is your daughter being treated for her POTS?

Hope the tests give the docs some answers that get her some good treatment options.

[jpjd59]

Chaos:

We have been to so many doctors trying to find answers. We have been to the Mayo in Arizona, UCSF, and Stanford (we live in California). The doctor that mentioned this drug is actually an immunologist/infectious disease specialist that was referred to us.

After we get the lab results I will let you know what the decision is on the next step.

Pam

[Chaos]

Would it happen to be an immunologist at Stanford?

[jangle]

I don't believe you will find patients who have tried Rituximab for POTS. There have been some patients who've done IVIG, with varying levels of success.

However, there was a study about Rituximab working very well for CFS patients, and POTS is known to occur in a significant percentage of CFS patients. It's not unreasonable to suspect that some of the patients

in the CFS study also had POTS and benefited from this drug.

Rituximab is dangerous and you should talk with your doctor about the risks before pursuing such a treatment.

I'm surprised your doctor mentioned it as a potential treatment, it must be doctors are catching up on the research. Autoantibodies are implicated in POTS.

[jpjd59]

Jangle:

Thanks for the info. Yes, I know there are risks to this drug (as well as many other drugs mentioned). If in fact the labs come back in pointing the doctor in that direction, that is a decision that will have to be made. That is why I'm trying to get all the info I can now.

All I know is that my daughter cannot continue living in the state she is in. Let's keep our fingers crossed that the labs will point us in a better direction!!!