Rituximab

[Guest guest]

What is it? I've never heard of it.

:0)

Pattie

Rituximab

Have any of you ever heard of using Rituximab as a

therapy for b-lymphocyte irregularity?

Sandy Moose

Adam's Mom

__________________________________________________

[Guest guest]

Hi Group,

Has anyone tried Rituximab? Has it worked for you or for someone that you know

very well? I have a close friend, who has had CFS for well over 20 years, who

is very interested in it. CFS or the susceptibility to it seem to run in his

family, as his mother probably had CFS and died of complications of diabetes,

but his older sister has it too, although it has not been officially diagnosed

by doctors. My friend has a Ph.D. in material science but as a young man he

wanted to me a doctor, so he reads about CFS as much as he can. He says that

scientifically the method makes sense. To me this seem like a hypothesis that

yet has to be proven in the real world with real patients, whose bodies may not

react the way that the hypothesis seems to work.

What I have read so far about this drug is that it destroys all the B cells in

our body and the immune system has to rebuild itself back up. I have heard that

70% of patients in Norway improve on this drug, but 30% do not improve. My

question is this: What if some of us patients take this drug and we indeed

destroy our immune system and allow it to be rebuild. What are the chances that

our immune system will rebuild itself in a healthy way? What if what is rebuilt

is actually worse or the same as the old immune system? Are people going to go

through hell without an immune system right after the treatments and then come

out worse or the same after the period of rebuilding is over? If there is

success and the immune system is rebuild in the right way, what are the chances

that it stays healthy and does not fall back into CFS at some point in the

future?

Please write back soon!

Mira

[Guest guest]

>>>>Has anyone tried Rituximab?

>

my primary care doc was kind enough to contact a few rheumatologists in the

area (San Francisco) that she knows well and forwarded them a copy of the

Norwegian study. None of them were willing to try it on me outside the

confines of a controlled study because of the severe side effects, but they

were very intrigued and hopefully will keep this in the back of their

minds I'd be surprised if any doc in the US would be willing to try it

without a lot more studies.

Anyone know if follow-ups on the Norwegian study have been published??

Judith

[Guest guest]

{Moderator:

http://bikechick06.blogspot.com/

}

Somebody is blogging about their rituxamab treatment, Bikechick06blogspot

Sent from my iPhone

On 29 May 2012, at 20:08, Mira Ghoshal <mirasghoshal@...> wrote:

>

> Hi Group,

>

> Has anyone tried Rituximab? Has it worked for you or for someone that you know

very well? I have a close friend, who has had CFS for well over 20 years, who is

very interested in it. CFS or the susceptibility to it seem to run in his

family, as his mother probably had CFS and died of complications of diabetes,

but his older sister has it too, although it has not been officially diagnosed

by doctors. My friend has a Ph.D. in material science but as a young man he

wanted to me a doctor, so he reads about CFS as much as he can. He says that

scientifically the method makes sense. To me this seem like a hypothesis that

yet has to be proven in the real world with real patients, whose bodies may not

react the way that the hypothesis seems to work.