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Just wondering why there is no separate board for Rituxan in the treatment forums?

I just finished my second Rituxan infusion this past Friday, and I'd love to be able to compare notes with other patients receiving this treatment. It's being used more and more frequently off label, and would seem to warrant its own subgroup.

FYI, I'm PPMS, and have failed a myriad of other treatments. I had my first infusion of Rituxan on September 5, followed by another on September 19. I'm hoping that it will at least slow down the beast of progression.

Had serious flulike symptoms for about five days after the first infusion, and just some added fatigue after the second. Now it's just a question of wait and see what happens...

Marc,

I was just wondering the same thing when I saw your post. I was trying to get into the ongoing trial for optical myelitis, but it is now closed. I am going to try to get off label approval from my insurance. My neuro is a dunce a-hole and that may be a problem. For now I will just post Rituxan stuff on the general forum board. Best of luck

If you go to the "Suggestions" forum at the bottom of the forums list, and ask for a Rituxan forum, you will probably get one. There is no reason to start one if no one shows interest.

Easy peasy.

gwa

dang, never thought o dat....thanx

How you doin' Grump?,

I haven't seen you around that much. Are you doing well?, or at least as well as can be expected? I remembered you did a face plant on some concrete not too far back and was curious if you'd recoverd from that. I hope you are A-OK.

gwa wrote:If you go to the "Suggestions" forum at the bottom of the forums list, and ask for a Rituxan forum, you will probably get one. There is no reason to start one if no one shows interest.

Easy peasy.

gwa

Here is my request for a Rituxan board:
Posted: Tue May 06, 2008 8:46 am Post subject: Rtiuxan

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Just a suggestion but how about place on the treatment board for Rituxan? I know there are a few here that are trying Rituxan even though it is not FDA approved. Me for one and I am seeing some great results and would like to know how others are doing. Thanks arti


I know I'm a B lister and all but dang!!!!

Anyway, I did Rituxan and am doing great. The only side effects I had were during the administration of the drug. Scratchy throat and itching scalp. When this happened they simply stopped treatment and gave me a shot of benedryl, waited a few minutes for the reaction to subside and then began the treatment again at a slower rate. After that they gave me a shot before every treatment prior to the start. I have really been doing great !!

Artifishual wrote:

gwa wrote:If you go to the "Suggestions" forum at the bottom of the forums list, and ask for a Rituxan forum, you will probably get one. There is no reason to start one if no one shows interest.

Easy peasy.

gwa

Here is my request for a Rituxan board:
Posted: Tue May 06, 2008 8:46 am Post subject: Rtiuxan

--------------------------------------------------------------------------------

Just a suggestion but how about place on the treatment board for Rituxan? I know there are a few here that are trying Rituxan even though it is not FDA approved. Me for one and I am seeing some great results and would like to know how others are doing. Thanks arti


I know I'm a B lister and all but dang!!!!

Anyway, I did Rituxan and am doing great. The only side effects I had were during the administration of the drug. Scratchy throat and itching scalp. When this happened they simply stopped treatment and gave me a shot of benedryl, waited a few minutes for the reaction to subside and then began the treatment again at a slower rate. After that they gave me a shot before every treatment prior to the start. I have really been doing great !!

Bug them again now that there are more of you on it. What is a "B lister"?

gwa

"B-listers" it's just a joke on another board....people that make stupid posts, we joke and call them b-listers, LOL no big deal

I did Rituxan and am doing great.

when u say this arti what do you mean? what are your symptoms and how are they better?

thx arti how much does it cost (rituxan) ? how often have you taken prednisone for your troubles ?

Rob, I'm not sure $$$ for Rituxan, my Dr. arranged it to were all I paid for was the cost of administration of the drug. As far as the prednisone, I took infusions when I flared and then my Dr. put me on a once a month regimen until I got the Rituxan. I haven't had it in about 7-8 months. That is if my memory is correct.
I was telling Loubie about Rituxan yesterday. My Dr. went through
https://www.genentechaccesssolutions.com/index.jsp if interested you may want to contact them or maybe talk to your Dr. about it.
I am not all the familiar with the process (kinda why we would like a new board for Rituxan). Good luck and hope your doing OK and don't hesitate to ask me any other questions!!!

Dr. put me on a once a month regimen

i am interested in this and the affects. when i asked my neuro yesterday about even pulsing prednisone 3 or 4 times a year she said no. it's hard to feel this way knowing what waits when the prednisone wears off.

.