Why no Rituxan board?

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Why no Rituxan board?

Postby marcstck » Wed Sep 24, 2008 12:08 pm

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...
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Postby Artifishual » Wed Sep 24, 2008 1:13 pm

I'll get back to you about this one later!! arti in a hurry
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Postby Grumpster » Wed Sep 24, 2008 2:14 pm

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
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Postby gwa » Wed Sep 24, 2008 4:42 pm

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
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Postby Grumpster » Wed Sep 24, 2008 4:53 pm

dang, never thought o dat....thanx
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Postby Loobie » Wed Sep 24, 2008 6:05 pm

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.
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Postby Artifishual » Thu Sep 25, 2008 5:57 am

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 !!
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Postby gwa » Thu Sep 25, 2008 7:04 am

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
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Postby Artifishual » Thu Sep 25, 2008 7:15 am

"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 :D
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Postby robbie » Thu Sep 25, 2008 7:16 am

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?
Had ms for over 19 years now.
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Postby Artifishual » Thu Sep 25, 2008 7:44 am

Robbie, what i mean is that my symptoms are better. I have not had a flare up since I had the treatments. No numbness, my fatigue has gotten way better. I can work or fish (preferably fish) all day w/ out just going down. Before when I pushed myself I would wake up the next day and be numb from my waist down and the only solution to this was prednisone. I still take Lyrica for back pain, but even that has gotten better, I only take it once or twice a day versus 3 times a day. Life before Rituxan for me had gotten very bleak. I'm not saying that I'm "cured" by any means, just that the quality of my life has improved 100%. I still have my bad days just not as many. According to my Dr. I am one of many patients that he has w/ RRMS that have seen improvement.
Also I am taking "natural calm" and fish oil and sublingual b12. Which I also think has helped. I hope this information is helpful and not misleading. I think this disease has many faces and every treatment is different for every individual.
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Postby robbie » Thu Sep 25, 2008 10:22 am

thx arti how much does it cost (rituxan) ? how often have you taken prednisone for your troubles ?
Had ms for over 19 years now.
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Postby Artifishual » Thu Sep 25, 2008 10:54 am

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!!! :D
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Postby robbie » Thu Sep 25, 2008 12:21 pm

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.
Had ms for over 19 years now.
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Postby Lyon » Thu Sep 25, 2008 2:04 pm

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Last edited by Lyon on Sun Nov 27, 2011 12:53 pm, edited 1 time in total.
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