Why no Rituxan board?

marcstck · Family Member Joined: Jan 04, 2006 Posts: 81

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...

Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 427

I'll get back to you about this one later!! arti in a hurry

Grumpster · Posted: Wed Sep 24, 2008 3:14 pm Post subject:

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

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

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

Grumpster · Posted: Wed Sep 24, 2008 5:53 pm Post subject:

dang, never thought o dat....thanx

Loobie · Posted: Wed Sep 24, 2008 7:05 pm Post subject:

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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Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 427

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 427

"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 Very Happy

robbie · Posted: Thu Sep 25, 2008 8:16 am Post subject:

Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 427

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.

robbie · Posted: Thu Sep 25, 2008 11:22 am Post subject:

thx arti how much does it cost (rituxan) ? how often have you taken prednisone for your troubles ?
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Artifishual · Family Elder Joined: Mar 10, 2008 Posts: 427

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!!! Very Happy

robbie · Posted: Thu Sep 25, 2008 1:21 pm Post subject:

Lyon · Posted: Thu Sep 25, 2008 3:04 pm Post subject:

After all this time I never knew you were on Rituxan arti.

I'd welcome a Rituxan board. It's always interested me and there is a lot more I'd like to know about it.

I'm not sure if NHE can start a new board or if that's something that Arron has to do.

Bob
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Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.