Why no Rituxan board?

Artifishual · Post by **Artifishual** » Thu Sep 25, 2008 4:35 pm

Im not sure I can qualify as being "on" Rituxan, but yeah it is the only drug that I have done outside of prednisone. I recieved four dose's over the course of four months. I think that after awhile I may have to do another round, but it all depends on this stupid illness. Hopefully the FDA will in the near future approve the drug for ms.
I too would love to see a rituxan board on here, but I can't even get a response when I post something in the "sugestion" thread or when I pm Aaron.
Later Bob

robbie · Post by **robbie** » Thu Sep 25, 2008 4:39 pm

I recieved four dose's over the course of four months.

you must have a very understanding doc arti hold on to him.i'm sure u will get your board.

cheerleader · Post by **cheerleader** » Thu Sep 25, 2008 5:47 pm

Artifishual wrote:
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 !!

You truly are a B-lister, Arti, a "B-cell lister"... Really glad to hear rituxan works for you and that Marc is trying it out. We do need a board for it.

Rituxan is different from interferons and copaxone in that it goes after B-cells instead of T-cells. B cells mature in bone marrow, t-cells in the thymus. Probably worth a try for people who don't respond to t-cell therapies.
AC

Loobie · Post by **Loobie** » Fri Sep 26, 2008 2:31 am

My neuro. wants to try me on this before I do HiCy. I would love to have a board started too, to see if I want to go that route. Obviously, with the Tovaxin debacle, I don't seem to respond to T-Cell. However, it doesn't look like the B vs. T was an issue there, it just looks kind of ineffective. At any rate, that's what they're looking into. I can't do Campath because my wash out for Tovaxin for inclusion is going to be a while apparently, so maybe Rituxan it will be. If it works on your big ass, it ought to help me!

Artifishual · Post by **Artifishual** » Fri Sep 26, 2008 5:09 am

I hope you get it Lew, this might be what you need!! It has for sure made a difference in my life. I sometimes shiver at the thought of what would be had I not taken it. My MS had started really fucking me up, sorry for the language, before I had Rituxan.

Grumpster · Post by **Grumpster** » Fri Sep 26, 2008 1:17 pm

Artifishual wrote:I hope you get it Lew, this might be what you need!! It has for sure made a difference in my life. I sometimes shiver at the thought of what would be had I not taken it. My MS had started really fucking me up, sorry for the language, before I had Rituxan.

Wow, I could not have said it better. I am in the F--ed up group right now big time. That is why I have not been posting. I have been too down and out with extreme vertigo and trouble doing much of anything. I finally got a specialist to look at my recent MRI slides probono since my ahole neuro does not know his ass frrom a MS lesion. The specialist looked at them and said -holy crud batman, no wonder you have vertigo, you have new lesions on your brain stem right where your vestibular system communicates with your brain. You also have some on your upper spinal cord in the area responsible for motor coordination and other important things. Well WFT why did my nearo said--no changes, no explaination for your vertigo Grump--. I want to kick his weasle ass so bad.. anyway sorry for the venting. The specialist was also quick to say that I need to do something different ASAP. He blasted my ahole neuro and said I need to change something now!!! Well that brings me to Rituxan. I have a friend who is a pHD immunologist and he has some first hand info on rituxan trials and said that the dramatic benefits he has seen have him convinced that I need to start it. So off to ahole's office I go on Monday armed with a lot of literature and references so he can give me an off label Rx for Rituxan. He does not know it yet, but if he balks I have a lot of documentation on how he has failed to review my files in a timely manner and how he failed to recognize serious problems and changes in my condition and MRI slides and how he has failed me as a patient on so many levels. I have a brief of complaint I am going to file against him with everyone under the sun if he continues to be such a derelict. Ahhh I feel better now. Anywho I will get a new neuro shortly but maybe I can squeeze a Rituxan Rx out of his weasle ass before I dump him. cheers -

Lyon · Post by **Lyon** » Fri Sep 26, 2008 1:22 pm

marcstck · Post by **marcstck** » Fri Sep 26, 2008 9:43 pm

Well, it's one week since my last infusion of Rituxan. I had one infusion on September 5, and another on September 19. I'm told if the drug seems effective we'll repeat the infusions in about six months.

So far, I'm pretty much feeling like crap. Very fatigued, and vaguely "flu-ish". I wasn't expecting to see any positives from the drug this soon, but also was not expecting any negatives. Hoping this is not a harbinger of things to come...

Short of doing something radical, like traveling abroad for stem cell therapy, Rituxan is my last line of defense against the ravages of primary progressive multiple sclerosis. I've tried many other "mainstream" treatments (rebif, intrathecal methotrexate, Tysabri, plasmapheresis, IV Solu-Medrol), along with a handful of alternative therapies (antibiotics, LDN, acupuncture, etc.). None have done anything to slow down this creeping paralysis.

About 5 1/2 years since I first displayed symptoms, my right arm and leg are profoundly weak and spastic. For any kind of ambulation other than dragging myself around the apartment with a cane, I require a power wheelchair. I'm also privy to many of the other treats that MS has to offer, like bladder and bowel dysfunction, and autonomic nervous system disruption. All in all, I've spent the last five years watching myself whither away, as MS has marched through my body like Sherman marching through Georgia...

I'd estimate that in my current rate of progression, I'll be bedridden within 12 months. Given that Rituxan failed its trials for PPMS, this is a last-ditch Hail Mary, brought about by my insurance company finally approving the treatment after four previous denials. This approval came as a surprise to both me and my Dr., who says he seen about 30% of his PPMS patients respond to Rituxan. Sure hope I fall into that demographic...

On other boards, I have come across PPMSers who have done well on Rituxan, and have seen their progression come to a halt. This gives me hope, and hope is a very good thing...

robbie · Post by **robbie** » Sat Sep 27, 2008 6:12 am

I find it amazing that certain drugs or whatever seems to help some but not others right from vitamins to chemo, it’s just amazing. i feel for u marcstck.

Grumpster · Post by **Grumpster** » Tue Sep 30, 2008 2:29 pm

marcstck wrote:
I'd estimate that in my current rate of progression, I'll be bedridden within 12 months. Given that Rituxan failed its trials for PPMS, this is a last-ditch Hail Mary, brought about by my insurance company finally approving the treatment after four previous denials. This approval came as a surprise to both me and my Dr., who says he seen about 30% of his PPMS patients respond to Rituxan. Sure hope I fall into that demographic...

On other boards, I have come across PPMSers who have done well on Rituxan, and have seen their progression come to a halt. This gives me hope, and hope is a very good thing...

Marc, I can only imagine what you are feeling. I hope that you respond well to the Rituxan. My prayers are with you.

I got a complete shut down from my neuro yesterday when I approached him on Rituxan. He is a jerk in the pocket of the HMO I believe. The good news is that I got him to cough up a referral to the Director of the MS Clinic at Scripps Memorial Hospital La Jolla, a MS specialist with 30 years exp. Maybe he will have some idea how to regain some sanity and get some relief from the vertigo / dizzieness.

Best of luck to you Marc....