Finally !!!

A board to discuss the anticipated multiple sclerosis treatment Rituxan.

Postby Lyon » Fri Oct 03, 2008 3:18 pm

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Postby Artifishual » Fri Oct 03, 2008 4:10 pm

Ughhhh, let me rephrase here: When I was in HS I dated this guys daughter. She too was in HS. Now I am married to my wife and she is married to her husband. Her father is 60 years old and I consider him my friend as we both share the same passion for the outdoors, but rarely speak. :?
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Postby Lyon » Fri Oct 03, 2008 5:08 pm

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Postby Loobie » Sat Oct 04, 2008 6:41 am

Hopefully I can contribute some "meat" to this thread. My appt. to discuss going on this with my neuro. is Tuesday. My intention is to learn all I can from him about it and then get me some! Whatever I learn I will pass on. I'm very excited to start something. When I think back over the last two years and realize that while my disease has been the most active and I wasn't doing shit for it, it makes me ill. So I have high hopes for this for me (I guess we all have high hopes for any of it). Now that I'm a week out from my IVSM nightmare I want to get some shit in me to keep me feeling stable. It wasn't a nightmare in that I feel, today, more stable than I have in a long while, but for three of four days after my last IV, I felt like I was just nuts. I was all emotional, and I just hurt all over. This week has been fairly stable in that I actually worked an entire week of full days. I know the steroids don't do anything long term though, and now I need something screwing up the works of my MS. I hope I can get this stuff quick.

Let's see if we can keep all the histrionic (that means drama queen for any Texans that may be perusing this thread, lol :lol: ) people out of this thread. The tovaxin threads have become like political blog comments pages. Nobody really talking about the issue, just a bunch of finger pointing and name calling and people playing "I'm right". I was getting sick of reading them.

Oh, and Shannon, just because you proved that you were both in high school when you were dating, doesn't mean you aren't a pervert!
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Postby Lyon » Sat Oct 04, 2008 7:47 am

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Postby Artifishual » Sat Oct 04, 2008 11:46 am

YES A VERY BIG PERV!!!!!! MY WIFE REMINDS ME DAILY, But truly I pray that you do get this soon, Lew. Now on to the fishing report:

IT sucked......................................... :)

but hey it was better than work. We did catch a few. I think I had 5 trout and 4 reds and my dad had 1 flounder and 4 reds and 2 trout. Not that bad, but have surely done better.


I sure am hungry for some "cookies" LOL


later yall's friend arti :P
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Postby Lyon » Sat Oct 04, 2008 12:01 pm

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Postby marg » Sat Oct 04, 2008 9:34 pm

Hi- I have been a long time lurker- I have had ms for 10 years -I had rituxan earlier this year for my ITP - I feel that it has had a positive effect on my MS -I have a lot more energy and seem to be quite stable since the infusions. My haematologist and neurologist are really interested in the possible benefits that the drug my have on my MS (even though I primarily getting it for my ITP)...
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Postby CureOrBust » Sun Oct 05, 2008 2:18 am

is the dosing regime the same for ITP as it is for MS?

and welcome into the light. :)
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Postby Loobie » Sun Oct 05, 2008 8:24 am

Shannon,

Your cookies are packed and ready to go to UPS Monday. I think you'll really like them, they're our family's secret recipe.

Bob,

You're right about my Dr.. My neuro's office is actually where all the stuff happens. He and his partner are very, very active in MS research. Dayton is a small town (relatively, about 200,000 people), but these guys, Alan Jacobs and Lawrence Goldstick, are always giving speeches and stuff concerning new MS research all over the place. They bought a big office in an old hospital that is now like a medical campus, and they put in an infusion lab for Tysabri and 'roids and the like. Havng a lab and imaging and basically all the services there on site at the 'campus' makes it that much easier for them to be a trial site. They are currently running the Campath trial, the Tovaxin trial, the BioMS MBP trial, they have basically turned the practice into an MS clinic. I love it. They still see Parkinson's patients and all other neurological disorders, but they have chosen to specialize in the last few years. In the last couple of years since I began the tovaxin debacle (at least it was for me) they have put on a staff of three coordinators, two nurses for nothing but trial dosing and IVSM and Tysabri dosing. I used to get very frustrated when I first got dx'd because I'd have to wait sometimes up to two hours in the waiting room, but people always told me to just bring a book, it would be worth the wait.

I really like my neuro. He is so current and just when I think I've got some news that he hasn't heard before about a new drug, or the recent resurgence of HiCy, he basically educates me on it. He is not against HiCy, but he was also at Hopkins and at Harvard in the late 60's when they were just beginning to expirement. His hesitancy with HiCy, even though he understands how far the process has come, was that he saw some patients that it did not help. He alwasy qualifies it with the fact that in the beginning of HiCy research, they were targetting very aggressive Refractory RRMS patients and rapidly progressing PPMS, so he does understand that some of those patients may have just been screwed no matter what course of action they took. Well once he found out that JH was temporarily not 'taking all comers', that's when he suggested Campath. When he found out that I didn't qualify due to my recent Tovaxin dose, he is the one who asked if I'd heard of Rituxan. So it's really good to hear your Dr. not say "let's try Betaseron, or let's try Rebif". He really thinks the MAB's are it, at least for right now, and since I can't get into JH right now, I'm liking the fact that he isn't opposed to trying off lable stuff. It's also pleasing that he is very aware of what is going on in MS research.

Some Dr's just stick with the stuff that's established and they aren't as current with new research. I can't imagine being a patient that comes on here and asks his Dr. about Campath and they don't know what the patient is referring to, but still tries to act haughty and warns against it just because they don't know what's going on with it. I would have to change Docs, and the closest MS clinic around here is at Ohio State. It's not that far away (90 mins), but it's nice to have my fantastic neuro. in my backyard.
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Postby patientx » Sun Oct 05, 2008 8:58 am

Why does it seem the smaller towns have better MS clinics than bigger cities? The one you have there in Dayton sounds great. To find information about their Campath trials, I called the one near Cleveland, and it sounded very similar. They had both the CARE I and II Campath trials. I live in Maryland, and UMD only has the CARE II trial. Hopkins currently only has the Fingolimod trial; I think they are going to bank pretty heavily on HiCy. Out side of those 2, there aren't really any MS clinics. Just a lot of private practices, and some of those aren't very good.
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Postby Lyon » Sun Oct 05, 2008 9:06 am

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Postby Lyon » Sun Oct 05, 2008 9:34 am

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Postby Artifishual » Sun Oct 05, 2008 11:44 am

Lyon wrote:
I think I understand the cookies now. You guys are friggin nuts.

Bob



Bob, I love chocolate chip cookies, really, I just got back from "The Great American Chocolate Chip Cookie Company", I got like 2 doz. and 1/2 gallon of milk :D
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Postby Lyon » Mon Oct 06, 2008 11:27 am

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