Revimmune at JH?

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby mommasan » Sun Oct 05, 2008 10:13 am

Lew,
You said you had many active lesions in your last MRI. It seems to me, that whether you've had MS 7 years or 1 year, if you're provided with an effective drug to inhibit the inflammatory response, the body will be allowed to repair the myelin and return function.

I have been really disheartened reading about your rapid decline from someone pretty functional to someone struggling with everyday normalcy- it strongly reminds me of my own rapid decline over 2 years. Just 2 years ago, my MS was not recognizable walking down the street. Before I went to Hopkins I could barely walk even with my cane. So, I hope you find something fast to turn it around for you.

Perhaps I am more of an optimist for you than you are for yourself. As much of your decline was recent, I feel there is great hope for a good deal of recovery. Whether it is tysabri or rituxan, I feel you will get good results. But, be aware that you will be very open to infection with rituxan. The severe reduction in b-cells poses potential for on-going risk.

Keep posting.

Sandy
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Postby Loobie » Mon Oct 06, 2008 3:51 am

Boy I hope you are right Sandy. You are correct in your conclusion that my decline has pretty much been in the last two years. Two years ago at X-mas I remember jogging every morning during the break; right out in the snow. It wasn't the distances I had been jogging for years, but it was still like 3-5 miles depending on how I felt. So it's heartening to hear that you had some of the same issues and got some back. I really think Tovaxin was like water for me. I think that my being off of Avonex for about 18 months prior to the Tovaxin trial basically means that I was doing nothing, save for living a welllness focused lifestyle, medically to interrupt progression for 3 1/2 years. Of course I have no way of knowing if it was Avonex, or just early MS that made me seem stable. So just getting something going could be what it takes. So were you on Tysabri? Our courses seem very similar. Just two years ago nobody, even people who saw me all day, could believe I had MS. I'm aware of the infection risk w/ Rituxan. I guess we'll just see, because if he wants to start me on it, I'll just get a mask, paint some lips on it, and look like a SARS patient.
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Postby mommasan » Mon Oct 06, 2008 5:03 am

Yeah, but just one dose. I had a delayed allergic reaction 12 hours later. But, even after that one dose I felt a remarkable difference in my fatigue level and improvement in walking. Of course, I was still walking pretty normally at that time, anyway. I couldn't walk for miles, but definitely for more than a few blocks, or around the mall, with no problem. But, after that one dose I was walking with a definite bounce to my step.

Sandy
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Postby Jamie » Mon Oct 13, 2008 4:39 pm

Lew,

Just keep bugging them, that's how Keri got in.

Convince them to do it discretionally, they are good people if they possibly can i'm sure they will.

Good luck.

Jamie
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