Need help on new drug and a story about Tysabri and Lymphoma

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Need help on new drug and a story about Tysabri and Lymphoma

Postby cjwithms » Wed Feb 24, 2010 11:43 am

Diagnosed with MS in 2006 after an attack that left me not walking, I was put on steriods for a week and got back up but not without the help of a cane. I started Avonex in early 2007, but after having mini flare ups after each shot and then starting to not walk well again with a cane went on Tysabri in June of 2007.

Tysabri worked great, every month when I was due for the infusion I would start to loose my ability to walk and after treatment and with my cane, I was living life...However, after 18 treatments, I was diagnosed with Hodgkins Disease - Lymphoma and went through Cancer treatment and radiation for most of the year in 2009 and have been in remission ( I see my onocologist next week, so hopefully, I am still good).

Question/Help - I had been doing excellent since the cancer drugs, even walking better and sometimes with out the cane and then...the attack came about a month ago - pretty big and bad - lost mobility and eyes started going so back on steriods I went and now my doctor wants me to go back on a "drug" - like Avonex, Copaxone, etc.... and I don't know what to do. I could just try and wait it out and see if I can live on steriod infusions, but know that the delay may cause damage that can not be fixed ( I still have some eye issues since the most recent attack)

Any recommendations? Anyone else diagnosed withh Lymphoma while on Tysabri?

Also, as an FYI - the Tysari/Biogen people never followed up on my case with the FDA...I still have their paperwork that was given to me by my doctor that needed my approval. I called them to discuss what they needed and they never followed up...guess they didn't want to know...
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Re: Need help on new drug and a story about Tysabri and Lymp

Postby NHE » Fri Feb 26, 2010 12:28 am

cjwithms wrote:Also, as an FYI - the Tysari/Biogen people never followed up on my case with the FDA...I still have their paperwork that was given to me by my doctor that needed my approval. I called them to discuss what they needed and they never followed up...guess they didn't want to know...

Is there any way you can send the paperwork directly to the FDA and bypass Biogen since they seem to be stalling on this issue?

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Postby bigfoot14 » Fri Feb 26, 2010 6:54 am

Cj
I can't help much....my wife tried both beta-serun & copaxione
and her body basically rejected both... after that her neuro didn't even want to try avonex or rebif....

now we're trying to get her scanned for CCSVI

I wish you good luck and hope that you have a good support group

And from everything I've read, yes biogen is stalling....
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