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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Hmmm...interesting
Sheena -
I've never heard the herpes or the HIV thing before in regards to previous deaths involving Tysabri.
There were two deaths from JPL when tysabri was given with avonex before. Since its re-release, no deaths reported from that virus. There have been two deaths recently from melanoma - however, they can not 100% attribute it to the tysabri. It sounded to me as though both of those patients had either family history or prior issues with skin cancer, etc. If you look on the fda's website - it discusses these deaths. I believe NMSS also has it on their site.
My paperwork has been filled out and sent to TOUCH/Tysabri - and I'm eager to get on it.
Yes, these drugs mess with our immune system - and all drugs have risks. You need to weigh them out and decide which risks are worth it to you. I imagine that when you take anything that messes with your immune system, you are leaving yourself exposed to any slew of complications....
I decided that I am not afraid of death - I am more afraid of living with big question mark over my head (or ticking time bomb - that doesn't have a timer - and I don't know when or even if it will ever go off) - that is how I'm beginning or trying to see the MS. When I read about Tysabri - I know it isn't a miracle cure...but it seems to be one of the best out there - and that if it works for you - it REALLY works. But it doesn't work for everyone...nothing works for everyone. There are several reasons I am not going on interferon treatments - and I did copaxone for a month - and my doctor and I discussed that it probably wasn't the most aggressive or worthwhile treatment for me.
Have you been to msworld - and read their forums as well? There's a whole bunch on neurotalk and msworld about tysabri. I think i've read everything. Also, there are some tysabri diary sites - where people have shared their experiences taking it, too....some people who have had 15+ treatments. I have tried to read everything I can...though at this point, I am going to try to step back a little bit....(which is hard...but I don't want my life to be ONLY about MS....though right now it certainly feels that way).
I'm sorry it feels like your doctor lied to you - I would ask him about it - and ask him to clarify and explain things - so that you can make the best informed decision that you can make. Have you been to tysabri's website? (just add .com after the drug's name) - I think they address the deaths, too.
This is serious stuff - and should be thought about and discussed. There is lots of info out there - and I try to find the most reliable sources I can find (NMSS, FDA, etc). I think the info I provided is accurate - but I dunno - so double check everything I said! My brain doesn't work the best these days! LOL. Something bout having holes in your brain that causes problems! 
And Tysabri isn't your only choice. You might respond well to one of the other treatments out there. Like everyone here has said - none of us know the course of our disease until we experience it, for the most part. I plan on being as aggressive as I can - and my choices right now are a little more limited b/c I am unable to take the interferon treatments - so it's between copaxone and Tysabri. Like I said - I did copaxone for a month (just stopped a week ago so I could wash out my system for tysabri)....and I decided I wanted to try Tysabri.
It is a personal decision. and while your doctor can advocate for certain treatments - in the end, you get to make the decision that is best for you in this case...especially b/c they all carry their own risks.
What are your thoughts right now?
~Keri
Last edited by RedPenguins; 02-24-2008 at 02:47 AM.
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