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Discussion:
tysabri
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Dr talked about tysabri infusions yesterday....to help shrink my lesions ....Is anyone want to share there thoughts?

Thanks
Cathy
Posted on 02/02/13, 10:20 am
19 Replies | Most Recent Add Your Reply
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Reply #11 - 02/03/13  9:07pm
" Hi Cathy,
It's me, SharonMom. 2 years ago I considered going on tysabri. But then I had a blood test and tested positive for the JVC virus. This means that there was a small chance, but a valid chance that this medication could have caused me to have a brain infection that would have killed me.
Because I was only 43 at the time, and because I know that my untimely death would have caused my husband's heart to be broken, I just could not take that small chance. Because the last lesson that my Mother (who died on 3-1-09) ever taught me is that death is VERY final.
So instead of tysabri, I started taking copaxone every day, even though I hate shots. Because my love for my husband is way greater than my hatred of shots. The copaxone, along with ampyra have stabilized my M.S. A couple of days ago my husband took me for a ride on his Harley trike. And, as I experienced the joy that I feel when my arms are wrapped around my husband, I KNEW that I had made the right treatment decision.
Please do not take the chance of getting a brain infection that would kill you. I am sure that there are many people who love you who desperately want you to keep on being alive my friend! "
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Reply #12 - 02/04/13  2:50pm
" I was on Tysabri for 3.5 glorious years!
It worked great for me
I didn't suffer any side effects or relapses and it greatly improved my balance , walking, speech and energy!
Wonder drug eh?
Yes it was but sadly I had to go off it last Nov because I tested JC virus positive which placed me in a higher % to contract PML a serious and sometime fatal illness
Plus it's a higher risk for people taking it after 2.5 years
Be sure to have your Neuro test you (blood test Biogen created that determines + or - for the JC virus before you start taking it
Or you can wait for Biogen's BG 12 which is an oral treatment so it takes the PLM scare off the table for their JC virus Tysabri users
So I continue to wait patiently now on no med.
I've heard that the FDA should approve by the end on march and available to the public in May or June
Or you can check out the herbal supplement called Protandim which is ant based with the same treatment compond as BG-12
Actually Biogen paid big $$$ to have a trial done comparing the two and Protandim tested higher then BG-12 all this data is on the web "
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Reply #13 - 02/04/13  6:41pm
" Dr did all the blood work to see about JVC virus.If I test postive I will NOT do the tysabri I will stay On my Rebif...Thanks all for your replys!!

Cathy "
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Reply #14 - 02/04/13  7:14pm
" I was on Tysabri for 2 years, but still had relapses though maybe not as many as on Rebif. I'm not sure. Then I tested positive for the JC virus and after some research decided to stop. My neurologist said that all of her patients on Tysabri except for 1 tested positive and said that I am the only one that stopped Tysabri. I found that kind of strange since the research that I read seemed to indicate that if you'd been on it for over 2 years your risk increased and the doctors at the larger MS centers were generally taking their patients off Tysabri when they tested positive. However, that was over a year ago and I guess everyone is doing okay. "
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Reply #15 - 02/04/13  8:35pm
" I, too, have enjoyed my Tysabri experience. No side effects and it is a restful time to relax and read while I'm getting my infusion. No new lesions, either. I tested positive for the JC virus and I'll be going off in March. Not sure what is next...B-G-12 or LDN. Still researching.
Best of luck in your decision. "
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Reply #16 - 02/05/13  10:29am
" I was told the JC Virus test needs to be done once a year.
Which actually makes no sense cuz the JCV antibodies doesn't
just show up!
Something about the Tysabri compound activates the JC antibodies and turns into PML (brain infection). Very strange!

My Neuro said that about 80% of the population has these antibodies from a virus they got when they were young?

Apparently the antibodies can stay dormant forever and the virus never comes back or like I said Tysabri somehow activates them.

I tested positive last fall and had to stop my Tysabri treatments
: (
I was doing so well on it!
Chris "
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Reply #17 - 04/24/13  11:01am
" I know this post is a few months old but I have tested positive for the virus since the first ty infusion. They do blood work every month. Kinda scared but feel I have no choice. "
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Reply #18 - 04/24/13  11:30am
" I know this post is a few months old but I have tested positive for the virus since the first ty infusion. They do blood work every month. Kinda scared but feel I have no choice. "
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Reply #19 - 04/24/13  3:23pm
" I started Tysabri in November of last year and I was scared to death and did NOT want to "mess with my immune system." It was the best thing I have ever done so far though with regards to my MS, GLAD I was willing to try it. So expensive though!!! :-( I have to remind myself that it is worth it. "

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