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Old 07-08-2009, 05:39 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by MdotDdot View Post
Tysabri works great for many of the people I know--which is about 10. The PML risk is there, and one should assume it fatal when it occcurs. The risk is higher for those who have received mutiple immune modulating therapies, especially when they have been given in close temporal proximity. If two immune modulating ("traditional") therapies fail to prevent flare ups then tysabri should be considered next along with other treatments--with the understanding of the risk of PML.
Hello MdotDdot and welcome to the Tysabri thread.

I have to disagree with some of your post.

The data since Tysabri's return to market shows that PML is NOT necessarily fatal anymore. PML CAN be treated. When caught early, there may be little damage. The key to preventing damage due to PML is VIGILANCE, and those of us on Tysabri are pretty vigilant by now, and so are the neurologists prescribing Tysabri, and the infusion centers administering Tysabri.

As to traditional therapies, who should choose? We get sent home with a pack of info from the drugmakers, and told to come back when we pick a therapy. It's OUR choice. It should BE our choice no matter what. I planned to go on Tysabri and was scheduled for my first infusion when it was pulled from market in 2005. I hadn't taken any other therapy prior to that and the ONLY reason I agreed to do Copaxone was because MY CHOICE was no longer available and Copaxone seemed to be the least obnoxious of the drugs available.

I waited and worked to get Tysabri back on the market, while suffering from relapse after relapse on Copaxone. Copaxone obviously wasn't working for me, so it would be considered inadequate. When Tysabri returned to market, I went on it as soon as I could get on it. I haven't looked back since.

It's my brain. It's my body. I am an intelligent person and I can weigh the risks and benefits using the available information. I would still make the same choice today, to use the most efficacious therapy available to prevent relapses and slow the progression of disability.

Tysabri is prescribed as both first and second line therapy. The FDA clarified that back in 2006. Tysabri is generally recommended for patients who have had an inadequate response to or are unable to tolerate alternate MS therapies. I cannot tolerate losing my brain to this disease, nor can I tolerate drugs marketed to people with MS that, at best, give the patient a 34% efficacy rate.

I haven't had a relapse since I started Tysabri and it's been over two years now. My MRIs are tremendous. Not only do I have no new lesions and no enhancing lesions, many lesions seen previously are reduced in size or gone completely. My vision is back to pre-diagnosis levels, my spasticity and fatigue have been cut to 1/3 or better than where they were before Tysabri. My thinking is clear and I can read a book again without having to re-read every paragraph I previously read. I can retain information again. I'm not dizzy or walking like someone who is intoxicated. I can drive. I can work full time and work more than one job. Time is brain. So far, I'm holding on to mine in what I consider to be the best way that I can.

So, do you have MS? What therapy are you on? How's it working for you?
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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Last edited by Riverwild; 07-09-2009 at 05:39 AM. Reason: Punctuation!
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