Dear Cherie, Harry and Me, for that matter,

This is a thread for Tysabri users and wanna be users to support each other in their choice. It is not a place for our kibbitzing about the media info or misinfo of the pros and cons of Tysabri.

That has all been said, argued and re-argued and now, with the data known, PwMS are making an educated choice to use Ty. We should respect that and stop muddying the waters here.

If something new comes up about Tysabri..good or bad, please start a new thread, with the important info. Let's come here, only to add our support. These PwMS know what their doing or certainly should, by now.

That is how a "sticky" about "information" works normally. The instructions about this particular thread were clear too:


People who are new to this forum will not only be wanting to read about other's experiences, good and bad, and historic advice on issues . . . but also ALL the information that is available to evaluate this option and make informed choices.

While I agree the detailed conversations might be better suited to a separate thread, I believe that the links to those discussions and "new information" should also be found here (in the thread designated as "a place to keep it "together").

Cherie

Has anyone tested positive for tysabri antibodies? I have not yet heard my results (has been 2 weeks), but was wondering what others' experiences have been. These seems to be some conflicting information out there as to whether or not you should continue with treatment, particularly if you are in the first 6 months. I know that infusion reactions may be a sign of antibodies. But the Ty literature published by biogen says these can go away after the first 6 months? I guess I just need to be patient and wait until I hear from my doctor. I think it can take up to 3 weeks to get your results.

Lady you hit it straignt on, I think you are right. That is what I thought but just needed another opinion from one more educated then me. To all, I did not come here to start stupid remarks... I have the answer I needed and from a person I consider very educated on TY. Thank You Lady - BTW all - I did my research - but there is always someone more educated in the area. Harry. no one knows everything!

Barb

I know one guy that did. And he was taken off Tysabri.

You are absolutely right but if I was receiving Tysabri, I sure as heck would want the doc prescribing it for me to be fully knowledgeable about everything surrounding the drug....especially if any problems surfaced.

Harry

Barb,

I know two people who have tested positive for antibodies. One was tested after 8 infusions (found to be positive) and is now on another therapy. One tested positive after being taken off Tysabri when it was pulled from the market. When it was returned, he went back on and started having major systemic reactions. He is in hope that the antibodies were transient and that he will be able to return to the therapy. Only time will tell in his case. Those are the only two people I have heard from who have had antibodies, out of the hundreds I have had contact with who started and reported on their Tysabri experience. 99.9% of the people I have had continuing contact with are still on Tysabri and continue to report on decreased relapses and progression.

I have not been tested for antibodies because I have had no adverse events, and my 6 month MRI showed vast improvement. I would be tested if I was having reactions after 6 months or if in the first 6 months I had adverse events that continued to worsen. Your results will come back and answer your questions.

As always, Tysabri is not for everyone. It's like every other drug. What works for one may not work for another. It is not a failure, it's an intolerance. We all have them, for one thing or another , regardless of how much we try to be accepting or accomodating or hope they will help or that the adversity will go away.

I wish you nothing but good results with Tysabri. Only you and your doctor can say when it's time to move on. The norm is 6 months, but if it's bad for someone I would be the last one to say stick with it. It's your choice and life is too short to feel bad!

PLease let us know how your tests turn out.

Riverwild, I am hoping the results come back negative or that the level is low as I have been experiencing more energy and using my cane less on most days. Of course I do not know for a fact that these changes are due to tysabri but... Thanks! Barb

GET HELP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My prayers are with you!

To all members: I' sorry to have had a problem on this board. I thank you with all my heart for the help you have given to me. I would never have made it w/o you. God Bless Each Of You! ~Sheena~