Tysabri info from ECTRIMS
 

There were some pretty postive results from the ECTRIMS conference on the long term (3 yr) efficacy of Tysabri. I have been major relapse free for the years since my one year on the Tysabri trial. The results I read today would seem to say that this could be due to the Tysabri dosing from a few years ago. Does anyone find that plausible?

I've been scared of going back to it - for fear of what else it might do to my system. I'm amazed that the results could last for this length of time. Could that just be the pharma companies marketing??

Thanks :)

Laurianne

Hi mexigirl.

Did you move back to the Gulf Coast,or are you up in Connecticut.

I remember Dee reporting that she was on Tysabri and Avonex for 3 yrs, during the trial and dropped Avonex and continued on, until they pulled it from market. In the next year she had one flare after another and was misirable. She is going back on Tysabri at the end of this month.

Good luck on continuing with your remission.:)

The problem with drugs and MS is that you never really know if it's the drug working or the path the MS has decided to take.

Over on ThisIsMs, there was one Tysabri user who tried to start back on the drug again but due to antibodies that were built up during the first couple of infusions back in Jan/Feb 2005, the patient can no longer be a candidate for Tysabri. She stated that 4 other patients in the neuro's office ended up with similar problems.

There are so many things that are unknown about Tysabri at this point and it won't be until many patients start using it again that we will start to learn more about it.

Harry

Hi Harry . . . long time, no see! :) I'm glad you've found the board.

Have you heard from Mark at all?

Cherie

Yup. Thats why I think it would be nice to have a running thread on Tysabri from folks on it. We might spot trends before the pharmas report them. Kind of like how the bloggers spotted the fact that Congressman Foley liked to talk sexual stuff with the Pages before teh network news spotted it.

Cherie,

No, not a word since the original BT went dead.

Harry

Well, after typing that question here, I found that Mark was actually posting on this board now too.

It is so nice to see everyone again. Seems like a high-school reunion or something, but it won't be over at the end of the weekend.

Hi Laurianne, nice to see you again too!

Have you progressed much since the original trial, or does it seem that the drug may have slowed that down too?

Cherie

Hi there -

Back in katrina-ville for the time being. Pretty homesick for FALL up in CT right now ... that should change once winter sets in. The medical care and MS support here is pretty shabby, probably will be for a while. Not sure what I will do next. Turning 42 tomorrow and I'm very philosophical right now ;) Hope all is going well with you!

Laurianne

Hi Cherie -

I haven't really progressed but then I never have been progressive (take that however you'd like ;). I have little annoying flares, once in a while a big one, and all the time fatigue etc. Hard to gauge what is/isn't working for me.

It's nice to see you too - I'm so glad we all have a "home" again!

Laurianne