*This is the place to ask questions, get information, talk to people who are on Tysabri, and help each other out.*

The information about PML has been posted as it was reported, as has this death. When more information becomes available, it will be posted.

Please keep this thread to the spirit and reason for which it was started.

ditto.

this is not a thread for the nay-sayers of tysabri to post on.

this thread was made for those who are on tysabri or thinking about it to get information and support. from those who have first hand knowledge. people who have been on it or are on it.

the article and information about the person who had died was first posted in a responsable manner. others popping in with the "i told you so's" type of posts do not belong here. when all of the facts are reported (autopsy results i imagine) they will be posted. until then, yep, it's all just speculation.

natalie expressed it well.

Finally, some good news in this MS journey! I had an MRI after my 6th infusion of Tysabri. No enhanced lesions, no new lesions--everything looks just the same as it did before I started the drug. Whoohoo!! Now I am off to California to celebrate the holidays, my birthday, and no new lesions!!!

That's great news, Natalie! Congratulations.....and enjoy your holiday!

Oh, almost forgot.....Happy Birthday!

I'm new to this group and looking forward to learning what I can -- and hopefully contributing something as well. My new bride is scheduled for her fourth Tysabri infusion next week after developing antibodies to interferon (Betaserone for a year). Do any of you know the percentage of patients who develop antibodies to Tysabri?

Thanks
JJ

Hi JJ and welcome to NeuroTalk!

The drug monograph lists information for antibodies under "Adverse reactions- Immunogenicity. See pages 9 and 10.

http://64.233.169.104/search?q=cache...lnk&cd=5&gl=us

Hope that helps you!

I had my 10th infusion last week. I haven't been tested for antibodies, but I haven't had any reactions to suggest that they have developed either.

How is your fiancee doing with Tysabri so far?

You mean my 'blushing bride'? (First wedding anniversary is Valentine's Day !)

Thanks for the feedback - you provided the answer to my question.

LL (Love of my Life) never displayed any 'side effects' after one year on Betaserone - but blood tests last year indicated that her body had developed neutralizing antibodies to Interferon. Betaserone wasn't slowing progression of the disease because of her antibodies to Interferon and that's why her neurologist recommended that she switch to Copaxone or Tysabri. He encouraged Tysabri because of clinical evidence indicating that Tysabri was more effective than Copaxone in moderating/controlling progression - despite the risks.

My new bride is doing well with Tysabri. She has minor side effects such as "flushing cheeks" and "severe fatigue" on the day of infusion - but she seems to (otherwise) tolerate the treatment well. She doesn't seem to recognize any significant difference since starting the treatment, but I see some improvement in her energy level. Time will tell.

We appreciate the feedback from all of you in this group. We learn more from groups like this one and from other groups than we do from all the medical journals and the doctors. Your personal experiences are helpful to us.

Health Talk (dot) com has another MS/Tysabri group that is helpful.

Until we find a cure, we hope that therapies like Tysabri will help us "stay the course."

Thanks again.
JJ

I was in the origiinal Antegren trials years ago. I have been off Tysabri for a while. I just went today to fill out all of my paperwork at the MS Centre and am going for my MRI this week. How long after you filled out the paperwork did it take you to get your first infusion?

The nurse didn't think it was going to take longer than 2 weeks before all of my paperwork would be in order. I was just wondering how long it took most of you and your insurance companies to approve it?

Thanks!

I was approved in 2 days and I belong to a HMO. I think that must be some kind of record. I thought it would take a couple of weeks.

Hi Chris!

It took me a bit longer than two weeks. When I went for my MRI pre-Ty, it wasn't good and the neuro insisted that I do a course of steroids ( stupid MRI). Then I was approved but they hadn't yet trained the infusion center at the hospital. Then they had to look into who was paying what for me, cause I didn't want to get hit with the post infusion shock of a huge bill! I HAD to know how much I would have to pay, if anything.

All in all I think it took a month before i got the first dose. I hear things are a lot quicker now.

Good Luck! Let us know when you start!!