I'm traveling by myself right now in a city where I know 2 people (and both of them are out of town). My husband is on a plane right now to Japan for 10 days (so he can't be reached). I'm SO worried about the Tysabri news. I've had one dose of Ty. I'm due for the second one on the 11th of Aug. I guess I will need to call my neuro to see what to do now. Do I stay on it even though the risk of PML is higher now? I had no side effects from it, the convenience of the drug was great. Rebif and Copaxone made me utterly miserable and unable to function at my job. I thought I had found the golden ticket with Ty. Today's news is just a reminder of how there just seem to be no good options with this disease and things can change in a second-- quality of life v. side effects (includ. ones that can kill you), unpredictability, fear of the future.

It will be 1 year since the diagnosis in early Sept. Currently I have no MS symptoms and only had a very mild case of optic neuritis and some dizziness when I was diagnosed. So life should be great right??!! Yet I am still having problems adjusting to the idea of this disease. Just the "existence" of it is putting a strain on my marriage (which is only 1 year + 2 months old). Expectations at my job are so high. And then I beat myself up because I can't seem to get a grip on things even though on the surface life looks so good.

The Ty. news just threw me for a loop. And I'm totally alone right now. I can't reach my husband by phone and I can't go out with a friend. Does any of this stuff ever get easier?

Natalie

Don't let the news get the better of you. The risk is no different now than when you started on Tysabri. The label has always said the risk was there. These people are still alive, they have not died. I know it's scary. We all went through this when Tysabri was pulled off the market before.

I had two infusions when it was pulled off the market. I was scheduled for my 3rd infusion the day after it was pulled. Then I fought with many other people to have to put back on the market.

The media was on a feeding frenzy. They didn't report the facts right, they skewed the data, they made it sound like we were all crazy for wanting this deadly drug back on the market.

When in fact, the statistics were mostly media hype.

I testified in front of the FDA, along with 45 others, to bring this drug back on the market so we could have a choice.

It's closely watched and monitored. Nothing is absolute. But I do understand your concern. Been there done that.

Relax and let all this hype die down. I am not trying to minimize what's happened, just letting you know that the risks are there for every drug on the market. EVERY drug.

PM me if you want to...

Natalie. It's tough being alone. I know.

Natalie,

Do not let any of the news scare you. Most of the time it is just overblown even though there are not enough data to draw solid conclusions.

Sometimes "news" is just hype to draw a persons attention to a news source rather than to a real issue.

-Vic

Natalie,

I just had my 15th dose yesterday. I'm not concerned. They thought there would be more cases... But here in the USA we're using the TOUCH protocol and they're watching us closely. We aren't taking any immunosuppressant drugs here. We don't know the circumstances of what happened there.

I'm not considering stopping Tysabri from this news. It will likely have to be pulled from the market for that to happen. Try not to worry. You can be sure the news organizations are giving this a bit of extra emphasis to make a headline.

natalie,

i'm not on T but i can appreciate your fear.
you've gotten some good advice. i take a lot of meds and i read the drug comp info. they list practically every SE known to man. yet i tolerate my meds well.
as with any tx you have to weigh the benefit vs risk. i would talk to your dr to get this news into perspective.

you're never alone when you're with us.
i just take one day at a time with my MS. even healthy people can't see into the future.
all you can do is your best for today.

take care