Sheena -

When your info is given to TOUCH - they will confirm your benefits and find out what it will cost you. It isn't possible for anyone to give you that answer here. Even if you call the insurance company, they will want all sorts of codes and stuff (for the infusions, meds, etc.) - so it won't be easy for you to find out. However, your neuro's office and/or TOUCH can do it for you. Same pretty much follows thru for the other drugs. When I went on Copaxone - Shared Solutions contacted my insurance co, who put them in touch with the pharm that I had to use - and it was taken care of that way. This is big $$ - trust me - these people will help you.

Good luck,

~Keri

Thanks for the info. This is so not great. Another wait and see game. Well, I hope they use the fax lol. Thanks Again

I had a reaction during my second infusion. Mostly it was difficulty breathing. As usual (when it comes to me) the diagnosis of the problem was confusing. I had one of the worst chest colds ever a couple weeks before, but I was just about all better. However, I heard the word "asthma" applied to my condition for the first time ever. 53 years old and this comes out of nowhere.
Anyway, it seems that my body decided to have it's first real asthma attack during the infusion. So was it a coincidence or did the Ty somehow trigger the attack or was it the Ty alone? Who knows? I do know that it was scary as hell. Now that I have experienced a few, I know what to expect so it's not as bad. So I have been getting benadryl and steroids before my infusion. Talk about a roller coaster! The benadryl brings you down and while the steroids are pumping you up. They really love steroids at my neuro.
I've had a few infusions since and they are better though not trouble free.
I think I get an MRI soon so I'll get a chance to see if this stuff is working at least as far as new lesions.

Hi Sheena,

One of the most important things to look for is your maximum out of pocket. That's the most you will have to pay before your insurance company kicks in and pays in full for the rest of the year. I have Blue Cross. The initial outlay for the year is painful, but with this drug I very quikly reach the max and don't have to worry any more.

Katty

Thanks. I called my ins agent today. Looks like mine will be 4500. per yr. It hurts but it sure beats what it could have been. Oh, for those like me who have private ins - I was warned not to be one day late with payment. He said BCBS could look for a reason to cancel. Sheena

I copied this from another forum...FYI.

Tysabri (natalizumab)

Audience: Neurologists, other healthcare professionals, patients[Posted 02/27/2008]

Biogen Idec, Elan and FDA notified healthcare professionals of reports of clinically significant liver injury, including markedly elevated serum hepatic enzymes and elevated total bilirubin, occurred as early as six days after the first dose of Tysabri.

The combination of transaminase elevations and elevated bilirubin without evidence of obstruction is recognized as an important predictor of severe liver injury that may lead to death or the need for a liver transplant in some patients.

Tysabri should be discontinued in patients with jaundice or other evidence of significant liver injury. Physicians should inform patients that Tysabri may cause liver injury.

Surely, regular (at least monthly) blood/liver checks are part of the monitoring protocol with Tysabri . . . aren't they?

Cherie

Let's get it all out there now, so people have the facts.

Letter sent today to Doctors:
http://www.fda.gov/medwatch/safety/2...hcp_letter.pdf


"FDA spokeswoman Sandy Walsh, however, said the letter does not reflect new cases but is simply a reiteration of a revised label the FDA approved Jan. 16 as part of the expanded use of the drug for the bowel disorder Crohn's disease." http://uk.reuters.com/article/hotSto...00898620080227

"Many other drugs are linked to liver injury, and it's possible rare cases that wouldn't be spotted are being found with Tysabri because it is closely monitored for infection risk"
http://www.bloomberg.com/apps/news?p...AYvts&refer=uk

You should ASK for your vial and box EVERY time you are infused. They are required to provide it for you if you request it. I get mine EVERY time. I want to SEE the changes they make to the label when they make them.

I want to SEE what they are saying to people with Crohns disease who take Tysabri. They are changing the label so that doctors and patients are MORE aware that liver complications can result, especially in Crohns patients who have been on other biologic drugs.


Look at the labeling for Avonex, Betaseron, Rebif AND Copaxone. All carry warnings about hepatotoxicity. For that matter, look at aspirin, tylenol, lipitor, etc, etc, etc.

Knowledge is Power. Empower yourself.

Thanks for the links, Riverwild.


What does "ask for your vial and box" mean? Does this have anything to do with whether people's blood/liver is checked regularly?

Cherie

My neuro has not suggested bloodwork. I go for my 4th infusion next Wednesday. I do plan on asking about it.