Been off of the big TY for a while and had one round of IVSM.

Stay on the med as long as you can unless it is a huge problem.

FYI - The cost of infusions was my original problem...and once again the infusion people have hit. They just sent me a bill for 5 days of IVSM totaling $11,500 ! The idiots forgot to get it approved by my insurance even though they called in advance to get my insurance info to complete the approval process.

I think,...no I know that they will have to eat this one since we recorded all calls with their approval (of course) wherein they said that they needed pre-approval for the infusion.

Can you believe that 5 days of IVSM infusions cost so much?

Unreal...

-Vic

Boy, Vic!!! It just never ends for you, does it??? Jeez!!!!

Hope the steroids helped!!

Everything is overpriced in California.. move to Ohio

Yes, did the IVSM help?

NOPE. The IVSM did nothing, though I would not have used it unless my neuro-team was not so adamant about it.

Everything is worth a try (well, most things...).

-Vic

Hey Vic, Sorry to hear the IVSM didn't help. Hope you are feeling better soon.
Natalie

I think that the benefits of the IVSM are kicking in!

Yeah!

(But I am still not paying all that money for the treatment when it was supposed to be covered by my insurance.)

-Vic

(((Vic)))..I'm so sorry this is still a problem!
I was to start Ty earlier this year, but had so much trouble getting any info about coverage from my insurance company, I cancelled my appointments. Finally just found the right person last week, and the cost of the drug is 100% covered (yeah), but I won't know how much my co-pay for the infusion will be til I talk to the infusion center. I refuse to have it done til I know what I'm getting into. Why does it have to be so hard?
I hope you're feeling better soon, and ready to kick some infusion center butt!

For those who have not yet heard, Biogen filed another 8K this morning about another case of PML. I don't have any confirmed details yet, and will post when I know more.

This is what I have from a neuro:
"I haven't heard anything more about the case than is on the 8K. This patient was monotherapy for 26 months and in the EU. This patient's PML is confirmed using accepted definitions of positive PCR in individual with consistent MRI and history. Clinical vigilance seems to have caught this one early as well. FWIW, the last time I got an update, patient 1 (Sweden) was doing well and at home, Patient 2 (Germany) was still in ICU but able to be extubated and able to communicate some (expect permanent sequelae), Patient 3 (US -Florida?) was discharged and doing well. Haven't yet heard what symptoms this patient had. "

Here is a link to an editorial on Tysabri (not this case announced today) and "suspected cases."

This article was written 6 days ago and cites an "investigative news piece" about 22 suspected cases of PML as of Oct. Take it with a grain of salt. Not sure what investigative news piece means??

http://www.healthcentral.com/multipl.../51702/tysabri

It's not what Biogen/Elan are telling us, it's what they aren't telling us when it comes to Tysabri! You really start to wonder what the long term effects of this drug may be.

Harry