Thanks RW (I see that's what they call you)! I will definitely keep you guys updated! This is a GREAT board. Thanks everyone!

Yay Victor on getting the cost of your Ty down. What they were charging you is ridiculous! I believe mine is costing me about $520 a month...which is high. Amazing, I have friends who have Kaiser...they pay NOTHING for their tysabri! Craziness.

Sheena - sounds like you're having a rough ride from your infusions. I do hope your doctor will talk to you about all of your options if he does decide to stop the Ty. Sad you're having bad reactions. The first 5 days after Ty, I can barely move - so "exhausted" thought it's unlike the other MS fatigue....hard to explain, but I feel like 5000 lbs of lead are on top of me.

Supposed to go for second Ty on May 9 - but am reconsidering as I am now in talks with Johns Hopkins about that treatment...

~k

Neuro just called and I told him about the sides. He is keeping me on TY! He said if I had this reaction w/this drug then I prob would with another and much, much more often. Their going to see how I do next mo. I feel so much better; all is out in the open and I feel safe again.

I just checked my ins and the infusion center billed 1000.00 more this mo. They went from 5200 to 6200. A little worried about this. It's still in processing so time will tell.

Red - I looked at your info ref Hopkins. It looks very good. I think I might consider it hard, if I could qualify. But, I can't due to weak lungs. I wish you all the best if you decide to go that way.

The posters on this board are wonderful and you are what helped me make my final decision to start Ty! I've only had one infusion so far, but I am really interested in hearing everyone else's experiences so that I can keep informed and lend an ear (eyes actually). I was diagnosed just over two years ago and I still feel like a newbie.

I am fortunate to work from home because my job allows me to telecommute. I don't have time to post, except in evenings, but I'm eager to meet and help if I can. Could we work as a group to raise money for Ty users struggling to afford high copays or even the full price of the medicine? I am paying 7.8 times as much as I did for Copaxone monthly, but it is still far less than what some people have posted. I was thinking of Cafe' Press t-shirts, charity fundraisers at national chain restaurants, etc...something we can do no matter where we live? Would the NMSS or Biogen Idec support something of this nature or even keep an account for us so that it goes to the patients who can benefit? I definitely don't want to be in charge of the money, or to whom it goes, but I want to help organize raising funds.

Any thoughts?

Here is a wonderful resource that will help you in paying for a portion of both Tysabri and your insurance co-pay:
Alternative Funding Group (866) 426-2906

Others that may be able to help include the following:
The Medicine Program (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council (866) 794-3571

Additionally, Biogen has a number to call for more directions regarding Tysabri, costs and possible assistance:
MS Active Source (800) 456-2255

-Vic

Hello,
New at this, wondering how everybody is doing on Tysabri? I am trying to get started but have alot of unknowns about the drug.. Some of your posting are great. I would like to know the best and worst of this drug. Been on other drugs not doing well on them. I hate shots

The BEST: No MS progression and enhanced functionality.

The WORST: Allergic reaction to the medication.

I hope that helps.

-Vic

It has been 14 days since my last update of the graphs, so here is the update and it all looks good!

-Vic

Attached Thumbnails

 

I'm going for Ty #2 tomorrow! My 1st 2 weeks after the first dose I felt great. The last 2 weeks not quite so perky, but felt as good as any time on the interferons.

I still can't believe what some are being charged for their Ty. My total bill was under $2600! I don't know what the insurance is paying yet. They are taking their time processing the claim.

What my infusion center charged was only $120 more than the cost of the med. It just doesn't seem fair that some of you are being charged $5,000!

That is just nuts!

hello, I am new to Neuro Talk and was hoping there might be many here who have been on Tysabri for a year or more and can help me figure out if this is just me or not.

I have had 14 infusions and Tysabri has been very good at slowing my MS down, but lately I am starting to feel as though the initial effectiveness might be starting to decrease?

Just wondering if anyone else have noticed an increase in their rate of flares, symptoms, or disease activity after having a good long remission on Tysabri?

I think this concern was triggered by my recent flare. It was the first since starting Tysabri, and mild when compared to my previous flares, but makes me worry anyway.

Thanks for any related experiences! I hope I put this in the right spot, was gonna start a thread about it but saw the Tysabri sticky...