Joelle - how wonderful - I hope you continue to feel well - glad your experience was a good one....

Chris - CONGRATS on the news!!

I, too, had a message from my neuro that he thinks we can go ahead and submit request to insurance company for tysabri treatment. I've been very fortunate and lucky with my insurance company (pre MS)...so my hope is that will continue...but I plan on staying on top of this and giving it a go. I know it's not a miracle cure....but I'm remaining optimistic...

Again - congrats to everyone who is being helped so much by tysabri...




~Keri

This may have been addressed already - but being that I read the thread in full days ago - and memory has more holes than my brain... (sigh)...I'll ask again... (so please forgive)...

How much of a washout did you do of your previous meds before you had your first Tysabri infusion? (ie: how much time passed between your last dose of your old med before starting tysabri?) I've heard some people say 2 weeks to 30 days...

I just saw my neuro and he said we will go ahead and start the process for the Tysabri.

As of today, I am officially off of Copaxone...and my paperwork has been faxed to the TOUCH people. Next week I plan to make sure they are in contact with Blue Shield so the ball is rolling. (I guess I'm back in fighting mode. I shift from moment to moment - from feeling hopeless and wanting to wave my lil white flag to wanting to fight aggressively.)


I need to go rest - the neuro experience was exhausting.

~Keri

The FDA "suggests" 2 weeks but the only "requirement" is that you not be on Tysabri and another DMD or immune suppressive med at the same time....excluding courses of IVSM for flares which are allowed.

My neuro told me to stop my Avonex and schedule my infusion when the insurance approval came through. So my first infusion was a week after my last Avonex shot.

I have now had 16 Tysabri infusions, lots of benefit and no problems so far.

While cleaning out my bookmarks and favorites files, I came across an article that reminded me of one of the reasons I started Tysabri. I decided to save this along with the associated scientific studies, just so I can revisit them again in a year!

http://www.neurologyreviews.com/aug0...inationMS.html

Now maybe the early scientific studies were only EAE murine models, but those darned mice were saying something and I for one am glad I listened!

Has anyone received a communication, whether by mail or email pertaining to a survey by Healthmedia about Tysabri?

Curious because it's out there and I haven't received it yet.

Hello RW,

Nope, no such survey has turned up in my box. Did you get one?

Dave

Nope Dave! Nothing here yet!

I received this in a letter from a former board member of the Multiple Sclerosis Center of Atlanta. I am posting it with his permission. (Edited to protect personal information)

For those of you who go to this center, you may be interested in what he got for stats there.


This is his disclaimer:

"The stats were not compiled from a format that lends itself well to publication for statistical analysis. Patient records were not set up on the computer in the same fashion that would be used in an FDA study.
The numbers were provided to me directly by the head of infusion operations at MSCA and were from his personal compilations over time and made at my request.
The numbers/statistics were discussed at a recent meeting of MSCA's Board, of which I am a recent member"


"The Multiple Sclerosis Center of Atlanta [MSCA] has the largest concentration of MS patents in the world. Currently, there are nearly 4,000 MS patients treated there. The MSCA is a non-profit treatment, research, educational and support group for MS patients, along with some other neuro work, including Alzheimer's.

Currently, the MSCA has just over 500 patients on Tysabri, more than 20% of their eligible RRMS patients. This number continues to grow steadily in both % and total numbers. The MSCA's protocol for screening patients and follow up for those goes beyond the typical MS practice in scope and detail resulting in some significant tracking of those on Tysabri.

Since the MSCA was involved with the initial Tysabri trials before {it was withdrawn from market} and was among the first few groups registered for TOUCH, it has had considerable experience with Tysabri patients who have been on the drug for 18 to 48 months.


During this time:

-NO PATIENT HAS HAD A DECLINE IN THEIR MS CONDITION

-1/3rd of the patients have remained stable

-2/3rds of the patients have had a MATERIAL improvement in their symptoms, including improved mobility, balance, vision, energy and cognitive function.

-The virtual elimination of new lesions AND substantial eradication of existing lesions has been consistent with the growing evidence of symptomatic improvements

-Only a few [less than 6] have had allergic or other reactions which resulted in their dropping out of Tysabri treatment and several have dropped treatment due to copay difficulties."

I will continue to provide information as I receive it.

Good Luck Everyone!

Just received the survey in my e-mail box today. Short but comprehensive. A little confusing in the way the questions were worded and choosing the appropriate answer (on a sliding scale from Srongly disagree to Strongly Agree).

I just read on another board that a member is having a problem with BCBS.
If they do pay how much will I have to pay. I have advantage private policy, 2500.00 ded., 10,35,50. and 50% on brand name drugs. office visit 15,30. I can't afford 1/2 of the cost on this drug. I'll be having infusion at a neuro office. Any help is appreciated. Thanks Sheena