NeuroTalk Support Groups - Who at Braintalk is on Tysabri?

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Who at Braintalk is on Tysabri? (https://www.neurotalk.org/multiple-sclerosis/1470-braintalk-tysabri.html)

Harry Z

09-25-2006 08:40 AM

Quote:

Now I am just waiting for the infusion center to get it's act together and start scheduling infusions.

Once you get your first infusion I was wondering if you could let us know what the total cost of it was. Some insurance companies are balking in approving Tysabri for their customers with cost being one of the factors.
Thanks.

Harry

Loric0719

09-25-2006 11:58 AM

I had my first infusion 9/11

I'm feeling good and wonder after my 2nd if I'll be able to walk better. Less walker.

cherie60

09-25-2006 02:44 PM

I am having my 2nd Tysabri infusion in two weeks. I am on medicare and a supplement and didn't have any problem getting it approved. It was paid in full.

I am pretty happy so far. I did have four days of a headache and some increased bladder urgency a week after the infusion but it might have nothing to do with the Tysabri.

I feel like I have a little more ambition then I did. Things don't sound quite so overwhelming. I am looking forward to seeing what happens after the next one.

BBS1951

09-25-2006 05:27 PM

Quote:

Originally Posted by september1968 (Post 12660)

Yes..strange thing is that the breathing issues subsided for a while.
New batch..more problems. Doc says go off for 3 months & see if the issues resolve... if so, then I start C.

He asked me about T, I said no way.. the people that died were on A & T.
He said well you would go off A.. I said it would have to be years before I was off A & willing to try T.

Are you still slowly getting better?

I PMd you about me.

I hope that your breathing resolves off of Avonex. Copaxone sounds like a good choice. I"m off of all MS drugs.

I am so cuirous about Tysabri, but I'm not bad enough to try Tysabri. Plus, I dont trust Biogen to be honest about Tysabri side effects. I am so hoping that some of our fellow MSers who are doing poorly will do well on Tysabri though.

wannabe

09-25-2006 10:47 PM

I too really look forward to any updates from people on how Tysabri is working for them. I hope it proves to be a really good treatment option for us.

marcstck

09-26-2006 08:03 PM

Had my first infusion yesterday. Have had some flu like symptoms, was told that could be expected. No benefit yet, but it's only been a day.. I'll post with updates...

1942Linda

09-27-2006 01:28 PM

I Am Ready!!!

:) i've been approved but have to wait another 6 weeks (from total 3 months) to get oral cytoxan out of my system.

cant wait. just got thru 3 day ORAL SOLUMEDROL to get over bad flare brought on by stress of travel and mother's death and all that goes with that. happy to say treatment worked and systems back to usual bad but tolerable.

cant wait to get started on Tysabri. have lost too much already. left RRMS years ago. Specialist says i am great candidate....i am excited to get going.

BBS1951

09-27-2006 05:06 PM

Rest up,, Linda. I am sorry about the loss of your mom.

lady_express_44

09-30-2006 01:25 AM

Hi Cherie60!

Are you still on LDN too?

Cherie

cherie60

09-30-2006 02:25 AM

Quote:

Originally Posted by lady_express_44 (Post 16485)

Hi Cherie60!

Are you still on LDN too?

Cherie

Yes I am my neuro is fine with it thankfully! :D

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