OT: Anyone with MS taking Tysabri?

[disneynutt1225]

Or know someone that is taking it?

My mother just got approval for this drug on Monday and it looks like she'll start getting it in September (they have to wait until her current med is out of her system, which usually takes a month). I've read about it on the internet here and there, but I was wondering if anyone has had any experience with it here.

**I also posted this on the CB, so if it's not allowed to be here mods, please delete.

 

[BlindTyldak]

Is this a new one? I haven't heard of it at all! My DH has MS.

 

[disneynutt1225]

It's the medication that was pulled off the market a year or so ago. It just received FDA approval again in May (or June).

 

[Chuck-PA]

Right now, I am on Copaxone. My doctor has not suggested any other alternatives yet.

I have gone to several seminars on MS. Almost every doctor speaks highly of Tysabri. They seem to call it the Miracle drug for now.

I have met one person who was in on the Test Study for the drug. She felt it worked well for her and was upset when it got pulled off the market.

Apparently, after restudying the drug and the patients who died using the drug and their previous medical history, it is deemed safe and put it back on the market.

 

[Kzajon]

I have my neuro appt on the 22nd to initiate the tysabri. paperwork, mri's etc are all in place, so I am assuming by sept I will start. I have high expectations with this along with much fear (possible pml) but if it does what it says it should do, it will be worth it.

I'm heading to the world Dec 31 - Jan 10, first time since my ms dx. Will definately be using a wheelchair in the parks.

I wish her well

 

[Tosie]

whoops double post!

 

[Tosie]

I have a friend who was on it before they pulled it and she was very disappointed when her neuro took her off. Now she does an IV infusion of a different drug.

 

[disneynutt1225]

Thank you all for your replies.

My mother is so excited that she's finally able to take this medication. She was diagnosed with MS in 1989 and it's been a rocky road for her full of various treatments (Betaseron, chemotherapy, Interferon, among others). She can't wait to only have to get medication once a month, and she has really high hopes for this drug. I hope it doesn't let her down.

I'll keep you guys posted on her progress.

 

[geetey]

Ahh... I would love to only have to get my medication once a month! I take Avonex and hate these IM injections. I did speak to my neuro about Tysabri last October but she said they were only prescribing it for people who didn't have other medical options (whether it was prescription coverage or disease related). My doc is an MS specialist and she said Tysabri looked *really really good* but since my drug therapy was working, that's where I will be staying.

Darn doctors. Wishing the BEST for your Mom!

 

[Nanajo1]

I got some disappointing news last week. I had been following the Tysabri saga and waiting for FDA approval. My neurologist just told me I don't qualify for it. My MS has changed from Remitting/Relapsing to Secondary Progressive. Apparently the drug can only be prescribed to those not needing a wheelchair. It was a blow because I had heard so many good things about it. Good Luck to all who can use it.

 

[geetey]

I am sorry to hear that, Nanajo1. I hope they find a drug therapy that does wonders for you.