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 Images

TY Data to Month 13.JPG (142.5 KB, 107 views)

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...

Katt,

It seems that my only issues have been associated with UTI's, and that is when my MS symptoms beat me up a bit. But, after a few pounds of Cipro, I am good to go and back on track.

-Vic

Hi Katt and welcome to NeuroTalk!

I haven't had a relapse or flare since I started. I can't give any advice as to that, I still feel good.

I do know that even with Tysabri you still have relapses. They are less frequent and milder for most people. Everyone is different. You should talk to your neuro and if you ARE relapsing, a dose of steroids may help. You CAN have steroids, just not long term steroid therapy, such as pulse therapy.

Please come back and let us know how you are doing, ok? I hope things improve for you!

Yes, I just finished an oral course of prednisone. I was hoping the whole time the pills would do the trick so I could avoid IVSM.

Luckily they did, or the Tysabri kept the flare short if not sweet, and I did not need IV steroids. I am coming out out of it slowly now.

Before Tysabri I had 4 MAJOR relapses a year and was worried I would be stuck in a wheelchair...those fears stuck with me and even though I knew Tysabri was not a cure and I would still have exacerbations this first one since has been hard for me to deal with. Even though I was only reduced to cane, then walker, and am now ok without assistance for short periods again.

It is mostly me being silly, borrowing problems and not looking at the big picture. Discounting the positive in my worry and fear.

Thanks for the responses!

Hi Bill and welcome to NeuroTalk!

If you read the whole thread, you will find a LOT of information.

I think that once folks get started and see benefit, they post less frequently and come back when they have problems or questions, or to update as to how it's going for them.

For me, it's been over one year since I had a relapse. I was a serial relapser before Tysabri. The best part of the whole experience for me has been NOT having relapses. In the interim I haven't had any progression either. I have regained my vision ( normal now), balance, no more vertigo or dizziness, no rotating eyeballs, less spasticity and stiffness (although that is still a problem) and less fatigue.

I'm not cured, no one is, but I FEEL a lot better since I started. I will have my 14th infusion this month and I am thankful every day for Tysabri. I love the once a month infusion rather than daily/weekly/etc. shots. I haven't had any adverse reactions or events.

Good Luck with whatever you decide! Come on back and let us know how it goes for you regardless of whether you choose Tysabri or not!