I had an appointment with my neurologist yesterday. She is continuing to rx Tysabri.

I'm scheduled to start my first Ty infusion next Friday.. I've known of the risk, however small, from the trials, and decided I could live with that since I haven't been on any DMD's for nearly a year. It concerns me that these cases start showing up after using the drug for an extended period of time ~ they really don't have any information on what happens after 2 or more years of use since the drug is so new..I still plan to start, but I'll keep watching for more information on what happened with the new confirmed cases.
Oh, and something I found slightly amusing (in a dark sort of way), I first heard of this through an artical in the Wall Street Journal, which was mostly talking about the big dip in Biogen's stock when this happened. Yep..As long as we have our priorities straight...

Good luck with the first infusion Polar Express. I go for my second one a week from this Monday. For myself I've decided the risk is worth it at least for a year, maybe two (but I'm not going to tell you I'm completely worry free but I think I will be able to manage it). Hopefully in two years some of the oral medications will be just coming out on the market and we will have a better sense of long term Tysabri use and how many more PML cases there will be. Then I can decide what to do then. Cause the interferons and copaxone are out.

That's kinda how I was thinking, too, Natalie..I'm not even sure it will of any help with the type of MS I have, but my neuro seems to think it may help with symptoms and in slowing progression down, and I'm game for that. If it seems to be working, I'll hang in there for a year or two. They'll know much more about it by then, I'm sure..I hope..

Polar, I just have to say: I LOVE YOUR FUNNY BUNNY SIGNATURE!! It really sums up how my life is going at the moment!!!

Sorry for the brief Hi-jack. It made me smile

I had my MRI's done as a prereq. for another treatment last week. I have always felt I was still in the 1st attack and just have a ton of MS SX.

To my suprise they came back GREAT. All 3 mri's were the same - "no enhancement remaining" and "no new lesions". This is after just 5 infusions. I'm told I could not have got better news at this point. I even have a decrease in prominence on the brain/brain stem mri.

Needless to say, I will not be moving to another treatment unless I fail a test or something. I've got the liver coming up on 6th infusion. I always worry. But, everything looks great now.

I am scheduled for infusion #24... this coming Friday, and that is #24 since it's re-release, I had 3 infusions after approved before it was pulled from the market. I have QOL back and I am doing more and more each month. I would not change a thing at this point.

I look at it this way, all medications have side effects to varying degrees. At this point I honestly feel that there may be more of a chance of becoming disabled or dying on my drive into the infusion center .

~K

MySterious I see you this is your first post but you've been registered on NT for awhile. I don't know if I need to welcome you here but

Thanks for sharing your experience with Tysabri. Sounds like it is working out well for you.

Very sound approach you have there....
I'm not on DMT at the moment but if my situation was different (I'm in a holding pattern with no symptoms at present, knock on wood) I'd probably be thinking along the same lines as you. Interferons and Copaxone are out, I'm waiting for oral meds, but if push really came to shove I might consider Tysabri short term. Enough people have gone 'off' the med with no predictable, serious complications for me to consider it a safe enough - if temporary - lifeboat. Initially, I thought no way - and most times, still feel that way (I want more long term data) but this disease has a way of knocking ones' conventional wisdom right off the block.

MY TYSABRI UPDATE:
1. Walking endurance (time without a walking aid) has improved slightly, though it is stabilizing at a much lower point than was experienced from week 2 through week 8.

2. Vertigo frequency has dropped from 8 episodes per day to 2 episodes per day!

3. Fatigue levels have decrease dramatically since I have been using Tysabri. I do not feel fatigued until about 12-14 hours after I wake up in the morning!

4. Foot-drop levels have stabilized. I still have foot drop and it is still almost impossible to move my left ankle so that my foot points upward. It did get better after the first few infusions, but has leveled off and is stable.

SUMMARY: Tysabri is not intended to "improve functions", but rather stabilize them. However, only one of the four issues that I am monitoring can be called "stable", while the other three are GREAT!

CONCLUSION: So far, so good!

-Vic

Attached Images

Ty Data 16 wks.JPG (148.3 KB, 66 views)