Tysabri
 

Good morning.
I am looking for information from anyone with MS that has taken or is taking Tysabri.
I am looking to find out your thoughts and/or experiences with this medication.
I have been on Rebif for 3 years now and still average a relapse 2 to 3 times a year. My doc and I are looking at doing the Tysabri. Before I agree I just wanted to find out as much as I could.
I am aware of the episodes from 2 years ago and understand the happenings that caused them.
I just need information from others about Tysabri.
Before I did 5 infusions of Novantrone, I did not do research or ask others about it. I wish I had. My heart didn't take to kindly to it. I have a low ejection fraction, 3 valves regurgitate, and I have a murmur. All which was not there prior to treatment because of the echo done before.
Any information and advice will be so appreciated.
Thanks
Sheila

The board that I have run into that seems to have the most positive (but perhaps biased) information about Tysabri is MS World. You might want to read their "new drugs" (or something to that effect) forum.

If you do a "search" "Tysabri" on this forum, you should find some information as well.

Good luck!

Cherie

Hello Sheila.
I have experience with Tysabri. I was in the original Antegren studies and was on it along with Avonex as it turned out. I can tell you that after the second infusion of what was then called Antegren, I felt fanatastic. I had much more energy than I've had in years, and it was obvious that I wasn't on the placebo. I was in the study for 18 months until it was aborted in order for Tysabri to be marketable to the general public.

At that time, my husband and I decided to try and get pregnant, so I stopped the Avonex, and opted out of taking the Tysabri. I am still here to talk about it as you can see, and I had a most positive experience with it. We are still trying to obtain a viable pregnancy and I am not on it as of now. Should we opt for another way to have children (adoption), I most certainly will begin taking Tysabri again. I am fortunate enough to live near an MS Center where there is a large infusion room. There were and are many Tysabri patients being treated with it that have had many fine results from Tysbri. I'm sure your Neurologist would be happy to put you in touch with another Tysabri patient if you so desire. I have spoken to several in my area through the Center I go to. The physicians I see have a list of patients who have signed up to serve as advocates for those seeking information about Tysabri.

It is a significant decision to make. If you don't like Tysabri, you don't have to stay on it; just as we were allowed to drop out of the Antegren study if we opted. I support you in whatever you do decide to do.

All the best.
Chris

I was on Avonex for 4 years and Rebif for 2. I continued to relapse and had other interferon-related problems.

When Tysari came back, I busted through the door to get it. I have had 4 infusions and feel better than I have in over a year. My walking, balance and stamina have all improved.

I have been offered novantrone in the past and declined. I feared the exact problems you experienced. I'm sorry for your troubles.

I tell you about this because it shows that I do not take drugs lightly. I researched Ty and felt confident that the risks of using it as a monotherapy were worth it for me.

I have not been disappointed so far!

HOpe my input can be helpful!

Sheila,

Are you saying that the doc that prescribed Novantrone didn't sit down with you prior to this and advise you of the possible dangers of heart damage?

Harry

Hi Sheila..

I have had 5 infusions, thus number 6 the 9th of Febuary,,, do I feel better ?,putting it bluntly no,, but don't let this discourage you from doing it,,

I also was on ReBif, till the insurance gurus jacked the copay up to outrageous numbers..



good luck in any of all decision making..

Peg

Hi Army,

I was diagnosed with a pretty nasty case of RRMS in Sept. of 2005. I was on Betaseron until last November when I started Tysabri. I've had three infusions and if anything I've lost ground on it. My sensory symptoms are a bit worse and the distance I can walk has been reduced by a lot. However, I was going downhill slowly before I started the T so it has a lot of catching up to do. But, I really think that I'm SPMS these days and after dose #4 this month, if something doesn't start to turn, I'm asking for Navontrone. I'd love to do that combo of Navontrone and Copaxone if my insurance will cover it.

I don't mean to dash anyone's hope about T. I'm very clearly in the minority. Most everyone with whom I've communicated who are on it love it.