Next week I will get my second infusion of Tysabri.
I was an betaseron, when doc said she did not think betaseron was working for me & I should switch to Tysabri.

I needed to stop betaseron for 30 days before I could get my first tysabri infusion.

I so badly wanted to get experience from other people who had used Tysabri, I started a group fot Tysabri Users, so I would have a place to ask any stupid question I had.

http://dailystrength.org/groups/tysabri-users

Be sure to expand & read all the new articles...it has links to Biogen Video's on Tysasbri infusions & links to member introduction & the members months of Tysabri Use.

In the general section, there are alot of ? and I posted about Biogen's Peer-Peer Tysabri Teleconfrences. The first was lasyt wed. I will a reminder for the next one wich will be Thur 11/13. You might be interested in that.

My mom was on Tysabri for about 8 months. She was taken off of it because it just wasn't doing the job for her. She liked it though just because it was only once every three weeks. but what can you do..
Give it a try, and see how it works for you. It's a really good drug, one of the best I think. good luck with it.
take care

Hi - I've been on Tysabri since Oct. of '06. I have not had an exacerbation since. I asked my doc about PML risk and he said it was a one in 16,000 chance. He is a famous expert on MS here in the Pacific Northwest and heavily involved in research on MS. 1 in 16,000 are pretty good odds. I feel okay about it. I don't know any side effects, sometimes again causes some things I have; occasional hand pain (I have to grab the hand to make it stop), creaky joints, but I have arthritis in the hips. All in all, I don't notice many side effects. I have had about 25 infusions by now. I just hate the two and a half hours I spend at the infusion room every month, but it beats the daily or thrice weekly infusions (or even the weekly ones - I've been on Avonex, Betaseron and Copaxone).

I'm surprised to hear someone said Tysabri wasn't working for her. It's twice as effective as the CRAB drugs.

I had a typo. "Sometimes again" should read, "Sometimes aging".

I have been on tysabri for 2years now and at first, i had a couple of reactions to it (i would get a hot flash, my face and chest would turn red and hot and i would have slight trouble breathing. they told me to take benadryl 1 hour before my infusion and it worked. I have had only 1 exacerbation while i have been on it (right now) but for the most part, it has kept my mobility stable and i used to use a cane and sometimes a wheelchair before and have not used them since! I have a horrible pain syndrome that i put up with but they say that there is nothing they can do for that other than opiates and swimming... so for the most part, i would say go for it! i have been on all of the other immunomodulators out there and this is the best one so far. good luck and keep a positive attitude.

So far Tysabri is great for me. I will have my 6th infusion on Thurs. No sides at all for me except sometimes (but not too bad) my head itches a week after my infusion and lasts for another week or so. I think the hardest part for me is since I cannot drive my husband must drive me to the Procedure Center OR I can take the Access Van. I prefer hubby cuz the Van drive ends up being an all day thing most of the time. Still it is nice to have that option.
I tried Copaxone AND Rebif prior to Tysabri. I would pick Tysabri over both of those drugs every day !!
Good luck and keep us up to date !!

I don't like this PML issue.

http://www.msfocus.org/online_newsDetails.php?ID=235

i was the same way...it's a big commitment...and like you i was very emotional about it!

if it turns out you have to get off the betaseron and begin tysabri, i hope you love it as much as i have!!!

wishing great success!!!....xoxokatie

I love my Ty!!!!

Kitty: These answers are very helpful to me! I am so glad to hear that so many people find this drug at least somewhat helpful. I was wanting to go on it, and when my insurance changes in January, I willl go back to my old neuro and maybe he will let me on it! butterflyz

I have been on Tysabri now for 9 infusions. I had been on Copaxone and then Rebif. I have had no alergic reactions with the possible exception of some annoying, minor itching, but I am not positive it is a result of taking tysabri.

I know a lot of people on Tysabri and all but one are doing well on the treatment. I know one young women who had to go off because it would deplete her of energy for 3 days after each infusion.. I have not heard of anyone else with this problem.

I also have a lot of anxiety and finally went on Effexor and it has helped a lot and it did not kill my libido or my ability to think or work in anyway. Just kind of mellowed me out.

Hope this helps - Good luck and God Bless
Tom

I get my 11 infusion next week. It has been wonderful. I can stand again. After all the years on Copaxone & steady worsening, it is nice to finally have something that is reducing the number of lesions.

I stopped Ty after 4 treatments, couldn't even move anymore from pain in body, joints, etc. Slowly getting better, its not 6 months since last infusion.

Had my first infusion this week. It was much easier than I expected - mostly my own terror. It's too early for me to give opinions about how it's working for me. No one likes the PML issues, of course, LarryLDN - I don't like them either. But I'm taking the chance with Tysabri because other treatments have not worked for me. I think if you have reached that point, it has done wonderful things for many people - it's a personal choice and I say go for it!!!