Hey RW -- glad to hear you are back to the Tysabri. I think I told you that my neuro does not recommend drug holidays because of the antibody issue (and the researcher who came up with this idea is one of her colleagues in the same clinic!) Anyhow, congrats on #24.

For everyone else -- more info on Tysabri, PML etc. that was published yesterday.

http://www.bloomberg.com/apps/news?p...CpKTo&refer=us

More blogging from the husband of the patient diagnosed with PML about her treatment and recovery-

http://chefarztfrau.de/?page_id=418#comment-22427

translated to:

Am 8. April 2009 um 08:42 Uhr
Hello to TysLand.
Due to the many questions here very briefly and just a little info re. my wife:
According to the circumstances she is doing quite well.
It's all a bit different than expected - physically she is now better than I had expected,
but mentally not quite what I wanted it to be. But we're working on it ;-)
Learn more from me at Easter, I `ll write then because I will have a little more time.
Also, I had a nice conversation with representatives of the manufacturer of tys.
I was pleasantly surprised - more on this also in the coming days.
Happy Easter to you all, avoid any stress with inviting relatives, and so.
You all should prefer to recover and relax, now is the time to do so.
Pit

Hallo nach TysLand.
Auf Grund der vielen Anfragen hier ganz kurz und knapp Info zu meiner Frau:
Es geht ihr den Umständen entsprechend ganz gut. Es ist alles etwas anders als erwartet - physisch doch nun besser als es sich anbahnte, dafür psychisch noch nicht so, wie ich es mir wünschte. Aber wir arbeiten daran
Mehr dazu schreibe ich über Ostern, da hab ich bissle Zeit dafür.
Auch hatte ich ein nettes Gespräch mit Vertretern des Herstellers von Tys.
Ich war angenehm überrascht - mehr dazu ebenfalls die nächsten Tage.
Euch allen schöne Feiertage, macht kein Stress mit Verwandte einladen und so. Erholt euch lieber- jetzt ist Zeit dazu.

It will be interesting to hear what he has to say about her recovery and his communication with Biogen!

Hope everyone's doing well!
Fine here, looking forward to spring! I'm working too much, but that's nothing new!:p

hello i am not to sure how this works but here gos i was told in november i have ms i have started the tysabri infussions just hopeing to talk to some one that has them as well

Welcome to the forum Smurf! :welcome_sign:

I've been on Tysabri for nearly two years now. Things are going well for me since I've been having the infusions. I hope the Tysabri will help with your MS. :)

Hi smurf, I've had 32 infusions :D Tysabri has, what appears to me, halted progression, given me better balance, less fatigue and more stamina. All this adds up to a better QOL :D:D
I've not had side effects. I am very grateful to this med !!!
Linda

Hi Smurf and welcome to NeuroTalk and to Tysabri!

I've had 24 infusions and feel like I've had excellent benefits from Tysabri.

No relapses since I started, vision is back to pre-diagnosis level, no balance problems anymore, cognitive stuff is good now, and MRIs are fantastic!

How many infusions have you had? Did it go smoothly for you?

Jump right in, someone will always answer your questions and there's lots of us here to talk to!

Hi All - Hi River, glad to hear u r still doing good. I'm really down so do not come on much. Typing prob too. #13 last mo coming up on #14 this week. Still in relapse. Had to have 4 iv roids in Feb. They were hel@ 4 me but worth it. I was much worse b4 them. Slowly got better but still can not get out of this attack. Can't do much - maybe the depression too. But not why i came on.

I do have the best neuro in SE & he is published world wide. U know the name but w/not state here. New info on ty per mine.. 4 get the 15 day wait between roids & ty. Some Drs r now doing both the same day. Mine is holding bk to a 3-5 day wait. Then only in extrema but now safe - many do not know & not pub yet. Bio is being careful u know. Mine too but was one u known who helped get ty bk on last. Also, many trials with him including the 1X a mo pill. So, he is all MS. Still nothing they can do 4 me more.

Just wanted to update u on the new ty info I have - since I do not think public.

Wish u & All the best

Glad you checked in Sheena!
I've been wondering how you were doing.

I'm sorry to hear you are still in relapse, it sounds like you just cannot catch a break! It must be very discouraging for you! :mad:

I hope it gets better for you soon. :hug:

Steroid treatment for relapses has always been ok when on Tysabri. You just can't have pulse steroids (repeated monthly doses)
I'm happy that I haven't needed them since I started, but it's nice to know they are available if needed!

Let us know how you are doing!

Sheena,

I hope your relapse will calm down soon! :hug:

I just got home from having infusion #25. Everything went well as it usually does (knock on wood).

I'm taking Provigil every day now, but still only 100 mg. The doctor said I could take a second one about 2pm if necessary.

I'm doing extremely well and I thank God for that. :) It's in part because I have so many happy things going on right now, including the arrival of spring. :)

Hi all,

I just had #10 today. Wow, I can't believe 10 whole months have gone by already. I remember being so nervous when I was getting ready to start Tysabri but I'm so glad I am on this drug. I feel like I am really protecting my brain and that I am being aggressive in stopping this disease.

The infusion was slowed down today to 90 minutes to see if it reduced some of the side effects I sometimes get for 2-3 days after the infusion. Last time the nurse took a shortcut (due to laziness) and only did it over 45 minutes. I felt so horrible I couldn't get out of bed for a couple of days or function in any way. I was so p---ed at that nurse. Today I feel SO much better so I think slowing down is the way to go for me. No side-splitting headache, no body aches all over, very little nausea, and manageable fatigue. I can function until my body recovers in a couple of days.

I sat next to a woman who has been on Tysabri for 2 1/2 years and she said it has stopped her MS from progressing. She only has the use of half of one arm left after living with MS for 20 years. But she thinks she still has some use because of the Tysabri.