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.

Hi all,
This is my first time posting here. I started Tysabri 2 weeks ago. I've been dizzy for 2 days now. Can anyone reate?

YAY for # 10, Natalie!! :yahoo:

I'm SO glad that slowing the infusion helped, and that the aftereffects were reduced!

I envy everyone who gets to share with others who are going through the same disease/treatment while infusing. I'm still alone at my infusion center. They tell me there are others who come in for their infusions, but I only met one patient (#2) and he didn't do well on Tysabri and left after a few infusions...:(

Let us know how you feel, and if it helps to shorten the recovery time you need. :)

Hi Stacer, and welcome to NT and to the Tysabri thread! :welcome_sign:

I haven't had any dizzinesss related to taking Tysabri but it cleared up the dizziness I suffered for almost three years before I started Tysabri. Have you spoken to your neuro about it?

There may be others here who have experienced what you are going through and I am sure they will chime in! :)

Hey Wiz!!

You remembered the #!!!

(ROFL here!)

It feels funny following you!

There's times now when I have to look over at the "Wall of Triumph" to remember how many I have had.

(I still keep every box and vial)

Thanks for your reply, Riverwild. Dizziness went away for now. Seemed to only last a while in the morning. I didn't call my neuro. Do you think I should?

I think you should let him/her know if it is lasting more than 24 hours or happens every time you have your infusion.

Glad to hear it has let up for now!

Let us know how it comes out for you. :hug:

Oh YAY Polar!!! :grouphug:

It's sort of like waiting for blast-off, isn't it? :D

I'll be thinking about you! What time do you go?

Try not to be nervous. Be aware of how you feel, but don't stress out.

Drink lots of liquids in the previous 24 hours and plump up those veins. Have something to eat before you go for the infusion to combat any nausea that might happen because of nerves or stress. Get a good night's sleep the night before. Bring something to do for the time you are infusing.

Last piece of advice?--- Let us know how it goes!! We'll be waiting to hear! :)

PE,

My dizziness was caused by the whole vision thing. I had ON as my one and only symptom before diagnosis in Sept. 2004. No pain, just the loss of vision in my right eye.

The next relapse I had the dizziness along with nystagmus and oscillopsia as a result of ON. It kept coming back with every relapse, and I am not sure if it ever really left, since I was relapsing every three months or so. My cognitive function was affected, it caused unrelenting fatigue from trying to compensate (IMO) and when questioned, the neuro I was seeing at the time said the cause of the dizziness and all the other stuff could not be attributed to only the ON, because I had MS!

I started Tysabri in May of 07 and within six months my vision was clear, the dizziness was gone, the nystagmus was gone, the cognitive stuff was gone and the fatigue was reduced. I still have fatigue, along with stiffness and spasticity, but baclofen and provigil relieve them. I was able to cut back on the dose level on both medications since starting Tysabri, now doing half or less of what I was taking before starting infusions. My vision level is back to prediagnosis level. I haven't had a relapse since I started Tysabri. Every MRI since the first one I had at the six month mark has shown improvement, no new lesions, no enhancing lesions and lesions either gone or greatly reduced in size.

In short, Tysabri has given me back the life I had before diagnosis. I truly believe that if it hadn't been withdrawn from market and I had started on it when I was scheduled to in March of 2005, I wouldn't have the spasticity and stiffness and fatigue I am still dealing with. I believe that there is still a chance that I may see ongoing improvement.

I know Tysabri doesn't work the same for everyone, but there's always hope, and it HAS given me back the life I knew before MS. :)

(btw-Bacardi and Coke DOES plump up the veins! I laughed at "better living through chemistry cause it used to mean something totally different to me too!)

Polar: good luck with the Tysabri!! I really hope it's successful for you. :)

RW: slowing down the infusion worked like a charm. Two days later I am just about recovered and only had mild tolerable side effects. Way better than the 5 days of complete and utter misery. I was sick as a dog the last time. So I'm very happy! :yahoo:

My opthalmologist was the doc who originally said "MS"

I went to him after the vision started closing up in my eye. I told him my pupil wasn't contracting and expanding properly. After a few days of tests he said "I think you may have MS" I started laughing because I was sure that it was going to be "brain tumor"

I told him MS was a whole lot easier to deal with. He cautioned that it could be many other things and made me an appt. with a neuro and scheduled the 3 day IVSM. I saw the neuro two days later. He was of the mind that it was CIS and did all the standard tests, bloodwork, MRI, LP, etc. When the tests came back he said he thought it was MS but since I hadn't had more than one incident he was still listing it as CIS.

Like clockwork, within a few months ...relapse...IVSM...relapse...scheduled to start Tysabri...removed from market...Copaxone...no help...and finally ...Tysabri. I did my homework back before it was withdrawn from market, searched out every detail about when they started working on it, who was involved in the development, made myself a pain to those people for MORE details, talked to people in trials, learned way more than I ever thought I would about neurology and science, fought to bring it back to market with a whole lot of other people and I haven't looked back since.

None of it was easy. It took a long time to find a neuro who would prescribe it when it was returned to market, but I was prepared and I found him right in my back yard! He's my partner in my brain health now and I trust him completely. He fills me in on the details that he gets and I fill him in on what I find out. He says when I stop searching for more info, that is when he is going to start worrying about me!

Yay Natalie!!

Praying that each infusion gets easier now!!

Hey, we're on page 99! :eek:

YAY!!

13 more posts and we lock this thread and open TY2!!

Whoohoo! Ty 2!!! Let's have a party!

Polar, I started with optic neuritis also (like RW too). It was mild but always kind of lingering. Since I have been on Tysabri my vision has gotten crystal clear. Sometimes it shocks me...I'm driving around at night looking at signs or walking in the grocery store just looking at stuff and every thing is so sharp--like scary sharp!! I've always had glasses/contacts but don't ever remember my vision being this good, even after getting new lenses. My neuro told me that the top 3 things Ty. was especially good for were 1) eyesight 2) fatigue 3) cognitive issues.

Just reminding...don't go over the 1000. :D

Make a new thread and I'll sticky the new one also. (close the old)


ADDED:

This thread is now closed. It will be left in the Stickies. Here is link to the new thread. http://neurotalk.psychcentral.com/thread84538.html