Try not to stress, it's really not bad and most people have no side effects to speak of. I'd recommend being well hydrated before you go, bring a book or be prepared for a nap it will take you about 2 hours for the entire thing.
You go in, the nurse will ask you some questions. Then you'll get your tysabri infused over an hour, then wait for observation for another hour.

Sometime I get tired after my infusion and take a good nap. Usually everything runs very smoothly. I hope it works as well for you as it has for me. Let us know how it goes. Maybe check out the Tysabri group here if you have more questions.

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

Best wishes.

The night before the infusion, my mind was racing, I could not sleep I was so worried about it. But I hoped I would fall asleep. But I didn't. At about 3 am I realized I would get no sleep and went for about 24 hours without sleep. After that I take benadryl as a sleep aid around 10 PM that helps. Now actually for any unusual activity that might keep me awake. I always start sleeping, thinking sleep will happen, and I wait. Sometime around 3 AM I acknowledge its not gonna happen, but it is too late to do anything about it, if I take something I will not wake up in time the next morning...so I am resigned to not getting sleep that night.

Now when there is ANY possibility my mind will race too much to allow more to sleep, I take something at 10PM before it is too late to do anything about it.

Th night before your first infusion is a mind racing night until you feel more comfortable how TY affects you...so you might want to take some type of mild sleep aide, I use benadryl.

I had some serious questions to ask myself before I started It, as it does have potential life threatening risks. I felt comfortable realizing that I needed to live for what this could possibly do for me NOW, rather than the negatives for now and the future it could cause.

I have grandkids that I love to death and I just wanted to do what I could to be here for them in the best form I could be. To me, that meant taking the meds and not worrying about possible risks.

So...even though I just read that a person who died form the Tysabri after 30 some treatments. And another one had taken in the 'teens' when he died from it. So that answers why you have to be 'observed' for an hour after the infusion. They feel that if there's going to be a 'problem' from the Tysabri that it'd happen within that first hour. So there is ALWAYS the 'possible' risk each infusion....but instead of dwelling on that....just be thankful that you are able to take this treatment!!! It is soooooo expensive. If it weren't for medicare and BC/BS, I'd be taking nothing.

I'm happy for your change in treatment. I hope you see/feel some results at some point. I really can't say it has or hasn't been beneficial for me. I know my mind is still leaving me bit by bit, and that is the worst thing for me. It's like 'take away my other abilities, but not my mind!!!!!!!!!" But.....I'm just glad I wake up each day and realize it's a day that's never been used before and it's up to me to decide if I want to worry and worry over things, or just relax and know that worrying is not going to add one second to my life.

Best wishes!

My friend is on Tysabri and she is walking and doing fine. Before that, she was very sick. She is RRMS. I am secondary MS and not a good candidate for the drug. I am also told that Tysabri can only be used for 2 years, because it is really a cancer drug, and after 2 years, you are back to square 1 again. It depends on the individual. It won't work for everyone.

I just want to point out that what cowilliams has replied is gossip and most is untrue.

Tysabri is not a cancer drug, first of all. There is limited experience of its use after 3 years,,,,so where she got her information is totally unexplained and TOTALLY UNTRUE....the experience does not yet exist. Please recognize it as fabrication. In fact if a person has cancer they are not eligible to use Tysabri.

I hate gossip like that spreading untruths. It is true that the risk of PML seems to increase with duration, particularly after 2 years....and there is a rebound affect upon stopping TY that seems to make a persons RRMS more active for a while.. As far as being back to "square 1" ????? I'm not at all sure where she got that one??? I just know she is uninformed about Tysabri.

What is true is.... "It depends on the individual. It won't work for everyone. " As is true with all MS drugs.

When I see obvious false information being posted, I feel I must reply disputing it so no one begins to think it is true. Please educate your self on Tysabri risk and don't take replies like cowilliams has written as true. Take it with the uncertainty she has expressed in her reply & much of it is incorrect....

I guess to be politically correct I should have esaid in Reply #4 and not written the login name. Oh well.
Much of what is written in Reply #4 is not true, please take it with the uncertainty the poster expressed.

PC response.

The rebound effect upon stopping TY seems to lessen after 15 infusions has been done and that too is one of those "It depends on the individual"
type of things, because many stopped before 15 without significant rebound affect and some have had a rebound effect. There is a trial going on to start copaxone a few months before stopping TY, to combat the rebound effect if it happens.

Cowilliams You do NOT stop taking Tysabri after 2 years. I have taken over 2 years and I do not have to stop unless I WANT to stop, which I wouldn't.

I'm not being mean towards you, I just wanted you to know the fact on that aspect of the treatment.

To NNYl1. You missed the key word. I said I AM TOLD this, which leaves room for specualtions. Lola Falano took the drug, became a missionary, was helping people, and was back to normal. But after a few years, she was back to square 1, an was unable to walk or care for herself. Look her up and read her story. Tysabri and Novantrone are both drugs that help cancer patience, but it works miracles on MS patience. Now do your research because I attend a lot of the MS Sessions and have been informed. They key word agasin is I HAVE BEEN TOLD THIS, AND IT DOESN'T MAKE IT TRUE.

CONGRATULATIONS TO Gladlam Saved. You took the risk along with knowing the side effects. Good for you that it is working for you.

I have to wonder....why would someone get on this forum concerning a life changing malady and report ANYTHING that one HEARD or was told......thanks nnyl1 for calling it what it is...
Some persons simply need to make sure their mind is in gear before typing.
I am on tysabri, have been 5 months. No side effects. I also pay very little attention to any so called info by those who obviously have nothing useful to share.

Absolutely not Reply #10. Tysabri is ABSOLUTELY NOT USED TO TREAT CANCER...Stop drinking that juice before you read this stuff!!!

TYSABRI IS A NEW MEDICATION IT HAS NOT BEEN USED TO TREAT CANCER, IT TOO NEW!!! THE MECHANISM OF ITS ACTION IS ALSO TOTALLY NEW. IT A NEW KIND OF MEDICATION It is used to treat MS and Crohns disease & like all, EVERY SINGLE MS TREATMENT, A PERSON CAN DEVELOP ANTIBODIES AGAINST IT, AT ANY TIME. I have no IDEA, what the situation to Lola Falano was....BUT I AM TOO SMART TO MAKE GLOBAL CONCLUSION BASED ON 1 STORY I READ.

Tysabri is not in any way comparable to Novatrone. Please read up on it.

Natalizumab is a humanized monoclonal antibody

http://en.wikipedia.org/wiki/Tysabri

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/about-tysabri/tysabri-effectiveness.xml


Poster #10 I advise you to read about Tysabri since you have expressed such a huge amount of interest in it.

Generic name for Tysabri=== Natalizumab

Drugs nending in -mab are monoclonal antibodies

Today, the monoclonal antibodies (MABs) pose one of the greatest challenges to the people responsible for creating and approving drug names. It's difficult to keep their names simple, informative, and unique, and the problem has led to their tongue-twisting, five- and six-syllable names. Understand how USAN bestows names, and the differences between adalimumab, infliximab, rituximab, and trastuzumab become crystal clear.

All monoclonal antibodies and fragments end with the suffix -mab.

http://www.medscape.com/viewarticle/469843_2


Does Novatrone end in -mab?

Reply #10, I advise yiou to read about the touch program to get an idea of how heavily controlled this medication is bby FDA regulation...it is not even used OFF LABEL for cancer. It is not used OFF label for anything!
It is used for MS & Crohns disease.

thank you everyone who has shared their knowledge about the Tysabri infusions. I appreciate those answers that are clear and informative. Tomorrow is the day I begin this journey. I know God sets our feet on paths of His design, and I know He is ultimately in control, therefore, I am about to begin this journey with His hand in mine!
I have read, watched, listened and read some more, and I feel I have a good idea of how it works for many folks. I intend to be one of the success stories that I will share in regards to this drug treatment.
Again, thank you to all who have shared, especially those who have shared from their own personal experience!
Blessings,
Sherizi