tysabri touch prescribing program

So the UCSF trip was great and the specialist and I had a big talk about Tysabri and agreed it is the best treatment for me short term until the MS oral treatment comes out. We talked about the Touch program you have to be involved in with Tysabri and that I would have to come back at 3mo, and then every 6 mo. I thought "great, our friends have a nice house 1 mi from the hospital this will be wonderful" plus I would be able to be seen by the specialists again.

Hello, I have never been on Tysabri but I have infused it many times to many people through the touch program. It is for relapsing remitting more than progressing. It has shown great results and is expensive. The touch program has money available for those who can not afford it. The patients that I have given it too have very little complaints about side effects and I only had 2 leave the program. I had one lady go from wheelchair to walking with a cane.

After being withdrawn from the market, Tysabri was brought back under the TOUCH program (which is strictly controlled by the FDA), and the thought was that if Tysabri was used as a monotherapy, the risk for PML would not be as significant. Unfortunately, this proved not to be the case. At the end of July 2008, it was revealed that there were 2 new cases of PML in Europe - in people who were on Tysabri as their only treatment.

If your first infusion is next week, then I would try and hold off the steroids as long as possible, othersise your Tysabri infusion will have to be delayed. With the TOUCH program they are really careful. Way to go with your gig in S.F - hope it goes well for you.

He decided to send me to UCSF to enter the TOUCH program and take Tysabri. UCSF is 250 mi away and not exactly a place I want my primary care neuro to be. I had a 6 month follow up with my primary neuro that sent me to UCSF and he is acting like he is no longer caring to see me as I am being taken care of up at UCSF. I am in a flare and with Tysabri you have to go through a big process before they decide if you should have steroids or continue Tysabri.

I don't even know where to begin. I went into the TOUCH Program thru UCSF in order to do treatments of Tysabri. For those that don't know, Tysabri is still being closely monitored and you have to be involved in the TOUCH Program and visit the Dr every 3 months for them to monitor your progress for the first year. (so I was told) So that means a 250 mi trip one way every 3 months and if I have a flare I have to go in sooner and be examined before I can have another treatment.

it took all that time to work thru getting approved thru the TOUCH program, and then dealing with all the insurance issues. I just got approved on Monday. It is indeed a VERY risky and controversial medication....I have been researching it for the past 2 months...

Tysabri was re-released to the market, but with strict conditions and monitoring requirements, known as the TOUCH program. Unfortunately, that has not proven to be true. There have since been cases of PML as well as some deaths in patients who were taking only Tysabri at the time. When I started Tysabri in 2008, the estimated risk of PML was 1 in 1000. They knew being JC positive was a risk factor, but there was no test for it at the time. Most estimates I've seen are that approx.

Well, spoke with neuro on phone 2 days ago for over 1/2 hour, she saw me yesterday for about 1/2 hour before my Neuro-Opht. appt. Here is the "final" decision, not really final but a good 90% if everything goes well with insurance... I am going to be starting Tysabri. She is very encouraged with how well I did with the Solu-Medrol this time, that it is even a better indicator of how Tysabri would go. I will be on it for 1 year, then see what is next.

Thanks for the excellent info. In addition, my Neuro said the majority of PML cases were in Europe where the "Touch" program is not used to follow patients. She also said that usually another DMD was being used concurrently with the Tysabri and that further lowers the body's immunity. There are a couple of deaths related to liver problems, however, I read those patients were alcoholics, so there was already an ongoing health issue.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

I am now going in to get on the tysabri after trying all other meds. Just wondering if anyone has heard like I just heard. Not really scared but I was like what the hell else can I have now.

My son just started the suboxin program and he throws up every time he takes on. Why?

I'm just curious .... For any of you who are on Tysabri, I was wondering if your neuros had changed their treatment plans or recommendations because of all the new PML cases and the acknowledgement by Biogen and the FDA that risk goes up after 24 months. I hear some are now pulling their patients at 18 or 24 months. I saw my neuro yesterday, and we discussed it in detail .... we are staying the course at this point, which made me very happy. (I go for #18 in a couple of weeks.

Avonex Plegridy Tysabri Tecfidera It's worth calling about. Here's the number for the correct department 1 (800) 456-2235. They're open 8:30a to 8:00p.

As I type my 12th Tysabri in fusion is flowing into me! It's hard to believe that it's been a year since my diagnosis. I've learned more about MS and life with a life long disease. I've made a few minor changes to accommodate it, but fortunately my life is largely unchanged. Believe it or not, learning I have MS has explained a lot of seemingly unrelated issues. In that sense my DX came as something of a relief :-) Here's looking forward to 12 more Tysabri juice boxes!

t know numbers yet, as nurse wants Neuro to tell me) There was apparently a note on my file that if it was positive that I was not to go on Tysabri. We never discussed this with her, and if the numbers are high of course I would not try it. , but, I know of people who are positive and low numbers and have done very well on Tysabri. I just want o give it a shot. I have to wait now till Wed. when my neuro is in and the nurse will chat with her as to what to do.

Contact Biogen Idec (or your nurse from there that trained you to inject) they have an assistance program. I think that there is another a few other ones but I can't think of them right of hand, but someone else might know and will post them. But start with applying for Bigen Idec's program for now.

He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off! Has anyone gone off Tysabri and had these negative effects?

Tysabri touch prescribing program

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