tysabri touch protocol

does anyone have any experience with Tysabri and having surgery? I've bee on Tysabri for 10 months and am now scheduled for major neck surgery. Not any articles about it. any help would be appreciated.

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.

There has been some recent discussion about LP's as part of JCV/PML detection protocol. I am having a blood test, brain MRI and an LP every 6 months as part of my Tysabri treatment. This article from the Journal of Neurology discusses this protocol. http://www.msrcny.org/sites/default/files/articles/JCVpaper.

My mom has battled MS for over 20 years now and is now wheelchair bound. She has been on every medication available with little results, and has now been on tysabri for almost two years. Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML. I believe she was told the odds went up to 1 in 800.

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.

So the question has to asked of your neuro. Tysabri is only given under the surveillance of the TOUCH program. One of the requirements is no other immune-suppressing or modulating meds are to be used. High dose steroids are VERY immune suppressing, but I don't know the specific rules. So, your neuro has to check this out and decide. I suspect you cannot have them within a few weeks of the Tysabri infusion. I am not 100% sure of all this, but it should be checked out.

So I went to another expert who agreed with the first doctor that treatment was called for and recommended Tysabri or Copaxone or Gilenia. I chose Tysabri because both doctors recommended it. I decided to stay with the second doctor because he was much more informative and helpful than the first although he works alone. The first doctors was a bit brusque. However , it has been almost 5 weeks since the paperwork for the Touch Program was started and i have heard nothing.

Of course you're a lab study - unfortunately a Tysabri TOUCH study isn't going to give you the kind of neurological care that you're needing. And it sounds like the people you've been seeing don't know much about MS, which is unfortunate. That the study excludes spine MRIs is also unfortunate - you'd think that they would include that information. But I can understand why.

Hi and thanks in advance. I got financial assistance from Tysabri, but after having 3 infusions, finally got an invoice for the first infusion. My responsibility is over $350. No way can I afford that every month. Avonex cost me around $25 a month. I was on that for 14 years. Not so sure about this whole thing yet. Does anyone have any ideas about the best way to get financial assistance: from the hospital where I get my infusions or directly from Tysabri?

The MS center that does the Ty infusions is considered a TOUCH center and they have a specific protocol they follow with every infusion. One of the tests is for the JC virus. If it is positive then they will not do the infusion as it increases your chance of PML regardless of the number of infusions you have had. My neuro wants big guns since I am on a steady decline. I actually want the Tysabri even though it scares me.

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.

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.

Well I saw my neuro today and after a lengthy discussion with both him and the nurse, the subject of UTI did not come up! There was so much else to cover, I completely forgot to ask and they apparently did too. Argh. Why didn't I write it down? No 12 year old resident this time lol so it was nice to get to know my neuro better. We had a long discussion about changing treatment.

Many people who come off of Tysabri have been put on Gilenya pills. You would have to get checked first for heart issues, immunity to chicken pox and maybe one or two other things, and have an eye exam to rule out macular edema (swelling). Then of course you have to get approval from insurance or proof that you could afford the pill. Once that happens, you get scheduled for a 6 hour appointment for your first pill. They keep you on an EKG to watch for lowered heart rate.

m asking is because my allergist has been doing some digging in order to develop a type of protocol to perform the challenge on me. She has not received any guidance from the company. She has asked me if I could get the 44 mgs and they would inject it under the skin, but they would also use some other solution I think, but am not sure exactly how they are going to do it and don't know enough about this type of testing and false positive results, etc.

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.

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.

I feel so guilty that I am not able to keep in touch like I used to with all my friends here. I barely keep in touch with anyone right now, so it's not just you guys, lol. My regular email inbox is always full of people I owe letters to. I always feel guilty, cause I feel like no matter what I do, I am letting someone down for some reason....do any of you feel like that sometimes, too?

I know it's been awhile since I've been on here, but wanted to tell all the great people who gave me their support THANK YOU from the bottom of my heart. I could say thanks and all the nice things in the world but it wouldn't do the way I feel for you all justice. Life has turned around for the most part for me. Other than missing my kids everything else has changed drastically in life.

I am due for my tysabri on tues and if I have to call the dr tomorrow she will postpone my treatment and want to see me first. UGH!!!! Ok I'm done venting.

I just want everyone to know that for every good story about tysabri there is also some bad ones. And for those of you that don't know: there has been two more cases of PML ( a potentially lethal brain virus) from tysabri. I knew that risk when I took the drug, but after having such a bad reaction the word "risk" takes on a very REAL meaning. The risks are REAL. Be careful. Be educated. Be proactive about your own health because no one is going to look out for YOU as much as YOU.

I was on tysabri for 9 months till my liver decided it didnt like it anymore but I loved the drug went from using a cane to nothing. I just started gilenya yesterday so jury still out on that. Its been 7 months since being off therapy and feel like crap the fatigue is overwhelming and my balance is bad dragging foot again so should be using cane again just not mentally ready for it. if your jc neg I would go for the tysabri as long as insurance covers it 1 hr a month and done so easy.

I was on the panel last summer to critique the TOUCH protocol. Changes were made. I know that *I* was not a one person campaign that got it done, but I took a survey and it was presented at the conference. It did have an impact...and I encourage people to contact Biogen directly with their concerns and problems. I pass out the Marketing Rep's email when necessary! I have no shame....;-) As for my experience with Copaxone -- it was not a good one!

Tysabri touch protocol

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