Tysabri one touch
Common Questions and Answers about Tysabri one touch
tysabri
The only people authorized to administer it have undergone training and are TOUCH centers. There are also hospitals trained in it. My neuro is one but my summer TOUCH center is a hospital and is in their outpatient section.
I don't think I would trade procedures, even being JC+. Every drug has a risk and PML is the only one associated. No one on ONLY Tysabri has come down with PML, only those on TWO or more drugs.
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.
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.
After being withdrawn from the market, Tysabri was brought back under the TOUCH program (which is strictly controlled by the FDA), and the thought was that if Tysabri was used as a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.
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.
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 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.
Has anyone ever had an occasional "off" day with Tysabri? I went for my infusion yesterday and usually they don't bother me at all but spent the rest of the day on the couch, with no energy and all day today with none.
Can't remember having one like this in quite awhile and just wondering if anyone else had this occasional problem. Most of the time, its just like I got a saline injection!
Despite all the warnings and scary patient information, it went well. Not one side effect yet. The most annoying thing is that time moves slowly, and a 2 hour infusion is boring as all get out.
The nurses at the Infusion Center are very impressed with the med. One patient in particular was in a wheel chair and improved enough after 18 months to go back to work as a carpenter.
When Tysabri first came on the market after clinical trials, there were 3 deaths from PML and it was pulled from the market. All 3 patients had been on one of the first line DMDs while they were also taking Tysabri. The thought at the time was that if patients took Tysabri alone, PML would not be an issue. 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.
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.
Where I live, there is only once infusion center that is approved by the TOUCH program to dispense tysabri. It is a cancer center owned by a large corporation. They first told me that it was going to cost $400 a month to get the infusion (out of pocket...after insurance and up until I met my max out of pocket with my insurance). Well, that was a lot of money to me.
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