Tysabri touch prescribing
Common Questions and Answers about Tysabri touch prescribing
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.
After being withdrawn from the market, Tysabri was brought back under the TOUCH program (which is strictly controlled by the FDA), and the thought was that if Tysabri was used as a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.
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.
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This update also states that on August 15, 2012 the prescribing information for Tysabri was changed, recommending that patients who have tested negative for the JC virus should be retested every 6 months.
The Multiple Sclerosis Resource Centre website ( a British site) has the number of PML cases and deaths as of August 1, 2012. I have found that this site and a German site seem to always have the most current information.
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.
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 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 have a great concern that my mother’s family practitioner is over prescribing percocet’s to her. Drug addiction runs in our family and we lost our brother to an overdose last year. She had a knee replacement last February and we think he is prescribing these medications for knee pain. She doesn’t go to her orthopedic any more. We found one prescription dated 12/11/12 for 60 pills and then another from the same doctor filled on 12/27/12 at a different pharmacy.
What can we do?
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!
ll definitely be available very soon, but prescribing them will be difficult because of their side effects. Only select patients will get them. I asked if this included those who couldn't tolerate or just didn't do the injections. No, only those with very aggressive MS who haven't responded to the CRABs. But the effects could be worse than Tysabri, and that's what they're finding in the clinical trials. Apparently there are some very serious problems despite all the hype.
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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