Tysabri touch registry

Common Questions and Answers about Tysabri touch registry

tysabri

Avatar f tn 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.
294425 tn?1288528395 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.
738075 tn?1330575844 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.
1702168 tn?1307910841 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.
Avatar f tn 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.
4461995 tn?1357955108 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?
Avatar f tn 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.
Avatar f tn 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.
Avatar f tn 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.
294425 tn?1288528395 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?
989689 tn?1333548520 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.
Avatar f tn 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.
Avatar f tn 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.
382218 tn?1341181487 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.
294425 tn?1288528395 OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :) He explained alot about Tysabri - truth vs hype.
Avatar m tn I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.
294425 tn?1288528395 I'll start it off... I was diagnosed in Feb. 2008 Was on Rebif for 6 months prior to Tysabri. I have been on Tysabri since Oct. 2008 - will get infusion #37 next week. Both my neuro and I do feel it is helping. I still continue to have issues related to MS, and some have started while I've been on Tysabri, but we feel it has definitely slowed the rapid downhill slide I was on prior to starting it.
933846 tn?1353452448 I am only allowed to buy 5 more things off of my registry and then I cant touch it until after the baby shower which will be in August. I would go ahead and register now, so that if you choose to change anything on your registry you will have time before you have a baby shower, and plus it's super fun =0) P.S.
Avatar f tn How far along should you be before you start your registry? I have family members wanting to throw me a shower, but at only 21 weeks im not even sure where to start. Any ideas where to register in the midwest?
Avatar f tn 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!
Avatar f tn 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.
Avatar f tn Does anyone know or have any experience with the effects of tysabri on bone surgery?
645390 tn?1338555377 ) Think I am sticking with Tysabri for now, seeing neuro as well tomorrow and I know I will get a good report. Having a great summer with my boys... Just a quick update. I haven't been on the boards for some time, not too much extra time right now. I imagine September I will be back more often. (It is strange, i rarely think of MS anymore. I would love for that to stay.0 The only thing that has been increasing is Migraines.
1337734 tn?1336234591 Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. 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!