tysabri touch locations

Are there any infusion therapy locations near you? When they have people on Tysabri - where are they sending them? They likely do not do the infusions in the dr's office. If you have insurance, maybe you can call them and ask them for approved locations? Good luck on the Gilenya!

Hello all, It just suddenly occurred to me that I hadn't logged in here for ages so I thought I'd see how everybody is getting on. Also, for those of you who knew I was not on a treatment for a long time, I have started Tysabri! My second infusion is on Thursday & I'm daring to feel very positive. I was very surprised by the first infusion.

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.

The Biogen Idec lunch talk I went to today was very interesting and quite a different approach than the usual tons of slides about Tysabri. It focused on what those numbers in clinical trials really mean. Of course it was directed at explaining why the Avonex number and Tysabri numbers are what they appear to be, but it really got me thinking.

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?

My first DMD drug was Tysabri and I have been on it almost 2 yrs, and was JC+ from the start. Tysabri is very good at lowering relapses, but of course, does not correct anything already there. You may continue to have relapses or attacks, it is not 100%, but does a good job. It is not usually a first drug, as you have been told, but your doctor had a good reason or he would not have put you on it As Kyle said, let your doctor know…….

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.

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.

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.

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.

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.

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!

Tysabri touch locations

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