tysabri touch system

They said at the seminar that the patients are not monitored at all like they are in the Touch program. Some of those patients are on other meds that compromise their immune system and shouldn't have been on tysabri. Good luck to all. I hope this helped a little.

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.

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.

Hello, I was wondering if I took tysabri with having MS also RSD because with having the rsd it does weakend my immune system, I don't believe this would be a very wise decision do you?

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.

I had been on Tysabri for 22 month's and just recently stopped. I was wondering if any new info. is out there on the drug Rituxan for MS? I have SPMS with RRMS. I was in a study 3 yrs. ago at UCSF and did really well on Rituxan. However, Rituxan is not an approved drug for MS and at that time my insurance would not cover it so I had to discontinue taking it. Or should I just take a break for awhile and not take any ms med"s?

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.

I think, like Tysabri, it's an immunomodulator. It changes the way my immune system functions rather than suppressing it. I know for sure I have not been warned to avoid sick people.

It is caused by a virus, the JC virus, which is normally present and kept under control by the immune system. Immunosuppressive drugs prevent the immune system from controlling the virus." http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy The estimate is about 56% of all people test JC positive. I just go my test results back yesterday and surprisingly I test negative. It makes Tysabri a very good choice for me and my treatment.

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?

So now he wants to take me off of the Copaxone, I have been on for a month and a half, and put me on Tysabri. I started the application process and now waiting for them to call me and get the ball rolling on that. Now he mentioned that this is the top of the line MS medication so that does give me some relief. P.S. I did test negetive for the JC Virus. Any thoughts, experiences etc on this Tysabri??!!

I have MS and Neuropathy. I am currently on Tysabri. Previously I was on Betaseron and IVIG. When I went to Tysabri my doctor took me off IVIG and now my Neuropathy is worse, my feet and legs are on fire. Does any one know if it is safe to be on Tysabri and IVIG at the same time? My doctor said she would need to consult with other doctors before she would add IVIG to my treatment.

Thank you Sarah. Hopefully you will begin to feel better once you get to start back on the Tysabri infusions.

The research side of my MS Practice has identified a CSF biomarker for disease activity. The research is featured on the cover of this month's Multiple Sclerosis Journal. http://tischms.org/news/tisch-ms-breakthrough-biomarker-research-featured-cover-article-october-2013-issue-multiple I'm a beneficiary of this discovery. I had been on Tysabri for 20 months. At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera.

It is a drug with the potential for serious problems, including once it is in your system it cannot be removed. Even Tysabri can be removed if it causes an adverse reaction. The trial results have been impressive. Another form of Lemtrada - Campath - has been used as a chemo drug for years. I really get heartburn about how the mfg has jacked up the cost of this drug for MS use and has continued to give it to the cancer patients for FREE.

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.

Most DMDs do not suppress the immune system Tysabri can make you more suceptible to the JC virus. Gileyna to herpes. The CRABs do not make you more suseptible to illness. They all have different mechanisms to keep your immune system from attacking your T and B cells. Each works differently. Some block the action, some act as decoys, etc. It is confusing. Each person with MS is different. I for one am pretty healthy from infections.

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.

Tysabri touch system

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