Tysabri long-term use anyone?

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Tysabri long-term use anyone?

Postby VHighland » Sun Mar 11, 2012 10:37 am

I've been on Tysabri for over seven (7) years. I've had almost 100 infusions. I was part of the clinical trial beginning (for me) Aug 2002 and went through to open label in Dec 2004. I had two open label infusions when it was yanked due to PML deaths. The double blind on the study was broken to find out that I was on the drug during the study. I went back on Tysabri April 2007 and have been consistantly getting infusions every four weeks since. I also tested positive for the JCV Dec 2010.

I'm looking for anyone that has been on Tysabri long-term (more than five years) to compare results, concerns, fears, etc. I haven't had a relapse since I went back on Tysabri (knock wood) but my eyesight has been getting worse. It could be due to age (I'm 43) but with MS, you never know what is related.

Anyone out there in my league of Tysabri use? I've like to hear from others. Thanks!
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Re: Tysabri long-term use anyone?

Postby klkm » Fri Mar 16, 2012 6:23 am

I have been on tysabri since the first phase 2 trial and have stayed on as much as was available. my biggest fear is stopping it. klkm
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Re: Tysabri long-term use anyone?

Postby VHighland » Wed Mar 28, 2012 7:39 am

I went to my neuro this month and she stated that if I were to stop, I should expect to have a relapse 3-4 months later. I have not plans to stop it, but there aren't any stats (that I've found) on long-term use. Have you had any problems on Tysabri?
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Re: Tysabri long-term use anyone?

Postby klkm » Wed Mar 28, 2012 12:53 pm

When I stoppeed due to the withdrawl from the market I had a major flareup and am still not recovered to where i was at that time. there is research on the "rebound effect" http://ms.about.com/b/2011/02/09/the-ty ... effect.htm
http://www.news-medical.net/news/2007/09/13/29789.aspx
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Re: Tysabri long-term use anyone?

Postby miloud » Wed Apr 18, 2012 2:20 pm

i have been on tysabri since august 2007.
I almost did 60 infusions. i'"ve been tested positive for JC Virus few days ago.
i don"t know what to do now.
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Re: Tysabri long-term use anyone?

Postby mstotallysucks » Mon Aug 27, 2012 8:56 pm

I've been on Tysabri since 1996, with a brief break when the drug was recalled by the FDA. I tested positive for the JC virus several months ago. At my last two checkups, my neurologist has encouraged me to extend the period of time between infusions to 5 or perhaps even 6 weeks, which he thinks may lessen my chances of contracting PML. That's not an option for me -- I begin to experience extreme fatigue by day 25 or so after my infusion, and the two times that I've had to go 6 weeks between infusions (because of sinus infections) were miserable. I choose to continue on Tysabri until something else is developed that will keep my MS as stable as it is now. I am aware that as a 6-year Tysabri user and JC virus carrrier that PML is a very real risk for me, but it's a risk that I knowingly choose to take in exchange for the health and quality of life that I have today. I think the question of whether to continue on Tysabri really boils down to what kind of person you are: Do you eat your salad first because it's better for you, or dessert first because the roof could cave in unexpectedly? I'm the latter. :) Good luck and God bless.
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Re: Tysabri long-term use anyone?

Postby skyeleenie » Sat Oct 20, 2012 10:26 am

As of November 2012, I will be on Tysabri for 5 years. I tested positive for JCV earlier this year, and I believe that was the ONLY test I have had for JCV since I started the study.

Now that I am positive for JCV, I am at higher risk of developing PML. And, each month I continue the Tysabri makes that risk higher. I recently received a letter from the Stratify 2 study stating that I need to start quarterly blood sampling, a one time genetic sampling and all remaining samples will be held in a lab in storage for future use if and when I develop PML.

This scares me more than you can know. Am I being a lab monkey for them? Why keep me on Tysabri if I have tested positive for PML and why keep me on it unless they are wanting to know how long it takes me to develop PML?
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Re: Tysabri long-term use anyone?

Postby horizon » Sun Oct 21, 2012 6:20 am

skyeleenie wrote:Am I being a lab monkey for them? Why keep me on Tysabri if I have tested positive for PML and why keep me on it unless they are wanting to know how long it takes me to develop PML?

Remember that you are in charge of the situation. Make them answer those questions to your satisfaction or change course to something you're more comfortable with.
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Re: Tysabri long-term use anyone?

Postby Zac » Sun Oct 21, 2012 10:27 am

Hi,
I was recently diagnosed as positive for JCV - I instantly came off Tysabri after only 12mths !! I never felt it was doing me any good - I used to feel worse if anything, i have to much to live for, my fatigue lifted almost straight away !
Good luck to those who it is benefitting.
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Re: Tysabri long-term use anyone?

Postby angrybird » Tue Oct 30, 2012 10:54 pm

Hi,

How bad has your MS been for you to start Tysabri? I was diagnosed about 5 years ago, with just an optic nerve infection that lasted about a month. I was put on Avonex about 6 months after the incident. Since then I was off from the medics due to pregnancy and finally had my first real relapse few months ago. It was very agressive and even after pulse MRI showed active lesions. I was put back to Avonex (had been off from it about < 2 years, pregnancy and breastfeeding included) The latest MRI however shows the lesions grown and more as well have developed. The doctors want to put me on Tysabri. The relapse for me was quite terrific, I lost my balance, felt like a bad hangover...nauseous, head ache, swallowing problems etc. Some symptoms that I could have never even thought of. I am now thinking is this medic really the only and the best option for me? To my understanding, it is pretty much the final option. Do I dare to take the risk of getting on it or should I still try something milder? How bad must you really be to choose that option?
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Re: Tysabri long-term use anyone?

Postby Zac » Wed Oct 31, 2012 7:34 am

Hi AB,
I was encouraged to start Tysabri infusions a few months after being diagnosed, I was diagnosed almost straight after having carpal tunnel symptoms which lead to me having variouse MRI's.

I have now been diagnosed for 2yrs of which I was on Tysabri for 12mths, my symptoms are not as bad as some other MS'ers I know, but my diagnosis was aggressive RRMS and Tysabri was supposed to be the drug to control my condition !!

Due to the complications in my previous post I have now been off All drugs for 4mths, I am still on my feet and getting on with my life the best I can, there are many new drugs on the horizon BG 12 for instance which are less risky as far as side effects go.
Tysabri wasn't for me but I know some who think it great..
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Re: Tysabri long-term use anyone?

Postby Kemond » Wed Oct 31, 2012 9:55 am

I was diagnosed in November 2006. I have been on Tysabri since June of 2007. I just tested positive for the JC virus very recently after refusing to be tested. I have no plans to go off the drug at this time. I hadn't had any symptoms since January of 2008, although now I am experience some left side weakness. I had an MRI yesterday to determine if this is a true relapse.
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Re: Tysabri long-term use anyone?

Postby angrybird » Wed Oct 31, 2012 11:55 am

What about the risk of PML? I think I would feel like playing Russian roulette every time I take the infusion... Is it worth taking the risk of that better than taking the risk that eventually my brain will be destroyed by MS? For now, I don't have physical symptoms, meaning difficulties with my limbs etc, only fatigue, memory issues and some cognitive challenges...well, slight balance issues, but they are not so bad. So, should I still try something stronger than Avonex, but not as extreme as Tysabri? And hope it helps? Or take Tysabri and hold my breath and trust that I cannot be so "lucky" I get PML? Seems like no matter what, the choice is always the wrong one...
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Re: Tysabri long-term use anyone?

Postby suiqui » Sun Aug 18, 2013 4:27 pm

I've been on Tysabri since 2006 and symptom-free except for a 3-month Tysabri break in 2010 which resulted in a major flare-up w/optic neuritis. I took Betaseron before Tysabri, and it felt like I was having flare-ups all the time. I have tested JC positive for the last couple of years, and like a lot of you, I guess I'm willing to live with the risk until something at least as effective comes along. I have heard that the risk of pml seems to decrease after 3-4 years and wonder if there have been any studies about that.
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Re: Tysabri long-term use anyone?

Postby Natali » Mon Aug 19, 2013 2:31 am

in november 2013 i sum up 5 years with tysabri. I am positive to the virus since the 2ng infusion. I now read here it may cause atrophy of neurons in the mri scan and i have grey matter in my last mri scan. i have no alternative. Before tysabri i had 7 relapses per year, bad ones. vomiting, stroke symptoms, amnesia, speech and vision problem. My docs caused me anxiety problems since they want me off the drug. the alternative they give is jillenia. with tysabri i had 3 relapses in 2011 and the rest of the years only 2. i know the disease is progressing but is doing it slowly in comparison to interferon, mitoxandrone and cell cept treatments i had. i must sound a selfish coward but ms with tysabri was calm for me. and now i need to stop. each time i go, docs cause me so much stress. i thought if PML comes along i will deal with it as with any of the other very aggresive relapses i faced. i know i will survice it. what i cannot survive is that after stopping tysabri i may end up on the wheelchair and forget the 4 years i lived normally. it did cause me infenctions too but i managed. there is nothing in the horizon i feel for me. 15 years i wasted my youth and whole life fighting ms. all i know is that when i stop it i will get a very bad relapse and go back to 98 when diagnosed with 7 relapses per year. am 35 in september. all this fight over nothing? for me, after switching to all available treatments, tysabri was a miracle. i cant continue fighting my docs. i believe in God, they think they are god. Any suggestion what to do when i stop it? Above all, financial crisis came along...no drugs come in any more. i pay for an mri scan on my own every 3 months. I know people who began the drug in 2002 are well what i dont know is how they manage with PML, are they positive to the virus? Every summer is hard but we survived the heat and if it comes along we will have to survive PML. I wont permit it to come anyway. I d be grateful for advice and help
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