Tysabri long-term use anyone?

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

Re: Tysabri long-term use anyone?

Postby Natali » Mon Aug 19, 2013 3:13 am

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.


my last research found no evidence after 5 years with tysabri. i know there were cases of PML after 4 years. The lady who got pml started tysabri with me in november 2008. she survived it but is still in germany not that well. all i know is that there is nothing in each one of us to determine the risk. each individual reacts differenlty i guess. if it is luck or not, i know not. If only they could determine something common in the patients who got it the rest of us would know. Previous treatments do interfere. in my case i had similar treatments like metoxandrone and cell cept. i think if we avoid the fear we win. and as i read on top, i guess i agree with the person who didnt want to check for the virus. we know how to control our bodies much better. but we always remain numbers for statistical data. what i know is that the 2002 people who began with it are ok, but i dont know how they dealt with PML.
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Re: Tysabri long-term use anyone?

Postby odin1243 » Fri Apr 20, 2018 2:58 pm

I have been on Tysabri since 2008. I have tested JC virus positive. My Neuro suggested I get my infusions very 8 weeks instead of four weeks to reduce my risk of getting PML. I have been doing that for a while now, and I'm doing well. I plan on staying on Tysabri and feel the benefits of being on Tysabri outweigh the risks.
I had tried Copaxone and Avonex before starting Tysabri but could not tolerate the side effects.
I am hoping I can continue to staying on it as long as possible.
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Re: Tysabri long-term use anyone?

Postby sregelman » Thu May 03, 2018 12:52 pm

I started treatment on Tysabri in 2005. I’ve been on it ever since, but I am only receiving injections bimonthly. I have had no new flares, but I have had one new lesion recently. and I’m JCV+ and not concerned about it.
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Re: Tysabri long-term use anyone?

Postby NHE » Fri May 04, 2018 12:20 am

sregelman wrote:I started treatment on Tysabri in 2005. I’ve been on it ever since, but I am only receiving injections bimonthly. I have had no new flares, but I have had one new lesion recently. and I’m JCV+ and not concerned about it.

Welcome to ThisIsMS. It's good to hear that you're doing well. Have you had any changes in your physical status either good or bad?
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Re: Tysabri long-term use anyone?

Postby odin1243 » Fri May 04, 2018 1:42 pm

I have been on Tysabri since 2008. I am JC positive, but have elected to stay on Tysabri since I have been doing well. My neuro suggested I get my infusions every other month to reduce the risk of developing PML, so that's what I have been doing for a a little over a year. I feel the benefits of developing PML outweigh the risks.However, I do feel this is a very individual decision and one the patient should have the final say as to whether to continue on Tysabri.
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Re: Tysabri long-term use anyone?

Postby odin1243 » Mon Jun 04, 2018 1:19 pm

Thanks everyone who took the time to reply. My doctor recently contacted me to ask if I wanted to continue on the Tysabri. This was after I had some lab work and another test fo the JC virus. She reminded me that since I have been on Tysabri since 2008 my risk is now 1/100 and will continue to increase the longer I am on it. She also said there is not a lot of data available, as many people who test positive for the JC virus elect to discontinue the drug. It's pretty scary to hear that. I told the doctor that I would like to discuss this further when I have my next visit. I also mentioned my concern for relapses if I discontinue Tysabri, as well as concerns for risks of alternative medications. As I said previously, I have done well on Tysabri and I am reluctant to discontinue it. This is not an easy decision.
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