tysabri research

As of March 2008, more than 26,000 patients were on Tysabri® worldwide. Since the re-launch of Tysabri in July 2006, no new cases of progressive multifocal leukoencephalopathy (PML) have been reported. PML is an often-fatal viral infection of the brain. Data from the PLEX study suggest that plasma exchange may be an effective procedure for accelerating the removal of Tysabri from the blood if PML infection is suspected.

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.

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?

Friday I called my neuro to find out if they want me to do a washout period on Tysabri, as they are considering me for the new drug out in March. I've ben on Tysabri almost a year and JC+ from the start The nurse told me my test showed 1.03. which means nothing to me. Anyone know anything about this test?

I decided to research Tysabri and it sounded scary, but I was willing to try anything. That is when I asked my Dr. about Tysabri. This is a monthly infusion that last 1 hour. My first infusion made my heartbeat a little fast, but I was nervous. I went straight home after the infusion because I expected to be sick. I wasn't! As the day went on I started to feel like I had more energy, but I was afraid if I got up and started doing things I might end up sick so, I just rested that day.

re right, it did require alot of thought and research and soul searching to make the decision to go with Tysabri. But I'm certainly not brave.....there are alot of people here who I think are brave, and I don't even come close... :) All I did was decide to try the only thing that's really out there for me right now, instead of doing the "wait and see thing", lol. And who knows - it may only mean I was stupid in the long run!

My doctor thinks tysabri would be a great next choice. What confuses me is that all the research I have done seems to insinuate that tysabri is a good choice when nothing else works. I am in great shape and live with little to no daily symptoms. My main Symptom is my left leg dragging after about 20 min of walking for exercise and I haven't been able to run for ten yrs now. Please give me your insight as to why you think I should or should not switch to Tysabri. Thank you!

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.

Something new from the man who developed Tysabri. This talks about repairing/reducing inflammation. http://www.businessweek.

of prednisone being ordered at the time of tysabri due to the action by way tysabri works, and the steriod combo. But, I have not read it. This is one of those things where a doctors orders are called for. Are you scheduled to start infusions?

I have not done a whole lot of research on Tysabri, although I did enough to know that if my MS continues to be quite active, I would rather try it than Noavantrone, which seems to be my neuro's preference. The cardiotoxicity of Novantrone is scary to me, not that Tysabri is without its serious side effects, as you point out. You are definitely not being silly to have such concerns. For now I am holding steady since going on Copaxone three months ago.

My mom has battled MS for over 20 years now and is now wheelchair bound. She has been on every medication available with little results, and has now been on tysabri for almost two years. Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML. I believe she was told the odds went up to 1 in 800.

This test is just another level of monitoring. The research I read says that in patients being treated with Tysabri, these bio-markers, and thus DA, should be at very low levels. In my case the elevated levels indicate that the Tysabri was not as effective as it was supposed to be. My levels were not elevated in previous LP so the Tysabri was likely working for a while. Now that we know it's not we move on to Plan B.

Thanks to all of you that have responded and especially those with direct experience with Tysabri. I really appreciate the input. I went yesterday for the JC assay test so we'll see if I'm negative or positive and go from there. I spoke to the nurse at the MS Clinic and she said that I am fine to go on any of the drugs and it is truly my choice.

I know there are others here who I am overlooking, and my apologies for that. Ren and Quix are also on Tysabri. All of them were helping to lay the groundwork for all the research into safety factors and I will definitely benefit from that. I'll update everyone next week on this adventure. There will be so much to share when I get past Wednesday.

Hi SS - Congrats on your move to Portlandia. Even bigger congrats on getting back in your running shoes! Keeping our bodies as strong as we can is really important. As to Tysabri's healing powers I'm not so sure. I am sure that it is effective at dramatically slowing the progress of MS. I'v had 18 infusions and Tysabri is the only DMD I've used. Since starting Tysabri I've seen no appreciable worsening of my MS. If I can stay where I am now I'll be very happy.

The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.

I took Rebif for 6 months, but was still rapidly progressing, so Tysabri was suggested. I did all the research and reading I could, and then closed my eyes and made the decision to start. I just had infusion #33 last week... If you have any questions or if there's any way I can help, feel free to PM me - I remember how it feels to be standing in your shoes. Take a deep breath... it gets a little easier once the first infusion is behind you...

I was shocked when my neuro suggested Tysabri, but after much research and reading, and realistically weighing the risk vs benefit for me, we decided to give it a whirl. I have since found out I'm JC positive, but am continuing with the Tysabri at this point. The PML risk for me is significantly higher now, since I have also been on Ty for well over 24 months - but at this point we all feel that it continues to be the best option for me. Hopefully Tysabri will do great things for you.

After the new research about Intereffons, i completely understand wanting to start with something else!

Tysabri research

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tysabri