tysabri news july 2008

There have since been cases of PML as well as some deaths in patients who were taking only Tysabri at the time. When I started Tysabri in 2008, the estimated risk of PML was 1 in 1000. They knew being JC positive was a risk factor, but there was no test for it at the time. Most estimates I've seen are that approx. 50-60% of ALL people carry the JC virus, as it is actually very common.

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??!!

Very important news about Tysabri. I have to share this news now, even though I am so tired after my second opinion today with a Neuro. Tysabri WILL be withdrawn from the EU market within the next 6 months. Neuro told me that more people have PML than we know, but he would not give me the figures. It was released to Neuros and Dr's alike on Monday - they were told not to give information out to patients!!!!!! People like me who asked!!!

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. In Europe, the program to oversee Tysabri is not as stringent as the TOUCH program is here in the US, and that may play into the scenario. There are a number of details that have yet to come out. One of the patients in Europe is recovering pretty well at this point, and one of them is doing very poorly.

This was another big Tysabri news story at ECTRIMS - researchers in Germany presented results on a blood test that identifies patients who will be safe on Tysabri, even if they are JC positive. http://bit.

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.

He is comparing to a May 2009 done there but by a different reader. Oddly the last one he read on mine was May 2008. It is the May 2008 report where he specifies various dimensions of lesions. He describes them now as larger yet writes "unchanged." I know radios have a language all their own and their use of words is not the same as street English! The prescription just said MS.

I wanted to let all my new friends know that I had my first MRI today since I started taking the Tysabri 6 months ago. I was diagnosed in 1995 and in 1996 I started Avonex- which made me sick everyday for years. I changed to Copaxon in 2000 and I hated it, so I decided to quit all MS medications, except for muscle relaxers, anti-depressants, etc. In 2007, my new neurologist asked me to try Rebif, but my insurance would not pay for it.

//www.nationalmssociety.org/news/news-detail/index.aspx?nid=2525 ---------------------------------------------------------- This one is a clinical study being conducted by Biogen to evaluate the effectiveness of Tysabri in people with SPMS. 800 people are being recruited worldwide to participate in a double blind study (meaning some participants will receive Tysabri and some will receive a placebo and you won't be told which group you are in during the study).

Good news for Lemtrada (alemtuzumab). The Peripheral and Central Nervous System Drugs Advisory Committee has recommended that the FDA approve alemtuzumab for the treatment of MS. As with any of our favorite concoctions there are serious risks, but the reduction in relapse rate seems to outweigh them. http://www.medpagetoday.com/Neurology/MultipleSclerosis/42899?

This release last week announced that Tysabri is now in Phase 3 studies for use in treating SPMS. That has to be good news for anyone following the ASCEND trial. You can read the details at - http://www.biogenidec.com/PRESS_RELEASE_DETAILS.aspx?ID=5981&ReqId=1653040#.TyFoJl4mTgY.

My insurance finally approved Tysabri!! Both neuros recommended it, but we've had issues getting approval. My new one was willing to fight for me. I have my first infusion Monday morning. My son graduates on Wednesday so I'm hoping all goes well!

while on Tysabri. Any news would be appreciated. Also, does anyone report increased fatigue while on Tecfidera? I am over all of the flushing and gastro upset. Just very fatigued - way more than ever before. I am taking Nuvigil and could not make it through the day without it! Be well and try to stay positive everyone.

As I type my 12th Tysabri in fusion is flowing into me! It's hard to believe that it's been a year since my diagnosis. I've learned more about MS and life with a life long disease. I've made a few minor changes to accommodate it, but fortunately my life is largely unchanged. Believe it or not, learning I have MS has explained a lot of seemingly unrelated issues. In that sense my DX came as something of a relief :-) Here's looking forward to 12 more Tysabri juice boxes!

You have to be off of Tysabri for 3 months before you can start it and I would have to stay down there for the week, so certainly have to save up for that! http://photos.al.com/4558/gallery/lemtrada_approval/index.html#/0 It's a great article and happy to share it. And I'm feeling back to normal, now that CPAP is covering the night shift for me.

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?

Tysabri news july 2008

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