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Last update: 42 PML cases, 9 deaths

Posted: Thu Mar 18, 2010 2:04 am
by RuSmolikova

Re: Last update: 42 PML cases, 9 deaths

Posted: Thu Mar 18, 2010 4:48 pm
by HarryZ
RuSmolikova wrote:<shortened url>
Interesting how we continue to get this information first from the business world.

I think I read on the Tysabri label that Biogen states PML is a rare disease. Not sure how they can continue to claim that with 42 cases.

Harry

Posted: Fri Mar 19, 2010 9:49 pm
by dino84
pretty sure that my tysabri has reached its end, thinking that ill call to my neuro and just say that i think the risk is just too big for me now...

Posted: Thu Mar 25, 2010 4:30 pm
by facetspera
I'm done. Even though they now talk about the rebound effect (never heard of it when I started) the risks outweigh my benefit. I hate that the new numbers of PML come from the business section not the medical section of the news.
AND I don't think that Biogen will come out with any big test soon to determine who is more at risk to develop PML. Stock prices would drop too quickly!

Posted: Fri Mar 26, 2010 1:23 am
by screamner
You can get information from a german blog, he can't tell his source. But they are confirmed by the business world or biogen, only later.

http://chefarztfrau.de/?page_id=716

Posted: Fri Mar 26, 2010 5:21 pm
by facetspera
Thanks for the link Screamer. What shocks me is that in 9/9/09 the paper released described that higher levels of the JC virus in the blood and urine suggested a greater chance of it getting to the brain and causing PML.
If this was known in Oct.2009 WHY has Biogen still not produced a test to identify those at risk of PML? Money drives so much of the treatment we have available.
I notified Tysabri today I was discontinuing treatment. I got a call from North Carolina, a woman checking to see why I was stopping the Tysabri treatment. The wheels work quickly when you want to stop the treatment.

Posted: Thu Apr 08, 2010 10:48 am
by HarryZ
Biogen appears to be at it again in trying to promote Tysabri to gain MS medication market share while minimizing the dangers of PML.

The FDA has sent a warning to them. Here is a link with the info.

http://www.firstwordplus.com/Fws.do?art ... 54E5B3A505

Harry

Posted: Thu Apr 08, 2010 2:22 pm
by RuSmolikova
HarryZ wrote:The FDA has sent a warning to them. Here is a link with the info.
Harry, here is the original item:
http://www.fda.gov/downloads/Drugs/Guid ... 207686.pdf

Posted: Thu Apr 08, 2010 3:31 pm
by HarryZ
RuSmolikova,

Quite the detailed letter, isn't it! This just adds one more reason why I simply don't like Biogen and their practices when it comes to promoting drugs to MS patients.

It's no secret that Biogen's market predictions for Tysabri are well below what they had hoped. So it doesn't surprise me that they have used the comcasts in question to try and improve their market share. I guess it doesn't bother them one bit to falsely the facts as long as it brings in more revenue!!

I'm glad that the FDA has taken this action against them. Thanks for providing us the link so we can all see how this company operates.

Harry