MegansMom wrote:This is wonderful news, the risks vs benefits of this drug are becoming more well known and people are lining up for CCSVI diagnosis rather than this high risk drug.
Finally big Pharma got the message.
scorpion wrote:has been a blessing to many people but yeah there is certainly a small risk of
sou wrote:Everyone is free to participate to the trial, scorpion, including you and me. You can't force anybody take the risk, can you?
Whatever the reasons, patients seem to be afraid of this drug. Personally, I find Tysabri yet another immune suppressant, rushed to the market, inadequately tested with unknown long term complications against a disease never proven autoimmune.
I find the comments about CCSVI completely inappropriate and off-topic to be posted here. Again, whoever feels that this trial should be helped is free to participate instead of blaming people for being afraid and looking elsewhere for a solution.
Wonderful news? Tysarbi has been a blessing to many people but yeah there is certainly a small risk of PML that patients should consider before starting it. Of course once it is discovered that problem with veins will cure the common cold and every other disease under the sun there will be no need for any medication whatsoever!
HarryZ wrote:Wonderful news? Tysarbi has been a blessing to many people but yeah there is certainly a small risk of PML that patients should consider before starting it. Of course once it is discovered that problem with veins will cure the common cold and every other disease under the sun there will be no need for any medication whatsoever!
Small risk of PML? Hmmm....it's jumped by 50% for 2-3 year users using Biogen's own numbers. I think that increase alone has made many potential Tysabri users step back and consider long and hard before starting the drug.
Gee Scorp, you are starting to sound like some of our esteemed MS docs who have made similar kinds of comments about Zamboni and CCSVI.
You do realize only .002% of people on Tysabri ever develop PML? For the people who do get PML it is a horrible experience however it is a rare occurence. I am not promoting Tysarbi or bashing Tysarbi but I am saying it has worked wonders for SOME people. Everyone please calm down. Just because Tysarbi is effective for some people in no way points to the slow and painful death of CCSVI. Geeesh.
Considering that we are talking about GETTING PML and not dying of PML an American has a much, much higher chance of color=blue]DYING[/color] in a car accident (1 in 88 ) than getting PML.
Considering that benefit from Tysabri has been documented and that people on this website have repeatedly said they MS risks are daunting enough that they are willing to accept the risk of......say venoplasty for undocumented benefit.....as scorpion said "For the people who do get PML it is a horrible experience " but PML is a rare occurrence and benefits of Tysabri have been documented.
Lyon wrote:http://tinyurl.com/6kecr2h wrote:The challenge here is that many, many more people have been infected with the JC virus in their lives than will ever develop PML. In fact, one study conducted in Sweden showed that 61% of people with MS tested positive for antibodies to the JC virus – a huge percentage, considering that less than .002% of people on Tysabri ever develop PML. The test is pretty effective if the idea is to prevent all cases of PML by refusing to give them PML, but that approach does exclude many people who would be eligible for Tysabri.
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