I cannot find any posts from MS Forums saying that patients saying that their Doctors involved in the trial are sceptical about Tysabri. I certainly would appreciate ANY links to such posts, so that these comments could be verified or at least reviewed.
Perhaps you weren't looking in the right areas. The following quotes were taken from the MS Foundation (www.msfacts.org
)website in August of this year. This is one of many sites that I visit and is a very good, overall informative site for MS readers.
"I have talked to my neuro about Antegren, as he is involved in some of the studies. He isn't that thrilled with it, because some patients stop breathing after taking it. It has to be administered in a hospital and not a dr's office due to the breathing problems that may result. It's not a huge percentage of people who stop breathing, but my dr said the % is high enough that he wouldn't recommend it to his patients.
He also told me that they didn't know if it would work if administered w/out a CRAB, and so at least for now, they are saying you have to be on one in addition to the antegren for it to show any promise.
I hope they iron out the bugs and this proves to be a promising treatment. Just thought I'd share what my MS specialist had to say about it. Terri "
"Hi everyone - here is an article I came across on Antegren. (I can't remember if I am supposed to just paste the link or the whole thing, so here's the whole thing.) In case you can't or don't want to read it, here's the gist: Basically, Biogen is waiting to release it's clinical data on Antegren until it finds out if the FDA is going to approve it. Sounds a little fishy to me, and apparently also to the author of this article.
Remember how I told you guys that Dr. Low Talker told me that patients were stopping breathing with Antegren and that it couldn't be given in a dr's office, only in a hospital because of the breathing issue? Neither of these is mentioned a lot -- wonder if that's why they are waiting to disclose clinical data?? Or, maybe they are just worried about Avonex marketshare? Guess we'll learn what's up soon enough. Teri"
Now for those who think that I make up my comments please note the doc's name and and contact him if you feel it necessary. I believe he is located in Ohio. This is one of many comments that I have come accross on various sites and simply indicates that there are different views held by some docs about Tysabri.
Again, I don't make this stuff up...only repeat what I find on the net.
If you look at the link supplied by another reader in the another post in this thread re: the concern about the FDA in drug approvals, you will see that all the hype about drugs doesn't guarantee for one second that a drug may be good and safe. We simply don't know enough about Tysabri as yet and it will be some time, after peer reviewing and general population use, that a more scientific opinion can be given.
Finally, on a general point, IMHO it is entirely acceptable to state opinions on the board. But I think we must recognize them as such, and not mistake opinions for facts. For example, I have a number of contacts who are very postive on Tysabri and indeed the FDA approval, label, and substantial published research supports their view. This leads to my positive bias on Tysabri. However, I don't think it appropriate to reference my contacts in support of my arguments. Others think and do differently, and that is quite all right by me, but we should recognise it for what it is.
If a number of people want to be very enthusiastic about Tysabri then that is fine. But don't expect that everyone, including several in the field of medicine, to share that enthusiasm. Everybody has their reasons for their opinions. And because the FDA has conditionally approved Tysabri, it doesn't mean the drug is going to be all that Biogen says it will be. Just read the article from the link that I mentioned and you will see why.