I was put in the Tysabri trials long befor ethey ever started identifying it as Tysabri....it work very well for me...and then some folks died while using it....and they took it off the test market.
This well over two and 1/2 years ago.
My doctor and I decided together to start me Humira....I have been active with CD for the last two and 1/2 years. By choice I have refused to do the Remicade thing...and it was a hard choice for me to try the Humira....I just have felt that the risked side effects for either one were greater than the chance that the drug would work...the % of folks who have not gotten any help from either drug is pretty high. I know Tysabri worked for me.
So now I am waiting for my loading dose of Humira to get here tomorrow....then next Friday my wife and and I go to the Doctors office and learn the proper way to use the Humira Pen.....MEANWHILE, on Wednesday (Yesterday) I recieved a phone call from the doctors office where I was treated/tested withthe Tysabri. It turns out that Bio-gen/Elan have moved forward and would like to open the trials back up...so they asked all of the doctors who participated before and are willing to do so again to call all of the folks like me who were in the trials and find out if we would do it again.
I told them I was about to start Humira but I would not do so if they wanted me to stay clean so I could I get the Tysabri.....NOW HERE IS THE GREAT PART....They told me it could be a few months before they actually get to the test part...first they have to get the protocols and stuff sorted out and then it could be another month after that...so 3 months minimum. They suggested I start the Humira...if it works well for me...stay on it and forget the Tysabri, but if it does not help me....then 8 weeks after my last injection I can start up with the Tysabri....even if they have already started the trials. So now I have a fallback....this is just too good to be true....and for everyone else...if-when...they release Tysabri, that will be a great day for those willing to take it.
I have been waiting years for this day and that phone call.
dx IBS 1999 UC 2000 CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade. Stopped the Naltrexone July 28th...will start Humira Aug 28th 2006
Crohns is currently active and has been since April of 2005
50 yrs old