Natalizumab -Tysabri

[exit4]

Has anyone been on Natalizumab -Tysabri?
How do you feel? Did it help you? Did you have any side affects?
Humira stopped working for me after 2 ½ years- I developed abscess and fistula, testing for antibodies came back positive. I already tried Remicade – had a reaction during the 3d infusion.

 

[Tgirard25]

I've been a long time Crohn's patient (over 20 years now) and i have done the remicade, even humira. Im now on cimzia. I used to work in a hospital and had access to GI doctors. All of the ones i spoke with and knew on a personal level shunned Tysabri because of the PML risk. This condition will do major damage and even they wouldnt risk it. These are people that became my friends since we all worked in medicine. If i was running out of options, much like i am now, i wouldnt consider it. Do your research. You can find info on the incidence of PML with the drug and whether it is a risk you want to take. Btw PML stands for polymultifocal leukoencephalopathy. Best of luck to you.

 

[kiny]

Like Tgirard said, tysabri is quite a dangerous drug and has been taken out of the market in a number of countries. The derivative, vedoluzimab is supposed to be safer, but there is much reluctance from doctors willing to try this, the risk of infections is very high, because of the way it interacts directly with white blood cells. Tysabri killed quite a number of people during trials and it's not longer approved in many countries. I didn't follow what happened in the US, I think the FDA took it off the market for a while, but I heard some people were on it for other diseases, so I guess it's still allowed in the US.

 

[Tgirard25]

I believe its being used in multiple sclerosis still. Kiny is right. Lots of horrible things in trials including death. Probably why my GI friends refuse to consider it. One of them trained as IBD specialist at Mayo.