new drug tysabri

i been on every crohns med out there

now the doctor wants me to try tysabri

has anybody took it

    jay

Hi Jaman... I've been on Tysabri, but only for 6 months. It's hard to know exactly what to say about it, because I was scared of it. My biggest side effect was fear! Literally, I did not feel a single adverse reaction to the infusions. They take about an hour (faster than Remicade), after the first when they monitor you for an additional hour. I've failed all TNF meds. I'm currently on Cimzia, but it's not working as my labs report. My CRP is 49.2. I've also failed MTX and AZA. I've failed 6MP once but trying again with anti-nausea meds. (second round of attempts at all meds, basically.)

When I was on Tysabri my CRP was 1.8!! In another month or so, if I fail 6MP again, I plan to go back on Tysabri. There have been no cases of PML within the first year of treatments, all of them falling beyond 18-24 months into treatments. And, the odds are still low, about 1/1000. It is very worth trying, in my opinion, if you are at the end of your choices. I like to think of the odds as this: Imagine you are opening a box of a 1000 piece puzzle. You pull a corner piece. Then you reach into the box of scattered pieces... What is the chance that the first piece you pick up will fit that corner? That's not even completely accurate because the corner has two sides, so the odds of PML are less than the odds of immediately matching that corner piece of the puzzle. And, the nurses in the infusion lab will monitor you closely for safety, as the TOUCH program outlines. That is a good safety net.

The best news of all is that Vedolizumab is a sister drug to Tysabri, but does not cross the blood-brain barrier, so they are finding it to not have the PML risk that Tysabri has. It's expected to hit in a year and a half or so... You should know there is a clinical trial for it right now that you might want to look into. It's a two year open-label (no placebo) after the first two randomized treatments. Of course, you have to go through a wash-out period if you've been on other TNF meds, but it's a great opportunity! (I am not eligible since I've already had Tysabri and was exposed to TB in 1990.)

my joints are hurting all the time

they took me off humria

and hopefuly i can start tysabri in about a month

   drugs dont scare me beues i been on alot of drugs all my life.

                     jay

My sister has been on Tysabri for her MS for 2 years now. She has loved it and hasn't had any reactions to it at all.