Tysabri

[asheroonie]

Hello!

I don't see many/any posts about Tysabri here, it's mainly just Remicade/Humira/Cimzia questions. So I was wondering about anyone who might be on it. I know with all the risks it has, it's not exactly the most common treatment. I had never even heard of it until the end of last year, when I had a pretty awful flare up.

I was on Remicade from the time I was 12 until my early 20s, and it worked great for most of that time. When it stopped working, I was switched to Humira once weekly. It helped a little, but by the end of the week I was getting symptoms. I went into remission for 5 years and stopped taking the Humira. Then, during my flare up last summer, my doctor suggested that I start either Cimzia or Tysabri. She was leaning more towards Tysabri and thought it would be the best option for me, but of course I was hesitant because of the scary PML issues. I tested negative for the JC virus, and decided to trust my doctor. I got my first infusion in October.

Honestly, this is the only drug that I've ever been on that made such a HUGE and noticeable difference in the way I feel. I was still experiencing a lot of bloody diarrhea and stomach pains when I got my first infusion. Literally 4 days later, it was like I was cured. Everything was completely back to normal and I felt great! I still do, and I just got my 6th infusion last week

The only side effects I've gotten are tiredness during/after my infusions, and I've noticed that I keep getting colds directly after infusions. It's annoying, but worth it, considering the Tysabri is the only drug I have to take. No more 20 pills a day!!

What are your experiences? How long have you been getting infusions? Any knowledge about longterm usage? etc.

 

[klowee]

I want to thank you for posting this. I am meeting with my GI this Thurs. after failing Cimzia and I am certain there will be discussion about Tysabri. The whole PML thing is just plain scary. I seem to be very good at having very rare side effects to meds and certainly don't want that! Your story has encouraged me, however, to at least entertain a discussion with my physician about it.

Sorry I don't have anything to contribute to your main reason for posting, but am very thankful for your insight!

 

[asheroonie]

You're welcome!! I hope this post can be helpful to more people, because I noticed there really isn't any discussion about this drug in regards to Crohn's.

One of the reasons that my doctor was leaning so strongly towards Tysabri is because of the failure of Remicade and Humira in treating my CD. She said that Cimzia is too similar to those drugs, and that Tysabri works through a completely different mechanism. She had a strong feeling it would work for me, and it did! She also told me that, as long as my JC virus test is negative, there is a negligible chance of getting PML. As a precaution, I have to get JC virus tests done every 6 months. But so far this drug has really amazed me! So I think it's definitely worth considering.

Good luck with your doctor appointment Thursday! Let me know how it goes/if you decide to start the Tysabri

 

[Crohnie2003]

Hi Asheroonie,
I was wondering how you have been feeling. Well I hope.
I am considering Tysabri, but I am JC virus positive. That scares the heck out of me more than if I wasn't. This stuff is scary enough on it's own, but nothing is working for me. My concern is if I have surgery again, what will I take to prevent the immediate attack on my intestines again. This is basically the last drug available for me to try besides Cyclosporine. I am waiting on insurance approval for that, but like Tysabri, it should not be taken for more than 1 year and it is only experimental for Crohns. Just looking for your insight Thank you!