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Tysabri for UC

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Ulcerative Colitis
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Posted 6/29/2012 3:31 AM (GMT 0)
Has anyone been on Tysabri? My GI wants me to join a UC study for Tysabri because Humira has failed me, hypersensitivity to mesalamine, and setroids have not touched my disease. Really sick of being sick.
Posted 6/29/2012 3:46 AM (GMT 0)
I suggest you do a search in the search bar on the upper right side of the page. I have seen tysbari mentioned but I am not sure if there are any active posters who are on it or have been on it, I can't think of anyone. I know tysbari has some scary potential side effects, just read the literature closely and be aware. There are potential side effects with every medication so it's always important to do thourough research. If you don't like the sounds of tysbari, you can look into other trials in your area. There are often trials available that your doctor's office won't even know about. Best to check clinicaltrials.gov. Are you using rectal medications? Have you tried Remicade? 6mp? Imuran?
Posted 6/29/2012 4:42 AM (GMT 0)
My sister has been on tysabri now for over 4 and a half years - she has multiple sclerosis - and she is doing fantastic on this drug. She has an infusion once a month. After the infusion she sleeps for about a day, and then its like someone has hit her with a bolt of lightening - then she slows down about 3 weeks later, as it is starting to wear off.

The big risk with this drug is progressive multifocal leukoencephalopathy (PML) -but there is now a test that can be done to see if you are more susceptible to the condition, looking for the JC virus.

My GI has also indicated that he wants me consider tysabri - as he has had a lot of success with it in previous drug trials. However, at the moment, I am on the Anti-IP-10 antibody trial - so we are waiting to see whats happening with that.

Tysabri has been a lifesaver for her, and if it was available for me (I am in Australia) I would definately consider this an option.
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