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Tysabri experience? Recent Gi visit

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Ulcerative Colitis
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Posted 3/27/2014 6:28 PM (GMT 0)
Ok so visited GI doc 2 days ago. Still having blood and going about 6 times per day. Most of the times is a very low volume and mostly blood an mucus, Only having real volume 1 or 2 times per day. Doc feels good about this since my last scope looked good with only on bad area near the rectum. I am starting mesalamine enemas(supposed to be twice a day but don't see how I can do them at work).

So we talked about surgery or Tysabri in the future. I did the blood test for JC virus(no result yet). I'm hoping to wait for Vedolizumab or Xeljanz if possible.

So has anyone tried Tysabri? How did it work for you.
Posted 3/27/2014 6:56 PM (GMT 0)
I don't have any experience with Tysabri but I would caution against using this as an option because of the PML risk. I don't think the risk is worth it since PML is usually fatal. I would hold out for Vedo since it does not appear to have the PML risk and it should be available in the summer.
Posted 3/27/2014 6:57 PM (GMT 0)
Have you tried all the basics like remicade, simponi, humira, cimzia? Your sig didn't post so I can't remember.
Posted 3/27/2014 7:15 PM (GMT 0)
I would do surgery more readily than Tysabri. It's great that Tysabri exists as an option for MS, Crohn's, etc, but I bet that a lot of those MS patients would pick surgery over Tysabri if there were such an option available to them.

But yeah, certainly I would do Remicade/Humira/Simponi/Vedo first.
Posted 3/27/2014 7:31 PM (GMT 0)
Knowing what I know now, I would pick surgery any day over the big gun drugs but that is just me speaking from personal experience.
Posted 3/27/2014 7:46 PM (GMT 0)
Yes it is def not a good option I think unless things go really bad. Yes I have tried most of the big guns. Ask about Simponi but GI said no better than Humira.
Posted 3/27/2014 7:52 PM (GMT 0)
Vedolizumab and Tysabri are both anti-adhesion based medications that provide hope, as they are a completely different route of treating uc/crohn's than the anti-TNF treatments which you might have failed. Vedolizumab has a better safety profile than Tysabri, if you can wait for it to reach the market then it is most certainly the better choice of the two. Vedolizumab is site-specific, effecting only tissue within the gastrointestinal tract, studies have confirmed this, so it does not carry the large black box warning for PML that Tysabri does. Tysabri is systematic and carries the PML risk that could effect brain tissue.

Xeljanz is a pill form anti-TNF medication, and if you've failed other anti-TNF treatments I don't see how it would help you. Xeljanz is certainly more convenient, no IV, and no subcutaneous self-injections. That's likely it's only advantage.

Is surgery even an option for you now scum1, since you have been diagnosed with Crohn's?
Posted 3/27/2014 7:58 PM (GMT 0)
I think you should try simponi and decide for yourself. Of course this comes from their site so it's probably quite biased www.simponi.com/ulcerative-colitis-hcp/ might be of interest to you. Did you ask about cimzia? That's approved as well for UC.
Posted 3/27/2014 8:28 PM (GMT 0)
The surgical options for Crohn's are different but they exist. Especially since it's Crohn's, where there are many MORE surgical options, I would schedule a consult.
Posted 3/27/2014 9:10 PM (GMT 0)
I though Xeljanz was different since it is a JAK inhibitor not a regular TNF inhibitor? There are surgical options since my Crohns is only in the colon. I'd end up with a bag though and it might not be a permanent cure. No J pouch. There is also Stelara

iPoop said...
Vedolizumab and Tysabri are both anti-adhesion based medications that provide hope, as they are a completely different route of treating uc/crohn's than the anti-TNF treatments which you might have failed. Vedolizumab has a better safety profile than Tysabri, if you can wait for it to reach the market then it is most certainly the better choice of the two. Vedolizumab is site-specific, effecting only tissue within the gastrointestinal tract, studies have confirmed this, so it does not carry the large black box warning for PML that Tysabri does. Tysabri is systematic and carries the PML risk that could effect brain tissue.

Xeljanz is a pill form anti-TNF medication, and if you've failed other anti-TNF treatments I don't see how it would help you. Xeljanz is certainly more convenient, no IV, and no subcutaneous self-injections. That's likely it's only advantage.

Is surgery even an option for you now scum1, since you have been diagnosed with Crohn's?

Posted 3/27/2014 10:15 PM (GMT 0)
Xeljanz is not a tnf blocker and works differently than remi, Humira and Simponi.
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