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Has anyone with UC stopped responding to Entyvio?
Digestive Health | Last Active: Jul 7 12:41pm | Replies (60)Comment receiving replies
Hi @mauionmymind, welcome. I moved your post to this existing discussion about ulcerative colitis and Entyvio called "Has anyone with UC stopped responding to Entyvio?" I did this so you can connect with fellow members like @dval @ciaran @magmil84 @msgtrebholtz and others.
You ask "Is this really the time to go slow? ... I feel guilty looking for a 2nd opinion." It sounds like you have confidence in your GI specialist. Before going the second opinion route, might you ask him/her to explain why they feel it is better to go slow and share your wish to attack things more aggressively if possible?
Replies to "Hi @mauionmymind, welcome. I moved your post to this existing discussion about ulcerative colitis and Entyvio..."
I never responded to it. I have been on Humara, Entyvio, Stelara haven't responded to any of them.
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Of all the drugs I was put on (all that you list plus more) none worked except Entyvio , in fact I had bad reactions to most.
Entyvio worked well for about 6 months then tapered off and started the worst flare I ever had.
So what's my advice? In my experience when something didn't work or stopped working I said done, next! Only you can decide when that happens.
Another suggestion I have is Never, EVER think a second opinion is wrong or will hurt someones feelings. It's your body. Each time I got a second opinion I got the answers and information I needed to make an informed decision on my next course of treatment.
For me the battle was lost so I opted for a total proctocolectomy, which was absolutely the best medical decision I have ever made. I got my life back and no drugs. It wasn't all rainbows and unicorns, but looking back at where I was in the summer of 17 to now, I pick now.
Please ask if you have questions. I'll go back through my records and help you with anything I can.