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Ulcerative Colitis
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Posted 1/28/2014 10:39 PM (GMT 0)
So I honestly can't remember my last update, probably a few months back. Same old story though, back on prednisone, with a double dose of remicade and 6mp 100mg. Back off predisone as finally symptoms have gone away, but if history serves me, i'll end up back in trouble in a matter of weeks to a month.

I met with a specialist @ Yale New Haven today. We went over a bunch of my labs, my treatment history etc and I was able to pretty much ask him as many questions as I wanted. Right now for the first time in as long as I can remember my labs came back with good results, and my CT scan showed the same. I still see narrow but formed stools, but my BM's are 1-3 per dau.

Overall he feels my GI has done a solid job but there were a few things that Dr Brand would have done differently. Including a longer term dose of prenisone (10mg or less for a up to a year). Since I only seem to go into "remission" with prenisone, he felt this was something to consider should I have to go back down that path. He made sure to mention Vedolizumab but also wanted me to consider surgery. I asked him questions about natural remidies and LDN as well as JAK inhibitors and all in all I was impressed.

I don't know where I will go from there, right now things are ok but I can't say I am overall that confident they'll remain. I can only hope they do.
Posted 1/28/2014 10:50 PM (GMT 0)
"I asked him questions about natural remidies and LDN as well as JAK inhibitors and all in all I was impressed."

What did he say?
Posted 1/28/2014 11:23 PM (GMT 0)
Wow, small world. I have surgery tomorrow at the VA in West Haven, CT. My surgeon is part of Dr. Longo's group at Yale New Haven. Have you consulted with them at all?
Posted 1/28/2014 11:31 PM (GMT 0)
I was recommended to talk to and consider Vikram Reddy from Yale if/when I am ready.

As for your questions gary here's what I can remember from the meeting. LDN in the few patients he tried it with proved ineffective. JAK inhibitors showed more promise in the trials he got his patients in, but were by no means overwhelming with the results. The natural remedies I focused on were diet related, as well as slippery elm root. In regards to the slippery elm root, he's had patients go both ways with it, some feel they improve and others get worse.

i'm going to look through my notes and see if I wrote anything down specifically about them and I will add to them.
Posted 1/29/2014 12:52 AM (GMT 0)
Yea Dr. Reddy was the surgeon at the VA, now it's Dr. Eirnsdaughter (sp?) who's at the VA from that group, she's the one doing my surgery tomorrow. I've heard nothing but great things about Dr. Reddy and that whole group. So if it comes to that at least feel assured that they know what they're doing. Dr. Longo is one of the best IBD surgeons in the country.

Good luck to you
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