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Ulcerative Colitis
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Posted 8/31/2014 3:55 AM (GMT 0)
Hey Guys - What are the best, new most exciting clinical trials? I've failed everything and need to try something new. I've failed all the approved meds, and clinical trials such Qu SSI, and worms. I'm not interested in the Chicago stem cell transplant because of the nature of rebooting the whole immune system using but open to stem cell treatments.
Posted 8/31/2014 2:41 PM (GMT 0)
Personally, I think you are having trouble seeing the forest through the trees. Here are some words from your post and siggie:

"I've failed everything"

"I've failed all the approved meds, and clinical trials"

"Diagnosed with pancolitis March 2012"

"Currently, my entire colon has healed except for rectum and recto sigmoid"



Your treatments have made a difference, a big difference. They have not failed. In fact, if one or more of these treatments have gotten you to this point and then you quit, you could get worse and your pancolitis could return. What are your actual current symptoms? I know everyone wants to be in a 100% solid remission but I think some get greedy in this regard and aren't willing to accept that this is as good as it gets. I have never been in remission in the four years I have had this disease but I'm very grateful that I have gotten to the point where I have 2-4 solid stools per day, no blood, no mucus, no diarrhea, and no other UC symptoms and I have done it with no steroids, no immunemodulators and no biologics and I hope to keep it that way. I live an almost normal life, much different than the first three years. It sounds to me like you keep quitting what has worked for you in a desperate attempt to reach full and total remission. This could very well backfire.
Posted 8/31/2014 3:24 PM (GMT 0)
Im confused like Gary, but Im going to assume your sig is out dated and that you are currently flaring. There are a ton of clinical trials out there that you can try. Here is a great site to search, I believe all American based clinical trials are required to register here: http://clinicaltrials.gov/

I am on a clinical trial drug now too. Its called PF-00547,659. It is essentially the counterpart to vedolizumab.
Posted 8/31/2014 6:23 PM (GMT 0)
NO Gary that is not the case - I am not in a greedy state to reach full remission when I am still doing well. I am doing terribly - I go to the bathroom 12+ times a day with blood and pain and wake up throughout the night every single day. I am in terrible shape. My Vedoliuzumab medication has partially worked in the sense that my inflammation in the rest of the colon is microscopic but it has not helped my left side at all which is causing major symptoms. Symptom wise I am almost just as bad as when I had pancolitis.
Posted 8/31/2014 8:04 PM (GMT 0)
That's why I asked what your current symptoms were. Your siggie kind of gives the impression that you are 90% healed. Still, it sounds like clinically speaking you have made a lot of progress since your original dx of pancolitis. The meds haven't completely failed but I can certainly see why you believe everything has failed you so far. Symptoms are actually much more indicative of your situation than some doctor saying or some test showing you are much healed or in "clinical" remission. I have to kind of wonder exactly what it was you did that seemed to heal your colon from it's original condition and I have to kind of wonder whether that treatment was ditched too soon in favor of something else whereas if you had stuck with it you may have continued to make slow but sure progress. Sometimes the colon is just damaged so much that it can take a very long time to heal. It sounds like you have been on way too many treatments in such a short time. This is a disease that doesn't heal overnight. Unfortunately, you can't expect miracles in two months and then on to the next treatment, especially when there are signs that what you are doing is working.
Posted 8/31/2014 9:57 PM (GMT 0)
Did you look here: /www.centerwatch.com/clinical-trials/listings/condition/152/ulcerative-colitis
and of course clinicaltrials.gov/ct2/results?term=ulcerative+colitis&recr=open

I notice a lot of the time the trials are also offered through GI Offices. If you look for GIs in your area and browse their sites, you may be able to find something that interests you and is safe. My rectum is in bad shape too. So frustrating.
Posted 9/1/2014 1:23 PM (GMT 0)
You were on the Qu SSI trail? how did that go?
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