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Natural Crohn's disease Clinical Trial

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Crohn's Disease
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Posted 6/23/2013 12:54 AM (GMT 0)
Hi all! I haven't been on in awhile. I have been doing pretty well. Still on Humira which keeps me about 90% well, with a minor flare every 6 mos or so. Not perfect, but still pretty good quality of life right now. I take Humira weekly and the doctor has been wanting me to try to go down to every 10 days or back to every 2 wks, but everytime we try symptoms come back.

So to the reason for my post. I saw an ad on TV for a current Crohn's research trial for a natural treatment. I went to the website to fill out the questionnaire to get more info. It says the study supplement is made with Ginseng, Processed Ginger, Sichuan Pepper, and Maltose Powder. There is a site right in the city I live and some of the trial sites listed in other cities I am familiar with and they are reputable Universities or GI practices.

Anyone else heard of this trial? Anyone gotten additional info? Opinions?
Posted 6/23/2013 2:18 AM (GMT 0)
Well I found a little more info on the clinicaltrials.gov website. It is an herbal medication that is already approved and used in Japan. I am probably out, it says you can be on stable medication but not anti-TNF so Humira has me out. At this point I don't think I am willing to give up my 90% symptom free quality of life to stop Humira for 12 wks to qualify. But they are doing it in 28 different sites over different states if anyone is looking for another option! Below is what is on the government website.

Tsumura's TU-100 is a modern herbal product that has been approved as a prescription drug in Japan. Several lines of evidence indicate that TU-100 attenuates intestinal inflammation in Crohn's disease by increasing intestinal blood flow and stimulating a protective lining of intestinal mucus which produces an anti-inflammatory effect. TU-100 may attenuate pathological changes in the intestine and reduce symptoms in patients with Crohn's disease.
Posted 6/23/2013 2:31 AM (GMT 0)
Hunh, that looks pretty interesting. It's not offered in my area or I'd be tempted to sign up. It's an interesting mix of herbs. I wonder why they are throwing in the maltose powder. I'll have to try and remember to look for this later to see the results.
Posted 6/23/2013 11:46 AM (GMT 0)
Could you post the website for the study?  There are over 500 clinical trials listed for crohn's at clinical trials.gov.  Don't know which is the right trial.  Thanks.
Posted 6/23/2013 12:59 PM (GMT 0)
Website I saw on the advertisement and the one to submit prescreening questionnaire.

http://www.naturalcrohnsresearch.com/

The info from .gov

http://clinicaltrials.gov/ct2/show/NCT01388933


I still did the prequalifying survey so I can talk to the clinic to make sure I don't qualify because of Humira. IT is a shame because the hospital/clinic it is at is literally one mile from my house!

Post Edited By Moderator (CrohnieToo) : 6/25/2013 9:23:20 PM (GMT-6)

Posted 6/23/2013 2:38 PM (GMT 0)
Oooh this sounds right up my alley! I will check to see if they have a trial near me. I have been off Cimzia for 6 months due to surgery and I have been having a heck of a time so I will check into this. Thanks!
Posted 6/23/2013 2:54 PM (GMT 0)
It wouldn't let me sign up because the testing site is too far from me even though I am willing to make the drive as long as it is not an ever day thing. Oh well, I will just have to follow along to see how this trial pans out.
Posted 6/23/2013 10:48 PM (GMT 0)
Well nuts, it seems like any of us interested are all out of luck for one reason or another! It would be cool if a couple folks from this board were involved and could directly post their experience.
Posted 6/25/2013 12:13 PM (GMT 0)
I filled out the questionnaire and I passed. But then they give you the consent forms and a form for the meds you are on.

I didn't fill out those forms because there is no funding or support for room and board.

They want you out there twice, for up to 9 days and then a third time for 3 days.

Between the flight, hotel and food.... Figured it would cost too much.

They emailed me about some details and They did mention that they are applying for assistant for the participants.
Posted 6/25/2013 1:51 PM (GMT 0)
Hunh. Looks as if I might qualify. The closest testing site is about an hour away.

Interesting.
Posted 6/25/2013 8:24 PM (GMT 0)
I may instead try to call and speak to someone since it said I was not close enough. I sure would like to be in this trial!
Posted 6/25/2013 9:33 PM (GMT 0)
Hmmm, it said I passed but I didn't get any additional paperwork to fill out. I have had a missed call twice while at work, maybe that was them?
Posted 6/25/2013 9:35 PM (GMT 0)
They called twice to my house as well. Wasn't home.
Posted 6/27/2013 9:37 PM (GMT 0)
Well one of the nurses finally got a hold of me. I am excluded because of Humira. It is too bad because she said you can stay on almost all other meds. The only meds that exclude you are the TNF's Remicade, Humira, Cimzia. But she said if you are on the 5 ASAs, imuran ect you can continue to take those and still be eligible. Oh well hopefully it does what they hope and a few years from now it will be an available option for all of us.

She did say the clinic near me does a lot of Crohn's studies and she would keep my info for future trials!
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