"Local Crohn's patient sees vast improvement with clinical trial" (Qu Biologics' trial)

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xy123
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Date Joined Feb 2014
Total Posts : 808
   Posted 8/18/2018 2:10 AM (GMT -6)   
said...
“The way their treatment affected me was better than any other Crohn’s drug I had taken,” said Sapinski.


/www.waterloochronicle.ca/news-story/8807158-local-crohn-s-patient-sees-vast-improvement-with-clinical-trial/

Post Edited (xy123) : 8/18/2018 1:24:45 AM (GMT-6)


73monte
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Date Joined Mar 2007
Total Posts : 1963
   Posted 8/18/2018 6:29 PM (GMT -6)   
Thanks for posting xy,

You're always really good about posting info links on new treatments. I've been following QUbiologics for a few years now. It still may be a few years away, but good to know there's promising treatments coming. They mention that the Phase 2 trials will continue in select areas including Macmaster Hospital in Hamilton. This is where my Daughters GI is.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.

Canada Mark
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Date Joined Jan 2013
Total Posts : 3554
   Posted 8/21/2018 8:14 PM (GMT -6)   
@73monte - My GI is here as well. How does she like it? For me, my GI is now scheduling a year out just for follow-ups and appointments. That's the down side. The good side is they have (or used to have) a Thursday walk-in program if things get bad in the interim. Not sure if that still exists.

@xy - I remember listening to the radio interview you posted about this as well where they discussed some people needed longer term treatments in hopes of preventing recurrence. I feel terrible for the person that got a 'taste' of remission, and then had it taken away. Must be hard to deal with.

The results of the next trial will be exciting.

73monte
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Date Joined Mar 2007
Total Posts : 1963
   Posted 8/22/2018 6:32 PM (GMT -6)   
@Canada Mark,

For the most part, she's done fine there. Started as a patient there in Pediatric GI. Pediatric was much more caring, and you could get in very quickly. Adult is more of a numbers game, and very difficult to get in. As long as you remain status quo with treatment, then you get your once/twice a year appointment and move on from there.

U B Tough
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Date Joined Aug 2015
Total Posts : 986
   Posted 8/26/2018 4:54 PM (GMT -6)   
Holy geez. Other than Canada Mark, (hello!), I had no idea there were others so close to my neck of the woods here.

I'm going to McMAster in Sept to see about stem cell transplants for fistula repairs but I'll mention this.

Thanks!
UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Current: 2/day, mostly normal, on Stelara!

IVIG on occasion.

xy123
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Date Joined Feb 2014
Total Posts : 808
   Posted 8/27/2018 7:01 AM (GMT -6)   
@73monte I think this treatment is worth a try, but if I were to seriously consider this treatment, I would do more research about it (what they use in the injections, the proposed mechanism of action etc.), read the patients' experiences, talk to some of the patients and the doctors involved etc. before making a decision of applying to it. Just to be sure.

@Mark, I think those patients should be able to receive the treatment even after the trial is over. I think that sometimes happen, no? I don't know.

@U B Tough, you are welcome. I hope the stem cell transplants help you with the fistula. I think I read a similar study that is being done in the Mayo Clinic, IIRC they are applying the stem cells locally.

Edit: This is from 3 years ago:

IamA CEO of Qu Biologics developing a new investigational treatment for Crohn's disease. AMA!
/www.reddit.com/r/CrohnsDisease/comments/2s7kfk/iama_ceo_of_qu_biologics_developing_a_new/

Post Edited (xy123) : 8/27/2018 8:09:10 AM (GMT-6)


U B Tough
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Date Joined Aug 2015
Total Posts : 986
   Posted 8/27/2018 9:47 PM (GMT -6)   
Thanks xy123. I'm aware, DC crohns is doing the mayo study. I'll mention this one too....not sure Stelara is working as well, or I have another infectionsad c-scope this week should help with that.
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