Crohn's Disease Forum » Your Story » Qu Biologics study


11-14-2018, 11:02 AM   #1
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
Qu Biologics study

Hey everyone. I am new to the group. I wish I could say the same about my crohn's(had for about 30years). I have been ''fortunate'' in that I have had some long stretches of remission without meds(3 years was my best). This past Sept it flared up. I went to tried and trusted pred.(starting at my usual 40m). Always in the past after about 4-5 days my flareup is gone and I do the usual taper. This time MUCH different. It only slowed it down and when I was down to 30m it started to get worse. I was rushed in for an endoscopy. Not a good scene.(believe it or not this was a ''blessing'' in disguise). I had looked into participating in the Qu Biologic study. Turns out the severity of my flare up allowed me to be accepted. I had to jump through allot more hoops(felt like a freakin lab rat),but I am now injecting myself with the treatment. I have given myself 8 injections so far(.10 ml of E.coli every two days in abdomin). I went from a high of 32 washroom ''visits'' down to just 8-10. I am hoping this treatment works. I am also hoping that I can give all of us here a light at the end of the tunnel. The study is for 55 weeks.I will keep everyone posted with my progress.

Tom
11-17-2018, 12:51 PM   #2
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

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Been curious about this study. Glad to hear it seems to be working for you. Looking forward to hearing more.
__________________
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Stelara every 8 weeks, B12 every 2 months, Vitamin D 2000 IU

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Methotrexate, Prednisone, Imuran, Humira, Cipro and Flagyl.
11-17-2018, 04:01 PM   #3
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
Igpcarter I don't know if you would be accepted because you have had surgery. You also cannot have been on a biologic for 60 days prior too study.
The only med you can be on is pred, (max 20 mgs). You have to be on a sustained dose for 1 month.

I will keep everyone posted on my hopeful progress. I go in for my first examination on the 27th of Nov. Don't know if I am going to be scoped or not.
11-18-2018, 05:07 AM   #4
Crohn2357
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Join Date: Aug 2013

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Made you famous:
https://www.healingwell.com/communit...84359#m4084359

https://www.healingwell.com/communit...84374#m4084374

Thanks for sharing your experience. I hope this gets more attention. It will be interesting to see the treatment's effects on your Crohn's.

Last edited by Crohn2357; 11-18-2018 at 08:17 AM.
11-18-2018, 05:33 AM   #5
Guerrero
Senior Member
Thank you for sharing. Keep us posted
11-18-2018, 09:55 AM   #6
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
For sure I will keep everyone posted\

This is also supposed to be a treatment for MAP. I wouldn't be surprised if I have it because I spent my summers when I was a kid from the age of 7-17 on my Grand parents ranch. We drank and consumed RAW dairy.for about 2&1/2 months every summer. I don't know if there is any type of testing for MAP yet. I could find nothing here in Canada. I will ask my gastro. when I seem him in 2 weeks.
12-27-2018, 05:40 PM   #7
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
After 2 months of the injections here are my numbers
hemaglobin-133 was 130
platelet count-416 was 436
lymphocytes-.08 was .07
Reticulocytes immature/total 22.8 was 18.9
Fecal cal protein-3410 was 6860
CRP-6.1 was 11.0
Neutrophils-7.9 was 10.0

My Gastro is quite happy(for the most part) with the results so far. I am for sure feeling quite allot better. My overall bowel movements have gone for a high of 32 times in 24 hours down to approxx. 5-8 times. My overall pain is gone and my abdominal rigidity is gone. I am hoping my latest blood and stool samples(just given today) will show even more improvement. I will keep everyone posted.
01-01-2019, 08:23 AM   #8
Guerrero
Senior Member
Interesting improvements.
Wish you the best for this new year gohabsgo!
01-05-2019, 02:58 PM   #9
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
here are my latest results taken Dec-27
Hemaglobin- 131
Platelet-409
Neutrophils-8.3
Reticulocytes immature/total13.9
CRP-2.1
Fecal calProtectin-1520
Lymphocytes -.09
Total bowel movements 4-5 times a day. Blood 95% gone.

I go for my scope sometime in Feb. I hope by that time it's completely gone.
01-27-2019, 01:50 AM   #10
beyondSymptomManagement
 
Join Date: Dec 2018

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For anyone who may be interested in more information about this trial I just made a post about it with instructions on how to participate.


@lgpcarter
There's a questionnaire available on their trial website that would very quickly let you know if you are eligible.
03-03-2019, 02:39 PM   #11
gohabsgo
 
Join Date: Dec 2011
Location: Newwestminster B.C.
Here are my results from my Feb 22 scope
Everything is normal except my Calprotectin-762(down from a high of 6860)
Blood all gone and bowel movements completely normal (1-2 times per day and stool is normal). All cramping has quit.
My next scope is in early July and my next samples to be given are at the end of April. I am hoping by this time my Calprotectin levels are within normal range.

I now have to taper off Pred. I was on 10mgs when the latest tests and my scope were done. Next tests will be done without any Pred.
03-04-2019, 04:15 AM   #12
Jonny84
 
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Join Date: Jun 2015
Location: Edinburgh, United Kingdom

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Here are my results from my Feb 22 scope
Everything is normal except my Calprotectin-762(down from a high of 6860)
Blood all gone and bowel movements completely normal (1-2 times per day and stool is normal). All cramping has quit.
My next scope is in early July and my next samples to be given are at the end of April. I am hoping by this time my Calprotectin levels are within normal range.

I now have to taper off Pred. I was on 10mgs when the latest tests and my scope were done. Next tests will be done without any Pred.
THat;s so great to hear - congratulations!

Hopefully it won't be too long until we can all benefit from this treatment
03-21-2019, 05:41 AM   #13
Jonny84
 
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Join Date: Jun 2015
Location: Edinburgh, United Kingdom

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Gohabsgo - can you tell us any more about how the trial is going?

Am I right in thinking you are part of the initial 20 patient open label trial which will then be followed by the 150 patient double blind placebo controlled study?

Any idea when the results are expected? I was guessing/hoping maybe by summer 2020.
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