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Crohn's Disease Forum » Treatment » SSI Vaccine Trial


 
12-22-2013, 05:18 PM   #1
Trevor
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SSI Vaccine Trial

Hey guys and gals,

I'm on the list for an SSI Vaccine trial here in Vancouver with Qu Biologics. I know a bit about it but not as much as I'd like.

Has anyone already done this in the first phase or through compassionate care?

Really any advice on trials and whatnot would be fantastic.

Right now they just have me gathering my medical records and whatnot.


Thanks!
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- Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
12-22-2013, 06:34 PM   #2
Jennifer
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I don't know much about it personally but there is a thread in the Ask the Experts section about it: http://www.crohnsforum.com/showthread.php?t=43965

This poster talks about their experience (from the thread above): http://www.crohnsforum.com/showpost....9&postcount=59

Hope it works for you and please keep us posted.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-25-2013, 03:12 AM   #3
rollinstone
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Hey trev, I think you're the first and maybe only user of the forum that's gonna be doing the trial which is awesome that we have someone of our own to report back! Tyler (the guy who has had the sustained 3+ year remission) has posted on here before and said the vaccine was like a miracle cure for him. I am really excited for this treatment I think it holds so much promise. Please let us know how you go!
12-25-2013, 02:27 PM   #4
Brenden
 
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Good luck in the trial!

Last edited by Brenden; 03-31-2014 at 09:04 PM.
12-27-2013, 04:23 PM   #5
Trevor
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Thanks for the info and support!

Ill do my best to report back with the low down as I go through the process
02-21-2014, 08:26 PM   #6
Trevor
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Welp, looks like I am in. Passed my blood tests (passed as in did poorly enough to be eligible).

So far I've had to fill out a bunch of forms, give them my medical records and then do a pretty good battery of blood/stool/urine tests.

Next up is an in-person exam with the head trial Doc on March 7th, mostly a formality it sounds like. Oh and I have to fill out sort sort of diary starting next week.

It's been the worst 3-4 months of my life thanks to this whole Crohn's thing (narrowly beating out my last big flare for top honors) so I am really, really hoping they're on to something with this SSI thing, for everyone's sake.

I'll probably be posting more updates as things progress. If anyone has questions I'll do my best to answer them
02-21-2014, 08:58 PM   #7
rollinstone
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Good luck bro. I think they're onto something, may it fix you right up! Keep us posted as you go please.
02-21-2014, 09:46 PM   #8
Trevor
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Thanks! I'll post the crohnie updates here and the muggle (ha) updates on my blog. There are some things regular people just can't handle.
02-21-2014, 10:04 PM   #9
ronroush7
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Wish you the best!

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02-26-2014, 08:38 PM   #10
Trevor
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Nothing new to report so far this week. I have to start filling out the journal on Friday. Not that it will be super exciting, but presumably it's an important part of the process.

I did start a couple of new supplements that are suppose to be immune boosting. I know this is the opposite of what the accepted wisdom is for Crohn's and a couple of them actually warn against use for AI conditions but I figure if I am going to go for this I had better buy in 100%.
02-26-2014, 09:09 PM   #11
VeganOstomy
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Nothing new to report so far this week. I have to start filling out the journal on Friday. Not that it will be super exciting, but presumably it's an important part of the process.

I did start a couple of new supplements that are suppose to be immune boosting. I know this is the opposite of what the accepted wisdom is for Crohn's and a couple of them actually warn against use for AI conditions but I figure if I am going to go for this I had better buy in 100%.
I'm looking forward to hearing how the SSI vaccine works for you! I was ready to travel to B.C to do the trial, but I was excluded due to a pending surgery.

Are the supplements part of the trial? I've been in a trial before and it's super important that you let the study team know that you're going on something "new"... you don't want anything interfering with the data they are collecting.

Good luck!
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02-26-2014, 09:12 PM   #12
rollinstone
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Go for it bro, the auto immune theory behind crohns is so dated and flawed. Lookin forward to hearing of your success!
03-04-2014, 03:07 PM   #13
bigtruck
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Good luck keep us posted
03-04-2014, 05:13 PM   #14
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Yup good luck and keep us update!
03-07-2014, 05:11 PM   #15
Trevor
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Well I've just returned from their office! It's across the hall from my GI's office. Talk about convenient.

I'm in for realzie !!! First injection is on Monday and then it's 4 months of self-injections every other day.

All the well wishes much appreciated.
03-07-2014, 05:18 PM   #16
VeganOstomy
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Well I've just returned from their office! It's across the hall from my GI's office. Talk about convenient.

I'm in for realzie !!! First injection is on Monday and then it's 4 months of self-injections every other day.

All the well wishes much appreciated.
Awesome sauce! Please share your progress if allowed by your non-disclosure agreement.
03-07-2014, 05:27 PM   #17
Trevor
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I'll ask them on Monday what I am allowed to share but they haven't mentioned anything and there was no NDA signed so I think we're good!

So far all I have to report is comfy chairs and cheap toilet paper :P
03-10-2014, 01:02 AM   #18
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Good luck-I hope it works wonders for you. I wish this trial was available to Australians!
03-12-2014, 01:42 PM   #19
Trevor
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I think the reason for not having to sign an NDA is because I really have no info that isn't already public, haha. Being a blind trial and whatnot I don't really get to know much of anything.

Today was day 3, I've had two injections and will have a third on Friday and then after that it's every other day for the next 7 weeks, but at home from now on (thank god).

So far nothing to report as far as feeling any different but that's not exactly shocking since there's a 50/50 chance I'm not on anything, haha.

I guess all I can say is that it doesn't hurt, the injections are easy and the needle is super tiny.
03-14-2014, 02:28 PM   #20
tzvia
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I'm in the process of getting approved to participate in the study! Can't wait to hear how you do!
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03-14-2014, 02:54 PM   #21
Trevor
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Yay!

I am just about to head down to the clinic now for my last day of 'training' and to pick up all my stuff (meds, needles, sharps container, cooler bag for transport and alcohol swabs, plus journals and lab requisitions).

One week down - fifteen to go. I wasn't anticipating that this would be quite so torturous mentally, but I really just want it to be June!

I think I keep saying thanks but really thanks to everyone for the support it makes a difference and hopefully this trial will make a difference too.
03-30-2014, 06:18 AM   #22
tzvia
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How's it going, Trevor?
03-30-2014, 02:14 PM   #23
Trevor
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Good!

Tomorrow is the first day of week 4, have to go do a set of labs this week but otherwise it's just steady as she goes for another 4 weeks.

I've got no way to be sure but I suspect I'm on the placebo so it's just a torturous waiting game for week 8 and the open-label portion of this rigmarole
03-31-2014, 02:26 AM   #24
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Wow, this is so awesome, loving to read all this, my daughter really wants do this trial. Keep us posted.
03-31-2014, 06:12 AM   #25
F.u.Crohns
 
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Plz keep us update whoever get accept to this trail. Good luck! !!!!!
03-31-2014, 06:14 AM   #26
VeganOstomy
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I've got no way to be sure but I suspect I'm on the placebo...
Does that mean you haven't been improving?

03-31-2014, 10:40 AM   #27
David
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If you are on the placebo, let me be the first to say thank you. I always feel bad for the people who end up being on the placebo but it's so important that some people are on it. Even if a medication ends up not being efficacious, it's so important that these studies be done to add to the body of science.

I look forward to future updates
03-31-2014, 11:48 AM   #28
Trevor
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There's a few reasons I'm pretty sure I'm not on the real deal, haha. I don't want to say too much for the sake of anyone else who may get into the trial. They may not notice everything I did and I don't wanna mess them up

Almost halfway there!
03-31-2014, 12:21 PM   #29
Orchid
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On the bright side you'll still get the real thing eventually!
03-31-2014, 12:42 PM   #30
Trevor
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Exactly!

I get to be helpful and selfish all at once, haha.
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