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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!
 
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!
 
Thanks for the info and support!

Ill do my best to report back with the low down as I go through the process :)
 
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 :)
 
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.
 
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%.
 
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!
 
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.
 
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. :cool2:
 
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
 
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.
 
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.
 
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 :)
 

David

Co-Founder
Location
Naples, Florida
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 :)
 
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!
 
Hi! It's been a while since I've been on the forum. But oh my gosh, this is very exciting to me! Trevor, just want to say way to go and even if you aren't getting the real deal, you are making an admirable contribution to medicine, science, and your fellow Crohnies worldwide. Can't wait to keep hearing about this!
 
I'm in the process of getting approved to participate in the study! Can't wait to hear how you do!
Hi tzvia I am also in the process of getting approved to participate in this study. I see you live in Pennsylvania - I live in Connecticut. My only concern is the cost of traveling back and forth to Canada 3 times. Have you looked into about how much travel will cost you ? I have never been to Canada. Do you think the $3800 in travel cost will be enough. I would really like to be a part of this study but am a little scared of how much the travel and stay will cost me.
 
I do think it would be enough. They also have discounted hotel rates for us. I haven't checked prices, but I figure the flights should be maybe $700 x 3= $2100, and the hotel is $50 a night. Should work out. Check online an see how much flight are from your area. I know the people who set the amount of reimbursement for us set it based on research they did on how much they think it would cost us.
 
I do think it would be enough. They also have discounted hotel rates for us. I haven't checked prices, but I figure the flights should be maybe $700 x 3= $2100, and the hotel is $50 a night. Should work out. Check online an see how much flight are from your area. I know the people who set the amount of reimbursement for us set it based on research they did on how much they think it would cost us.
Great thank you ! I will check online flight prices - this is very exciting ! :banana:
 
Week 4 down, 4 more to go.

Woke up with quite a bad ear ache and a very swollen lymph node on my jaw/chin. Not really anything to do with the vaccine but it's annoying :p green tea with honey and lemon by the gallon.

Otherwise status quo. Steady as she goes...
 
Hi guys,

My name is Adrienne. I was diagnosed with UC 10 years ago. 2 years ago flew down to Bahamas to receive this treatment (as the trial was not yet available in Canada) and was on the treatment for approx. 1 year. I was in full remission after 2 months of starting the injections, and have remained so since stopping (1 year).

I had no side effects, other than the redness at the injection site.

In addition to being in remission, it has also helped my immune system in general. I used to get every common cold, and after the treatment, I found I rarely get sick.

Let me know if you have any questions about it. I was done with suffering, so I gave this treatment a chance, and I am so glad I did.
 
That's amazing, Adrienne! Did the trial provide the drug to for a whole year? I'm hoping to get into the trail. I'll know by next week if I'm in!
 
I don't mind at all David. Share away. I was on Asacol and corticosteroids (Proctofoam), and Remicade prior to going on the SSi treatment.

Tzvia - yes QuBiologics provided the vials for the entire year. It wasn't an official "trial" at that point, but rather an informal one.
 
Just sent my labs in today to Qu! I'll know in about two weeks if I'm going to Vancouver for the trial!
Zoe
 
1/4 done !

May 5th (I think) is my half-way point when I go back to the clinic and they start me on round 2.

:-D

Zero info to report.
 
Also: Adrie

Thank you so much for taking the time to post this. I have to drive to the clinic at least 5 more times (we all know how much fun driving can be when you're not feeling well) and hearing positiver testimonials is great motivation.

Not that I don't love you all and want to do this for everyone's benefit but when you're lying in bed at 7 am thinking about driving in rush-hour traffic for an hour it's easy to get discouraged :p

Cheers!
 
Adrie, my daughter was diagnosed with UC in January 2013, and just reconfirmed diagnoses last week. My question is, do you know if this treatment is still available for UC? We are willing to pay if it is. thank you so much,
 
Nipeli - I would contact Qu Biologics Directly and enquire about the Ssi treatment for UC in other parts of the world. I hope for your daughter's sake it is!

Trevor - good luck with the treatment journey - stick in there.
 
Last set of blood tests Monday! Then meeting with the doc Thursday and then starting Phase II (open-label drug, presumably) on the following Monday the 5th of May :-D

I've been stuck at home so my buddy decided we should do a Podcast. Somewhat about Crohn's and the SSI a bit and Paleo and fitness if anyone wants to listen to us ramble.

http://traffic.libsyn.com/absolutelyseriously/1.mp3

- or -

www.TheAtlAtl.com


It's just two bored, twenty-something guys rambling, or a bit like Bob and Doug Mackenzie discuss sugar and Oreo cookies, haha.

Warning: explicit.
 
Hi Trevor (and everyone else who has offered their input)

My name is Natalia Korczynski - I was one of the first people to participate in the trial with QU Biologics so I'm going to share my experience on here with you (a very positive one), and provide you with some more information. But, get ready for a novel!

The treatment, as I'm sure you already know, is called SSI Therapy: Site Specific Immunotherapy.

SSI is a vaccine that you administer yourself, every other day; the method is similar to insulin injections commonly used for diabetes for example. Prior to going on the vaccine you are trained by a health professional on how to administer the vaccine properly. The vaccine is composed of dead bacteria - it's all natural and there are no side effects as a result (at least I never experienced any while I was on the vaccine, nor did the patients that I spoke with who were also on it). The vaccine activates the body's immune system by targeting the organs affected by the disease, thereby reversing the chronic inflammation associated with Crohns, Colitis, and other autoimmune diseases. I was on the vaccine for just a little under a year (July 2011 to June 2012). It literally changed my life. I was originally diagnosed with Crohn's in November 2009 and for the first year after the diagnosis I was in excruciating pain, probably because I refused to take all of the crazy drugs that were being pushed my way by my GI specialists. But I was always a firm believer in taking the natural route so I saw a natural path and focused on trying to get better through a better diet, herbs, probiotics, digestive enzymes, the list goes on. And although that did help a little, the pain remained. I ended up in the hospital with a bowel obstruction June 2011 and it was shortly after that, that my natural path told me about the clinical trial for SSI therapy, originally started by Dr. Gunn, a doctor from BC. Since SSI therapy was still in its beginning stages at this point, I actually flew all the way to the Bahamas to participate in the trial since it had not been approved in Canada yet. But now it is, because they have seen so much success with it! I am no longer on the vaccine, and have been symptom free (knock on wood) for almost two years. Following a colonoscopy from March of last year, I was told that I am 100% in remission. I am going to attach a few links for you to check this out. It's for Qu Biologics - the company associated with the treatment, along with detailed information about the doctor and how this whole process got started. I can't stress enough how different my life is now. And that, coming from someone who wasn't even able to get out of bed for days to go to work, is saying a lot. I noticed a difference in my symptoms within 48 hours of taking the vaccine. If you can, I would strongly, strongly, recommend this treatment to anyone. Let me know if you have any other questions!
 
To anyone who has signed up for the trial, I'd like to congratulate you for your bravery and willingness to try an up and coming treatment! As a compassionate care recipient, I know how doctors can react when you want to change things and take a risk. But this one is well worth it. So congratulations! Keep spreading the word and posting of your successes!

Also, best of luck to any new comers to the trial! I hope you pass the enrolment process and see positive results!
 
Hey Trevor, any updates? I am headed there to be in the trial next week. This is a last resort for me. If it doesn't work I'll be forced to go on nasty biologics :(
 
Literally sitting in the doctors office right now. Not sure if I get my first shot today or Monday or what but I'll try and post daily for the next week or two.

Hoping that I start today and by Monday I'd be on dose 3. But we shall see.
 
!!!

Deemed a 'non-responder' and I get my first treatment of the open label vaccine on Monday morning !!!

!!!


(yes it would very much appear I was on the placebo)

(I've never been so excited to be a 'non-responder')
 

David

Co-Founder
Location
Naples, Florida
Hahah. I'm excited for you Trevor! God I hope this treatment does you well. Either way, thank you so much for your courage and commitment to seeing it through.
 
I'm excited and cautiously optimistic :)

I'm just glad I get a chance to try it. Not knowing if it would have worked would have killed me.
 
Wow! That's good. I'm glad you are getting the med now. Please keep us updated. Prayers being sent your way! I'll be in your shoes next week!! So anxious! I hope I actually get the drug in the first week. We will see.
 
If I'm feeling decent ill have to come visit!

Actually. Next week like next Monday!? I'll be there every week. We'll probably meet!
 
That's my last day! It's the reading day after the second injection and the day they give me all the kit to take home.
 
That would be hilarious! Also: totally wrong of me, Friday is the third injection day.

Either way I'll be sure to post updates. I'll either be a week ahead of you or nine weeks ahead of you.

Super duper excited!!! :ylol2::ylol2::ylol2:

Can't wait!!! :sheep::sheep::sheep:
 
Hey Everyone,
I also took the SSI treatment. I have been Crohn's free now for 3 years. I battled Crohn's for 5 years before starting the SSI treatment. I would strongly encourage anyone struggling with this disease to look into trial. Pass the word.

Trevor,
Hope it work as well for you as it did for me. Any questions don't hesitate to ask.


Tyler
 
Hey Everyone,
I also took the SSI treatment. I have been Crohn's free now for 3 years. I battled Crohn's for 5 years before starting the SSI treatment. I would strongly encourage anyone struggling with this disease to look into trial. Pass the word.

Trevor,
Hope it work as well for you as it did for me. Any questions don't hesitate to ask.


Tyler
I watched your video when I heard about the therapy. I'm so glad it worked for you! I
 
Tee minus three hours!

Just for comparisons sake and so I don't forget (because I will) I'm currently at around 3-6 BM's, mild to moderate stomach pain, lower right abdomen, 10 mg Pred and 3 x Mezavant tablets daily. Oh and fatigue, lots of fatigue.

That's down from 15-20 BM's, severe stomach pain and 60 mg Pred in November/December, 2013.

I usually start feeling worse and stop improving on Pred right around the 10 mg mark.
 
Thanks!

Currently tapering - last week was 15 mg / 10 mg on alternating days and then this week at 10 mg and then next week 10 mg / 7.5 on alternating days.

Should be pretty much off it right abut the same time I finish the vaccine off.
 
Trevor! That is sooooo exciting! Praying that relief from symptoms starts sooner than later! Keep the updates coming! 👍
 
I'd be curious about everyone else's treatment protocols? It seems like they've pretty well settled on 8 weeks as the maximum necessary time needed but I'd be very curious to know if they've altered the procedure much aside from shortening the treatment length? Average dose? Timing? Is the rash always how they've controlled the dose?

There's a question for you Tyler Wilson or Adrie or anyone else who's already been through the treatment.
 
Trevor, I was under the impression that they allowed for 16 weeks of the drug...or 24... They said that 4 months of treatment is the standard for Crohn's.
I fly out tomorrow!
 
I could be totally wrong. I just assumed 8 weeks was the length because of the first phase but my reading comprehension skills are suspect.
 
Confirmed with the trial nurse today that a full course is 8 weeks and after week 16 of the trial there's no treatment, just phone calls.

That's part of the beauty of this :-D no pills to take, no injections forever :-D
 
So we're almost 72 hours from the first injection and about 20 from the second. I just slept for 9-ish hours which is fantastic for me. Usually it's a struggle to get 6 or 7.

Last night my stomach was quite upset about something. Lots of gas and bloating. Usually I'd associate that with bad food but I hadn't eaten anything I haven't been eating successfully for the last few months.

We'll see how today and tomorrow goes, I guess :-D so far so good.
 
Hmm. Very cramped and/or bloated. Uncertainty because this is very much new, gas and bloating but no BM's.

Uncomfortable but I'm sticking with the anything new is good theory until proven otherwise :-D
 
You should see improvements within the 1st week. I was very sick when I started the SSI and within 7 days I improved drastically. It's a good sign that your stools have improved. You want to try and maintain a loonie / toonie size reaction site. This is exciting. I hope it goes well for you.
 
Well not no BM's. Just none last night when I was feeling not great. Usually when I don't feel well like that there's lots of trips to the bathroom.

I am improving though. I'm hesitant to quantify it because this week was strange as far as all the driving and not eating normally. But I stayed home and ate normally yesterday and took no immodium (usually 4 tabs daily) and so far today just 1 solid BM. Granted I've only been awake for 30 minutes but that's a pretty darn good start.
 
Thing are much less messy, if that makes sense? Even when I had formed BM's previously they were not 'dry' like they are now.

Sorry if that's slightly graphic but it just struck me what a significant change that likely is :)
 

David

Co-Founder
Location
Naples, Florida
Nothing is too graphic Trevor. People are dying for details on all this. As far as I'm concerned, feel free to count the kernals of corn and peanuts.
 
Trevor, thank you so much for all the details and remembering to update! I don't mind the graphics. We are all there with you. :)
I had my physical on Friday and met with dr Bressler. I was declared sick enough to participate. ;) I receive my first dose on Monday as part of the randomized study.
I am praying for you and myself!! Keep the updates coming and I will as well. Have been pretty sick since I got here so it will be easy for me to determine if it is helping. ;)
 
Awesome!

In some ways I wish I was as sick as I was in December and January so it would be a more dramatic improvement. But wishing to be sicker so you can get more better is not very logical :p

Oh and David, I would count them but no corn or peanuts on Paleo AI :lol: I'll for sure keep up with the details though!
 
I'd say 6 + - 3. So anywhere from 3 to 9 and lately more towards the formed than loose end of things but as previously mentioned still plenty of room for improvement.

Today was 3 this morning, all within 2 hours of getting up and I think that's likely it for the day.

I have absolute faith we'll get to the magic single BM a day. Things appear to be heading that way. I think the big thing for me will be can I get there and stay there without steriods.
 
You'll get there bro, from what I understand, each injection you get your body produces macrophages, which is what they theorize is faulty, in a weird analogy, i see it kinda like restarting a computer system when it freezes.. After 8 weeks of it your immune system should be running smoothly. I got my fingers crossed for you. And thanks heaps for keeping us updated and for going through the placebo so patiently. I believe this thing is gonna cure you, much like I believe it cured Tyler. God bless
 
Another day, another 3 solid BM's :p all within 5 hours of waking up.

Maybe more significant is the cramping/pain still. Nothing drastic just not normal. In my mind that's my immune system waking up and doing something it wasn't doing before :p lets hope.
 
So Trevor has it been 3 bowel movements and done, no more the rest of the day? If so, that sounds like progress since before it was anything from 3-9 which I'm guessing means an average of 6?
 
I don't keep a written food diary but I do pay close attention to what/when I eat and if and how it effects things. I'm eating what is essentially Paleo with some tweaks (Kefier and scd yogurt, mostly).

I would say pre-Crohn's, David, for the type of BM some have been. Maybe a few years ago when I was first on Pred but it would have only been briefly and only when on Pred. So that's certainly progress.
 
I'm eating what is essentially Paleo with some tweaks (Kefier and scd yogurt, mostly).
Did you just start this diet recently? A well-known side-effect to eating paleo is constipation, which sounds like this crampy/bloated feeling you're talking about with no BM's after the morning (you should be having a BM after each meal), but I'm crossing my fingers that it's the meds kicking in! :mario2:
 
Haha, Paleo is actually quite liberal for me. I'm use to GAPS / SCD / Paleo AI.

I think that I fast all day and only eat in the evenings for the most part probably explains the timing of things.
 
I think that I fast all day and only eat in the evenings for the most part probably explains the timing of things.
Damn, that's what I thought. Even with my ileostomy, I can slow down my output to nothing all afternoon if I skip eating at a certain time.

Are you fasting for any particular reason during the day?
 
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