• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

SSI Therapy with Qu Biologics

Hey Everyone,

I want to share my success story so here it goes.

I was diagnosed with Crohn’s disease on July 17, 2006. My initial symptoms, which began in May of 2006, were loose stools combined with small amounts of blood. I experienced severe lower stomach pain and extreme weight loss. I lost around 30 lbs in the first couple of months.
The initial treatment for my disease was 40mg of Prednisone daily. After a colonoscopy I was informed that I had mild to severe Crohn’s disease in the corner of the transverse and descending colon, as well as the corner of the ascending and the transverse colon, and the cecum.
After taking the Prednisone my symptoms disappeared within days. I continued taking 40mg daily for approximately a month and gradually tapered to 5mg a day. While taking 5mg my symptoms of pain, bloody stools and diarrhea reappeared. After this occurred I increased my Prednisone intake back to 40mg. The second time I tried tapering off the Prednisone I took Pentasa along with the Prednisone. Once again when I was taking higher amounts of the Prednisone my symptoms disappeared. After tapering the Prednisone, and taking Pentasa, my symptoms reappeared when I had decreased my Prednisone to 10mg. Again I had to increase my Prednisone to 40mg daily.
In March of 2007 I changed Crohn’s specialists for a second opinion. I continued trying to wean off my Prednisone but was unsuccessful numerous times. In August of 2007 I was hospitalized for four days. During my stay I received my second colonoscopy with my new specialist. The diagnosis was that I had a severe flare up, but that my Crohn’s in general was mild. I was given Prednisone through intravenous and was back up to 40mg upon discharge from the hospital.
In August of 2007 I began seeing a homeopath/herbalist and taking Mannatech nutritional products to try and come up with a strategy to get off the Prednisone.
In June of 2008 I was hospitalized again. The doctors recommended that I begin another form of drug therapy.
In the fall of 2009 I began taking Imuran in addition to a daily dose of 40 mg of Prednisone. After taking the Imuran for 3 months I started to wean off the Prednisone. This time I was successful in weaning off the Prednisone but still experience some mild irritations from my Crohn’s disease. I continued to take 150 mg of the Imuran daily for about a year. In July of 2010 I began to get ill again. I tried taking 40mg of Prednisone to calm the flare but this time the Prednisone did not seem to be working. I even increased the dose to as high as 55 mg of the Prednisone. After being in the hospital two separate times in two weeks, and missing two weeks of work I started the SSI treatment.
I started the SSI treatment on July 26 of 2010 with an initial injection of 0.02 mg. At this time I was taking 40 mg of Prednisone and 150mg of Imuran. Before starting the SSI treatment I was experiencing severe lower abdominal pain and loose stools. In the two weeks I was sick before starting the SSI treatment I lost 24 lbs.
After 7 days and three injections of 0.02mg of the SSI treatment my lower abdominal pain and loose stools were gone. I was regular, feeling normal and back to work. After three weeks I gained 14 lbs back. After a week of the SSI treatment I started weaning off the Prednisone again. On September 15, 2010 I was Prednisone free. On September 28, 2010 a colonoscopy showed no signs of Crohn’s activity. On October 18th, 2010 I stopped taking 150mg of Imuran daily. At this point I was at 0.1mg of the SSI treatment.
In the second week of November I travelled to Mexico for a week and was able to eat and drink whatever I wanted with no side effects of the Crohn’s disease. Prior to the SSI treatment I travelled three times during my difficulties with Crohn’s disease and returned with a flare up every time. This time I was able to enjoy myself and returned feeling as healthy and well as I was before I left.
While I was battling my disease I regularly had colonics treatments and saw a homeopath/herbalist who prescribed natural herbs to help with my healing process.
It wasn’t until I started the SSI treatment that I was able to start healing my body. I believe that this treatment is the sole reason I am off all western medicine today. I’m also glad I no longer have to deal with the side effects that can accompany taking the conventional drugs typically prescribed for Crohn’s disease. I am feeling the best I have ever felt since being diagnosed with Crohn’s disease. I haven’t missed a day of work or had any loose stools since starting the SSI treatment. I feel very grateful to everyone who has helped me along the way in introducing me to the SSI treatment. I have been Crohn's free now for almost 3 years. Qu Biologics is currently doing a SSI clinical trail and is looking for patients. I would strongly recommend looking into it as it has changed my life completely.

Tyler
 
Last edited:
Thank you, Tyler, for sharing this. I am headed for the SSI study next week. I'm cautiously optimistic as, like you, nothing else has worked for me and my disease continues to progress. I have fired every doctor I've had so far.
Anyway; thanks again for your courage to help pioneer this new drug! I can only pray it works as well for me as it has for you. We will find out soon!!
 
Thanks Tyler much appreciate the story. I talked with Hal Gunn about the trial, unfortunately I'm on Humira now, and can't participate unless I quit taking Humira. Since the trial is only for 8 weeks I decided to wuss out and not go through with it. But I'm surprised they're still having trouble finding people.

I can't believe this was 3 years ago, it takes forever to get drugs through trials. They need some way to speed up the system for a drug/vaccine that has so much potential.
 
Hi Dave13, I am doing ok. I have not achieved remission. My lab work showed that the SSI worked for me, but 16 weeks was just not long enough for me. :(
I am confident in saying that given more time with this drug, I would have reached remission. I am working on plotting all my lab work on a graph that would help show my improvements. I still am better than I was before I started the trial but I do still have bad symptoms sometimes.
sorry, i wish i had better news for you!
 

dave13

Forum Monitor
Location
Maine
I had a voicemail from Qu Biologics today.They asked me to call them.I'm going to give them a call and see what they have to say.

I'm happy for you and it is encouraging you benefited from the program.I have talked with Qu before and my colorectal surgeon talked me out of it.The message was from the same lady I talked with before.It's good you are compiling the information,I'd be interested to see it.

If you'd like,I'll let you know what Qu says when we talk.
 
I am in the process of applying for Qu Biologics study- doing my blood work and preparing medical history. Hopefully, I am approved and will be traveling to Canada next month.
 
Hi Tyler
My daughter Morgan who is 19 and attending ryerson this year was diagnosed with crohns at 5 years old. I have been in touch with both rob freeman and Hal Gunn. Morgan was drug free for 7 years and then fell out of remission after a trip to Cuba with her school band. She got salmonella poisoning. It has been one drug after the next and Morgan is now failing remicade. Not that it put her in remission. They are talking pred again and humira. I have followed tour story and Colleen's. Morgan is interested in the study but fearful of being off any meds. Any possibility you might share your story with her in person or by phone. She has a car in toronto so is mobile. Any words of encouragement would be so helpful.
Kindly,

Susan
902478-3225
 
I know Tyler's is an old post here, but does anyone know anything about the current (July 2015) phase 2 trial for UC patients? I'm so sad I didn't know about SSI treatment until I stumbled upon this old post here.
 
Hi Julie,
I believe that Qu's UC trial will start in Vancouver this month, with sites in Alberta and Hamilton to follow in August. The trial will be open to Canadian patients with active symptoms, and it is going to be an 'open-label' trial, meaning that everyone will receive the SSI treatment. I've been told that interested patients can contact info@qubiologics.com for more info.
 
Wow. I've never wanted to be a Canadian resident more than I do now. Well, I'll have to wait for an opportunity for US residents to participate. I'm in that place where I need to make a decision about Humira (well, I've been here twice before and opted for my go-it-alone approach with the Specific Carbohydrate Diet). At this point, I feel a conviction that I need to do what it takes to achieve full mucosal healing. God, I wish SSI could get fast-tracked to market somehow. :(
 
Hey Tyler,

So I was told by two separate Qu personnel that the trial is only open to Canadian residents. No exceptions.

If the trial results are all overwhelmingly positive (and I'm hopeful they will be), what's a realistic timeline for seeing this therapy go to market? Nothing I've seen out there -- and I search daily for answers -- has given me more hope than this SSI therapy. I would love for it to be a treatment option in the coming years.
 

Lady Organic

Moderator
Staff member
Hi Tyler, are you one of the patients QBiologics reports having treated during their compassionate program? I am curious to know how you got informed about this opportunity in 2010...
thx!
 
I had a voicemail from Qu Biologics today.They asked me to call them.I'm going to give them a call and see what they have to say.

I'm happy for you and it is encouraging you benefited from the program.I have talked with Qu before and my colorectal surgeon talked me out of it.The message was from the same lady I talked with before.It's good you are compiling the information,I'd be interested to see it.

If you'd like,I'll let you know what Qu says when we talk.
Hi! I know this is an old post but was wondering if you can tell me why the surgeon talked you out of it?
 
Hi,
Does anyone know if Tyler is still in remission today? I can't seem to find anything about him online - even the original video where it talks about his story. I just find that odd?
 
sorry for digging out this older thread but maybe someone can help out. On their website it says that there will be a clinical trial in multiple countries starting in early 2017. I tried to contact that company via their contact form but they don't respond.

Can anyone help out with a direct contact or something? I haven't tried to call them since I live on the other side of the globe :)
 
Top