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Crohn's Disease Forum » Treatment » SSI Vaccine Trial


 
04-03-2014, 06:27 PM   #31
Emily
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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!
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04-03-2014, 06:41 PM   #32
Zeppy321
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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!
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.
04-03-2014, 09:52 PM   #33
tzvia
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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.
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04-03-2014, 10:02 PM   #34
Zeppy321
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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 !
04-04-2014, 11:16 AM   #35
Trevor
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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 green tea with honey and lemon by the gallon.

Otherwise status quo. Steady as she goes...
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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.
04-06-2014, 05:28 PM   #36
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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.
04-06-2014, 08:29 PM   #37
David
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Thanks for sharing your story Adrie! What medications did you try for your UC prior to trying the SSI?

And do you mind if I copy your post to this thread?
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04-06-2014, 08:58 PM   #38
tzvia
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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!
04-07-2014, 06:29 AM   #39
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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.
04-07-2014, 08:01 PM   #40
tzvia
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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
04-08-2014, 07:39 PM   #41
Adrie
 
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I hope it works out for you Tzvia!
04-10-2014, 03:49 PM   #42
Trevor
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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.
04-10-2014, 04:00 PM   #43
Trevor
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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!
04-10-2014, 04:25 PM   #44
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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,
04-15-2014, 11:14 PM   #45
Adrie
 
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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.
04-27-2014, 12:39 PM   #46
Trevor
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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.
04-27-2014, 05:01 PM   #47
Adrie
 
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Thanks for keeping us posted Trevor. I really hope the word spreads about this trial and more people are able to get relief!!!
04-27-2014, 05:02 PM   #48
David
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I echo Adrie. Thank you so much on many different levels
04-28-2014, 06:58 PM   #49
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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!
04-29-2014, 09:54 AM   #50
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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!
04-29-2014, 06:13 PM   #51
Trevor
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Thursday can't come soon enough.
05-01-2014, 06:27 AM   #52
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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
05-01-2014, 04:32 PM   #53
Trevor
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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.
05-01-2014, 07:15 PM   #54
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So were you getting the placebo then?
05-01-2014, 07:29 PM   #55
Trevor
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!!!

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')
05-01-2014, 07:30 PM   #56
Trevor
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And I got my new running shoes delivered today!

Everything is finally coming up Millhouse.
05-01-2014, 07:36 PM   #57
David
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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.
05-01-2014, 07:49 PM   #58
Trevor
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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.
05-01-2014, 10:13 PM   #59
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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.
05-02-2014, 01:50 AM   #60
Trevor
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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!
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