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Crohn's Disease Forum » Treatment » SSI Vaccine Trial


 
05-02-2014, 01:52 AM   #61
Trevor
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Too excited to make sense.

**every day next week
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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.
05-02-2014, 04:08 PM   #62
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My first appt is the 9th. I fly in on the 8th. Are you there then?
05-02-2014, 04:16 PM   #63
Trevor
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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.
05-02-2014, 05:47 PM   #64
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Awesome maybe we will bump in to each other!
05-02-2014, 05:55 PM   #65
Trevor
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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!!!

Can't wait!!!
05-03-2014, 08:13 AM   #66
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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
05-03-2014, 08:42 AM   #67
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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
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05-03-2014, 04:28 PM   #68
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Thanks, Tyler!

No questions at the moment, just a whole lot of finger crossing.
05-05-2014, 08:57 AM   #69
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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.
05-05-2014, 09:06 AM   #70
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Good luck Trevor

Are you currently tapering the prednisone or on a static amount for awhile?
05-05-2014, 09:23 AM   #71
Trevor
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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.
05-05-2014, 09:26 PM   #72
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Get your shot Trevor?
05-05-2014, 11:00 PM   #73
Trevor
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Sure did! Went very smoothly. Didn't feel anything at all, all afternoon, really.
05-06-2014, 06:18 AM   #74
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Trevor! That is sooooo exciting! Praying that relief from symptoms starts sooner than later! Keep the updates coming! 👍
05-06-2014, 10:18 PM   #75
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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.
05-07-2014, 09:57 AM   #76
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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!
05-07-2014, 11:54 AM   #77
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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.
05-07-2014, 05:56 PM   #78
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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
05-08-2014, 11:44 AM   #79
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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.
05-10-2014, 12:19 AM   #80
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Good luck Trevor! Pulling for you! Hope you see dramatic results soon!!
05-10-2014, 12:31 PM   #81
Trevor
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Still mostly just feeling 'funny'. Not a lot to report otherwise. But hey :-D funny is a darn good start.
05-11-2014, 02:48 AM   #82
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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
05-11-2014, 07:10 AM   #83
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Trevor, so you've gone from 3-6 loose bm's to no bm's and cramped and bloated?
05-11-2014, 09:27 AM   #84
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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.
05-11-2014, 10:10 AM   #85
Trevor
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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.
05-11-2014, 10:18 AM   #86
Trevor
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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
05-11-2014, 11:38 AM   #87
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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.
05-11-2014, 11:53 AM   #88
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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.
05-11-2014, 03:31 PM   #89
Trevor
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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

Oh and David, I would count them but no corn or peanuts on Paleo AI I'll for sure keep up with the details though!
05-11-2014, 04:02 PM   #90
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Thanks guys for sharing your info - keep all the details coming...they are great! Trevor - so you are currently still at around 6 loose bowel movements a day?
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