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Crohn's Disease Forum » Treatment » SSI Vaccine Trial


 
08-15-2014, 06:02 PM   #301
David
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You do understand that you DO get the real SSI at a certain point even if you get the placebo initially, correct?

If I was in your place:

1. If the stricture was due to inflammation, I would try SSI before I let them do surgery and I would be willing to go off Remicade to do that. If you have active inflammation with Remicade, in my opinion it is not working well enough and it is worth trying something else.

2. If the stricture was due to scarring and I had active inflammation elsewhere, I would do SSI before the surgery in an attempt to reach remission as that often leads to better surgical outcomes. I would be willing to go off Remicade due to that.

3. If the stricture was due to scarring from old inflammation but I was in remission from the Remicade otherwise, I might just stick with the Remicade.

That's just me though. We each have to weigh our own countless variables and hopefully we have doctors that can help us do that.
08-15-2014, 06:51 PM   #302
Poppysocks
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You do understand that you DO get the real SSI at a certain point even if you get the placebo initially, correct?
Yes, I understand. Just a little flustered after the colonoscopy today.
If I was in your place:

1. If the stricture was due to inflammation, I would try SSI before I let them do surgery and I would be willing to go off Remicade to do that. If you have active inflammation with Remicade, in my opinion it is not working well enough and it is worth trying something else.

2. If the stricture was due to scarring and I had active inflammation elsewhere, I would do SSI before the surgery in an attempt to reach remission as that often leads to better surgical outcomes. I would be willing to go off Remicade due to that.

3. If the stricture was due to scarring from old inflammation but I was in remission from the Remicade otherwise, I might just stick with the Remicade.

That's just me though. We each have to weigh our own countless variables and hopefully we have doctors that can help us do that.
Thanks David. Your words are heeded.

I do have active inflammation, my current CRP is around 4.7 and my ESR around 48. I don't believe I am in remission even while on the Remi. To be honest I have no idea what remission even feels like, my BM's have been unformed for so long. I guess my appointment with the surgeon in the near future and my biopsy results will determine whether the stricture is from active inflammation or old inflammation that scarred.

Qu has received my medical records and Doctor Bressler is looking through them to see if I will be a good patient for the study. I should be informed shortly on whether they want to proceed with me as a patient.

Last edited by Poppysocks; 08-15-2014 at 07:10 PM.
08-16-2014, 12:14 PM   #303
David
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Please keep us updated with what Qu and your colorectal surgeon say.
08-18-2014, 02:48 PM   #304
sir.clausin
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Ok, so I am heading over to Vancouver for a second visit. This time I will get the real deal, so typical that I got the "sugar water" it has made me crohns worse, being out any medication for this time. Anyhow, letīs see how this will get.
08-18-2014, 02:57 PM   #305
worriedboy
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Good luck, fingers crossed...
08-18-2014, 03:43 PM   #306
Lady Organic
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I pray for you and for all of us that it will work and fast so your CD doesnt keep aggravating. Thanks for participating.
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''UC-like Crohn's'' since 2001:
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past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
08-18-2014, 03:45 PM   #307
Trevor
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Things are still good/improving here sir.clausin - I am hoping the unpleasantness of the placebo will be as worth it for you as it has been for me!
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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.
08-26-2014, 03:35 AM   #308
rollinstone
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How you doin seb?
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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.
08-26-2014, 07:31 AM   #309
sir.clausin
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Just woke up, last day was my first day of the open label, and I think I am on the actual stuff, not the placebo! Happy times
08-26-2014, 08:58 AM   #310
anti_map
 
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When will this vaccine be available?
08-26-2014, 09:20 AM   #311
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Hey.... is there any improvement?
08-26-2014, 05:45 PM   #312
Trevor
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Just got home from an epic weekend of wedding photography ! It's been almost a year since I shot a wedding and I haven't gone and done any events since November. It was a huge milestone for me mentally and I am super pleased to report that today may be my best day in living memory.

So happy to hear you're on the right track Sir.Clausin !!!
08-26-2014, 05:51 PM   #313
rollinstone
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Man, so happy to hear that! Can't wait for this trial to be spread around the globe, I think they're on to a winner! How are the rest of you going? Wends, bees etc
08-27-2014, 10:37 AM   #314
David
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When will this vaccine be available?
This treatment won't be available for those outside of the clinical trial for at least a couple years. They have to finish this trial, do a phase III trial, then get final approval if the data supports getting approved which hopefully it will.
08-27-2014, 11:53 AM   #315
tzvia
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I can't wait until it's available. I tried to to get into the trial but I was rejected because my stricture was too bad. It was sooooo disappointing. Now I'm on humira but it doesn't seem to be doing much.
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09-07-2014, 08:42 AM   #316
David
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How's everyone feeling? Any updates?
09-07-2014, 01:45 PM   #317
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Hi all,

Thought I would share my story. I was diagnosed with CD in 2012 during my last year of medical residency. I had learned about IBD during med school and thought it was mainly just some abd pain and loose stools. Boy was I wrong. I've suffered so much with flu like symptoms and severe fatigue. I tried controlling it with prednisone but the side effects were just about as bad as the disease at times. I refused biologics or immunosuppressants. This lead me to the SSI vaccine trial. I was in the placebo group for the first phase and have now been on the real thing for about 6 weeks. I've noticed some improvement in my symptoms especially the pain and energy reserve. I used to have a constant knot in my right lower quadrant of my abd that is mostly gone. My stools have definitely become denser and more formed. I still wouldn't qualify them as normal but improved. I still have some burning with defecation occasionally. I have gained almost a pound each of the past 6 weeks.

I'm grateful I stumbled on crohns forum. Look forward to hearing others stories and updates on their progress as well. Thanks to all of you who are also participating. I think this will be revolutionary and certainly better than the current "treatments" being offered.
09-07-2014, 02:05 PM   #318
David
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Thanks for taking the time to share your story cicconeca! Out of curiosity, why did you decide to refuse immunosuppressants and biologics? I hope your symptoms continue to improve and you are able to reach deep, stable remission!
09-07-2014, 03:13 PM   #319
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Hi David,

Thanks for your reply.

To be honest, some of it was timing. I started looking for alternatives to the standard treatments. I held out and got enrolled in the study.

My main concern with Imuran/6-MP was the nearly fourfold increased risk of lymphoma, at least in preliminary studies.

I refused biologics with the concern of drug-induced lupus and worried about decreased efficacy over time.

If SSI had not been available in all reality I may have had no choice but to start other traditional meds.

The med school I attended always encouraged us to question the status quo and to look for more natural therapies with less side effects and lower risk profile. To me SSI therapy is better in so many ways. It's definitely not an over night cure, but my feeling is you don't develop CD overnight either so it will take time. And for the first time this therapy offers hope of cure instead of just shutting down the adaptive immune system and masking symptoms.

Hope I answered your questions.
09-07-2014, 03:55 PM   #320
David
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It does indeed answer my questions.

Please keep us updated as to how you're doing
09-07-2014, 04:54 PM   #321
cicconeca
 
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Thanks David, will do. Anybody else out there with any updates as they are progressing through the trial?
09-08-2014, 08:24 PM   #322
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Hi All cicconeca, glad that you found the trial and that you found us Welcome! I have a very similar story to you.
Anyway, here is my update: I just got back from my week 16 visit in vancouver. I am doing pretty well. I am not in remission but i am better than I have been. I still have up and downs but my downs have not been so bad and my ups feel like remission sometimes, which is such a wonderful feeling. I really wish that I had been able to achieve sustained remission with this study quickly, but it is possible that the positive affect will continue to build and i could still get there. time will tell. for those of you who want all the details, my bm's are usually pretty formed, 1-2 per day with moderate urgency and mild pain, no blood, my fissure is still healing (the formed stool doesn't help that) i still have stomach pain sometimes and bloating with gas but those have improved slightly. i still feel fatigued and just generally yucky some days but not everyday anymore. still no joint pain.
last time i wrote i was battling a major head cold, that went away finally and now i am battling a lovely uti. i hate antibiotics but took them after a few days of terrible pain and they didn't even work! ugh hopefully that will resolve soon and its not something related to the crohns or make it worse!
09-09-2014, 06:06 PM   #323
Poppysocks
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So as of now, I am not going to be participating in the trial. There's too much of a chance that I get the placebo and get extremely sick while off remicade.

Remicade is not fixing me, as evidenced by my latest colonoscopy, but it's keeping things from becoming unbearable, therefore I can't really take the chance. Sucks this thing is so far away from being approved for market use.

Oh well for now.

edit - plus side is I got a fecal cal test done for the first time ever and my level was 1240. Not so good lol. CRP is 15.

Last edited by Poppysocks; 09-09-2014 at 07:02 PM.
09-09-2014, 09:25 PM   #324
rollinstone
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How's everyone else travelling? Been a bit quiet which hopefully is a good sign that you're doing better and getting on w life?
09-10-2014, 02:45 PM   #325
David
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Wendsjoy,

That's awesome that you saw some significant improvement! I wish you were able to stay on the treatment longer. I hope things continue to improve going forward for you. Sucks about the UTI though
09-10-2014, 02:47 PM   #326
David
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Poppysocks, with a fecal calprotectin that high, your doctor needs to change SOMETHING up. I don't know if duration between your Remicade dosages can be shortened as I don't know your time between dosages, but keeping your treatment regimen as is would be a big mistake in my opinion.
09-10-2014, 03:18 PM   #327
cicconeca
 
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I'm curious about those who were previously in the compassionate use program, especially as to the timing of their recovery. Did it take weeks or months and at what point was stable remission achieved. I've heard Dr. Sutcliffe say it's possible it may take at least 4 months of therapy for a lasting clinical response. I know Tyler, Natalia and Colleen have participated in this thread before. Is there any chance you guys could go more in detail about your recovery timeline?
09-10-2014, 05:54 PM   #328
Poppysocks
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Poppysocks, with a fecal calprotectin that high, your doctor needs to change SOMETHING up. I don't know if duration between your Remicade dosages can be shortened as I don't know your time between dosages, but keeping your treatment regimen as is would be a big mistake in my opinion.
I know it's high. Believe me, I'm looking for all other possibilities right now.

I have been thinking of adding Methotrexate to the mix, and going back to monthly remicade infusions. I also have an appointment with an immunologist next week to talk about ivig. Believe me, I'm not just sitting around. GI docs around Naples are all horrid.

In addition to all that, this whole year I've been experimenting with diet, trying to spread out my remicade's as much as possible to see if it was helping. I've at least found out I'm very sensitive to dairy. I broke out in Shingles at the end of last year probably due to the Remi, and I've been trying to spread them out as much as possible. Prior to the Shingles the Remi wasn't keeping my inflammation markers down either, and I hadn't had a formed bowel movement in as long as I could remember. I added Mesalamine enemas to the mix and they've improved the formation of my BM's greatly. Hasn't fixed the sticture or inflammation though obviously.

Doc said he was going to set me up with a colorectoral surgeon but haven't heard from him. Not that it matters, I know what the surgeon is going to recommend, and I'm not doing it. Don't care.

Weird thing is, is I actually feel pretty good. Nothing is hurting as long as I stay away from certain foods (dairy). Doesn't hurt when I go to the bathroom. If I push out my Remi's past 7-8 weeks it starts to get painful and I really have to force myself to eat. My appetite has been very lacking the past few days, which is probably a sign of the inflammation. Other than that though I feel good. Of course I say this, I haven't been "truly" healthy in so long I don't even know what it feels like.

Sorry to hijack SSi Thread. Carry on. Wish they could put ssi on fast track status or something.

Last edited by Poppysocks; 09-10-2014 at 07:07 PM.
09-11-2014, 03:05 PM   #329
Trevor
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Still here too

Feeling pretty great still, same old ups and downs but still trending up. Been a stressful month or so with work but I survived and almost have caught up enough to focus a little more on recovery.

I'm really just holding my breath. Things right now are really good and if they keep getting better that's pretty amazing. Just can't help thinking it's too good to be true.

I know, I know, think positive. If only it were that easy, haha.

Still iffy joints. Fingers and toes mostly, wrists and ankles occasionally. Does seem very weather dependent but is mild and 100x improved from the last couple of years.

Odd stomach pains still, cramps, gurgling (less noise and less often but still there) and the occasional bit of gas or heartburn but other than the pain/cramping I probably rate lower than your average 20-something North American on that scale.

My weight has been up and down like crazy since this time last year without a real rhyme or reason at times but it's starting to seem like it's normalizing as well and I am gaining or loosing weight in relation to thing like food and exercise again.
09-11-2014, 03:33 PM   #330
David
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Trevor, did they by chance give you any of your lab results during all of this?
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