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08-06-2013, 02:31 PM   #1
Mehita
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Future of IBD Meds?

DS just asked me if I really think there will be a cure for Crohn's soon. I said yes, hopefully in his lifetime. He's only 13, so pretty good odds, right?

Then he asked what new meds are being worked on. Does anyone have a quick list? Doesn't matter if its pediatric or not. By the time some come out he'll likely be an adult anyway. I just want to tell him something... give him some hope.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
08-06-2013, 02:45 PM   #2
Tesscorm
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Q-Biologics (or some similar name) is current running a trial for SSI:

http://www.crohnsforum.com/showthread.php?t=36119


Recently read of another trial for Traficet-EN. I know virtually nothing about it other than it's currently in Phase III trials - here are two links:

http://www.crohnsforum.com/showthread.php?t=10424
http://www.chemocentryx.com/product/overview.html


I believe stem cell transplant has also had success. There is a member here, effdee , who posted his experience in going through this and, at his last post, two years post transplant, he continues to do well.

http://mypsct.blogspot.ca/

I'm sure there are others but these are the only ones I know.

But, great question!! I'm looking forward to seeing more answers!!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-06-2013, 02:53 PM   #3
Crohn's Mom
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Great question !
Thanks for the links you provided Tess

I'll also be looking forward to more answers, as we have no idea where we're going next if Remicade doesn't do it for Gab.
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
08-06-2013, 03:07 PM   #4
Maya142
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How about Stelara? Or Vedolizumab?
I know there is a new biologic, Xeljanz (tofacitinib, that's a pill and was just approved for RA. According to my daughter's rheumatologist, it will be studied in Crohn's and Ankylosing Spondylitis too. There's also supposed to be a drug that "blocks" (that's probably not the correct term) IL 17 that will be approved in the next two years for Ankylosing Spondylitis and I think (but I could be wrong about this one) Crohn's.
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-06-2013, 06:24 PM   #5
my little penguin
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http://www.medscape.com/viewarticle/763862

ibd drugs in the pipeline by medscape

Mayoclinic
http://www.mayoclinic.org/medicalpro...-pudd0412.html


ccfa stuff
http://online.ccfa.org/site/DocServe...df?docID=17225
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08-06-2013, 06:35 PM   #6
Brian'sMom
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When Brian was 6 yrs old We were told there would be a cure in 10 years...recently I said to the GI...well, he's almost 14...cure coming soon? She said, 10 years. UGH
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symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
08-06-2013, 07:44 PM   #7
Twiggy930
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I have high hopes for the SSI by Q Biologic. I'll attach a news story about it from a couple of months ago.

http://globalnews.ca/news/606100/new-clinical-trial-for-Crohn's-disease/
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
08-06-2013, 08:58 PM   #8
kiny
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Or Vedolizumab?
Completely failed in trials, in the first studies it barely beat out placebo, but it was statistically insignificant, in later trials it actually did worse than placebo.

Tell me if the huge pictures bother btw, unless you have access to journals it won't show up in a link. So I can't just "link it".

And I can't really make it smaller because the text loses too much sharpness then.



Last edited by DustyKat; 08-09-2013 at 11:35 PM.
08-06-2013, 09:09 PM   #9
killcolitis
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Vedolizumab seems very promising for UC, not for CD. I'm very hopeful about the Qubioligics treatment as well. Hope it's not too long before it's accessible (results so far are quite promising).
08-06-2013, 09:15 PM   #10
kiny
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I would say something about the QuBiologics but they're very unspecific about what is being injected, at least they were, haven't bothered to check so maybe someone can tell us.
08-06-2013, 09:23 PM   #11
rollinstone
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they use a strain of e.c not sure which 1, either way, it supposably stimulates new macrophages in the adaptive immune system.
08-06-2013, 09:24 PM   #12
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I would say something about the QuBiologics but they're very unspecific about what is being injected, at least they were, haven't bothered to check so maybe someone can tell us.
I did the first steps to be in the study, they've sent me the consent form in which they stat it is E. Coli, not alive. I'm now skeptical as to why such a specific substance should even work at all. I understand their rational, but I have my doubts.
08-06-2013, 09:25 PM   #13
killcolitis
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Kiny we were considering this for our daughter and have spent a lot of time talking to them - to be honest, I can't remember (an ecoli vector but I can't remember what it contains and tbh it's over my head). But considering it's been cleared for trials and so far there haven't been any serious side effects and there aren't likely to be (I believe it's been used extensively by them in cancer patients) - based on that, if it works and considering the options I would take it. Having said that, nowI'm curious as well.
08-06-2013, 09:28 PM   #14
killcolitis
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Yeah, something about microphage production - they site NOD2/ATLG extensively in their information package (both of which my daughter has, so I am very keen to try it).
08-06-2013, 10:13 PM   #15
rollinstone
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Hi kill colitis, could you please elaborate on the NOD2 etc? I Havnt even looked into that for me, those are genes associated with cd?
08-07-2013, 10:04 AM   #16
Jmrogers4
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NOD2 is associated with CD specifically higher chance of fistulizing/stricturing disease at least according to Jack's GI. Can't remember about ATLG I would have to look at his prometheus prognostic again as it seems it was on there. Will have a look when I get home as I'm curious now as well
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
08-07-2013, 10:48 AM   #17
killcolitis
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Don't want to hijack this but NOD2 is highly correlated with CD (and my daughter has a "UC" diagnosis) and there are three NOD2 SNPs which they've studied - one is correlated with stricturing disease but the others are not. They seem to be correlated with ileo colitis but again there's some research which shows that certain one of these is not. Even though it's highly correlated with CD there's not been a ton of research on it, more like subsequent studies referencing previous ones.
ATG is weaking correlated with CD, though there's been quite a lot of research on it. It's not a mutation but a polymorphism.
One reason the Qubiologics therapy resonates with me is because it references these genes and seeks to address them, so it's well worth a shot for my daughter if she can hang on to her colon until we can get it.
Joshuaa, I wouldn't worry too much about the genetic stuff since you already have a CD dx. It's particularly relevant to me because of the UC dx. This info has persuaded me to try to treat as aggressively as possible (currently on 4 weekly remi at 10mg/kg) instead of going to surgery (my preferred option if it were clearly UC. All other tests including three sets of scopes, biopsies etc say UC).
http://www.researchgate.net/publicat...acterial_entry
08-07-2013, 11:42 AM   #18
Brian'sMom
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Jacqui, Is the ATLG from the prometheus test in reference to the NOD2 gene? We got results from this test in 'he doesn't have antibodies to humira' but I haven't actually seen the report.
08-07-2013, 11:47 AM   #19
Jmrogers4
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It's the prometheus prognostic test, different test then testing for antibodies. It tests for genetic markers/mutations for Crohn's Jack had it done even though we knew he had Crohn's as his GI felt he was missing something or there was something we were not seeing and wanted to get a bigger picture of his Crohn's.
08-07-2013, 12:25 PM   #20
Johnnysmom
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We were told there would be a cure in my son's lifetime too.

It was explained that it would happen for certain "sub types" of crohn's first. A Dr. at our GI clinic said they are starting to type crohns and get the treatments more specific for disease course. Anyone have anymore info on this? I apologize if this info is in the links above, I haven't had a chance to read them all.
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08-07-2013, 12:39 PM   #21
Johnnysmom
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I didn't see LDN listed in any of the links. Is it not considered new for crohn's treatment? Are there any trials going on for LDN?
08-07-2013, 12:47 PM   #22
Jmrogers4
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TNI BioTech has acquired the patent rights to LDN and are planning a Phase III trial but I have not seen any further information on it. Here's a blurb from their website
"TNI BioTech is extremely pleased to acquire the exclusive rights to low dose naltrexone and other opioid antagonists for the treatment of inflammatory and ulcerative diseases of the bowel," stated Noreen Griffin, CEO of TNI BioTech. "We believe that low dose naltrexone has the potential to provide significant relief to those who suffer from Crohn's disease or other auto-immune disorders of the bowel." Low dose naltrexone has already been evaluated in two randomized placebo-controlled phase II trials, one for adult patients with Crohn's disease and the other for children with Crohn's disease by Dr. Jill Smith. Naltrexone in low dose has been well tolerated in almost all patients, and it showed significantly greater treatment efficacy than the control group in both trials. TNI BioTech is now planning to meet soon with the FDA to design and implement pivotal phase III trial(s) for treatment for patients with Crohn's disease using naltrexone in low dose. A platform immunomodulatory technology, naltrexone in low dose also is expected to be clinically tested for treatment of other immune-mediated or immune-deficient diseases, for which the company has previously acquired additional patents.
08-07-2013, 12:49 PM   #23
Jmrogers4
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Here is another more recent blurb from their website so it looks like they are moving forward hoping for early 2014 according to article

TNI BioTech Receives Meeting Minutes from FDA Type C Meeting on Naltrexone HCL for the treatment of Crohn's Disease
BETHESDA, MD., July 23, 2013 TNI BioTech, Inc. (OTCQB: TNIB) is pleased to announce that on July 17, 2013 the company received the official minutes from its recent Type C meeting held June 26, 2013 with the Division of Gastroenterology and Inborn Errors Products regarding the clinical and regulatory aspects of the proposed Phase III development program and future 505(b)(2) application for Low Dose Naltrexone (LDN) in the treatment of adults and pediatric patients with Crohn's Disease. TNI BioTech, Inc. also received official written responses regarding CMC and non-clinical aspects of the LDN development program.

Last edited by Jmrogers4; 08-07-2013 at 12:58 PM. Reason: added more info
08-07-2013, 05:09 PM   #24
Kev
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LDN new.... I guess it depends on your point of view. Here we are... August, 2013. I've successfully held my disease (I'm lucky enough to have both Crohns and Ulcerative colitis) at bay since November of 2007... so, essentially.. 5 3/4 years. based on a study posted in the American Journal of Gastro-enterology early in 2007 (June or July, I think).

There have been 2 studies on treating IBD in adults with it... and the results mirrored each other... very positive, high success rate, either little or no side effects (minor ones, sleep disruption, feeling wired, vivid dreams... I had this last one... unfortunately, it didn't last long... imagine, I'm talking about a 'side effect' that I regret having passed.. as for the others... nuisances, pains in the proverbial.. but none of any life threatening note... you know what I mean? The sort of thing that, if the drug was giving you your life back, paying the price of these side effects is really a no brainer.. or at least that is the way I look at it).. There was also a pediatric trial... again, the same general results. A safe, effective way of treating IBD in young and old. The only change in the pediatric study was that, in the case of children, dosages were based on body size.. by weight. I don't have the numbers... or the formula.. but I'm sure someone on here has the info.

Look, this isn't my 'mission from God' as it were... but my honest to goodness opinion. If I didn't have this disease, and didn't have all these years of success and experience with it... but were just looking at high success rate, high safety factor, low risk factor, I would independantly advance the theory that LDN should be the absolute 1st drug to look into. I don't own the company (nor any part of it, dammit) and they don't pay me royalties for talking like this. In fact, just the opposite. I spend $86 CDN every 3 months. (Hmmmm, you think with all the good word I spread, I'd at least be entitled to a discount). Kidding aside, I can't think of a safer, saner choice to fight off IBD, OK?
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Dx'd July, 2006
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08-08-2013, 05:15 PM   #25
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I'm really excited to see what happens with Xeljanz. I think it seems really promising for IBD. And it's a pill, so that's an added benefit. Pills are easier to take than injections or infusions.
08-09-2013, 08:41 AM   #26
Brian'sMom
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why are pediatric gi doctors so opposed
to even talking about LDN if its so fantastic?
Its like bringing up a bad topic at the appts.
Ours even kinda does an eye roll. Its not
even discussed. I've asked a few times and
its like they are "REALLY??...Move on..."
08-09-2013, 09:07 AM   #27
Tesscorm
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Yeah, that's confused me too.

I know there's lots said about doctor kickbacks, perks, etc. but I really have a hard time believing that doctors would ignore a safe treatment simply due to perks and pharma company influence.

On the other hand, the immunosuppressants, biologics, 5-asa (whether they work or not) are well known, well studied, etc. For a doctor to prescribe LDN, he/she is going out on a limb... if the patient worsens, it's their reputation... ie why would you give your patient LDN when you have all those proven treatments at your disposal? Is that a risk the doctor wants/needs to take?

It would be interesting to know how long it took for GIs to commonly use EEN as a treatment... we know, even with it's track record and studies, many GIs still don't believe it works.
08-09-2013, 09:27 AM   #28
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So what baffles me is Jack's GI who brought up LDN as an option, when we talked about EEN says he wasn't sure that it worked at least from the studies he read. I don't think he routinely prescribes LDN as from what he has said Jack was the only one doing really well on it from the handful of his patients that were on it, but based on Jack if someone wanted to try it he would but I don't think he brings it up anymore.
08-09-2013, 09:36 AM   #29
Tesscorm
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If I remember correctly, Jack was doing well but, given Jack's age, due to drug risks in young boys, his GI suggested trying LDN??

There's always one rebel in the class! I imagine he'd read good things and thought Jack was stable enough to try. He could justify his decision by saying his patient was stable and the risks of 'undertreated' crohns were less severe than the risks of adding stronger meds given Jack's circumstances (age, sex, disease activity).

IDK???
08-09-2013, 09:56 AM   #30
Jmrogers4
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I think you hit the nail on the head Tess, he was doing well (not 100%) and we couldn't use MTX which is apparently what he generally does for teen boys that are doing well and don't need biologics. In his words he likes to keep the biologics in his back pocket so to speak.
Looks like we may be moving towards biologics for the hubby though, His liver levels are way out of wack so Imuran may not be an option for us anymore - goes for another blood test in 2 weeks so we'll see. His GI won't even look at LDN but I think I may go to his next appt. and bring all Jack's stuff and see what we can do. I'll push for it harder then the hubby.
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