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Crohn's Disease Forum » Parents of Kids with IBD » 80% remission Rate in Pediatric Anti-MAP Antibiotic Study reported in 2013


02-21-2016, 05:26 PM   #1
irishgal
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80% remission Rate in Pediatric Anti-MAP Antibiotic Study reported in 2013

Hi All,

Some of you may know me from other treads discussing antibiotics in Crohn's, and know that I've had huge success with this after being told there was no treatment left for me. Wondering if any of you have considered this therapy for your children in light of this study:

http://ir.redhillbio.com/releasedeta...leaseid=797192

Short version is that Dr. Borody treated 10 children up to 9 years with a combo of antibiotics, probably clofazimine, clarithromycin and rifabutin, and achieved an 80% remission rate. That's not bad! The phase 3 trial of this started in 2014 and is ongoing. However, if my kids came down with this, I'd probably jump to this as a first line therapy due to this comment:

"Results of the retrospective analysis also showed a particularly close relationship between treatment with the anti-MAP combination and clinical response in patients nave to immunosuppression agents commonly used for treatment of Crohn's disease. Adverse events were mild with none necessitating dose adjustment."

Also, Dr. Borody said in a beststory.ca interview that he's achieved an almost 100% remission rate in treatment naive patients. Since other parts of the world have been treating pediatric patients this way for years with great success, and all the involved drugs are FDA approved, is there any reason not to consider this? It seems like the greatest benefit is when the patient does this therapy right from the start without other immunosuppressives to create resistance.

I'm interested in your thoughts and if parents consider this as a first line option for their kids, and if not, why?

As an aside, it's so difficult to deal with this disease as an adult patient; I can't imagine what you all go through with your children. My fervent hope is that your children all find relief from this terrible disease. Who knows, maybe I'll eventually be in your position since my kids have inherited my crummy genetics. This study at least gives me a bit of hope.
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Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
02-21-2016, 05:48 PM   #2
Maya142
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Short version is that Dr. Borody treated 10 children up to 9 years with a combo of antibiotics, probably clofazimine, clarithromycin and rifabutin, and achieved an 80% remission rate. That's not bad! The phase 3 trial of this started in 2014 and is ongoing. However, if my kids came down with this, I'd probably jump to this as a first line therapy due to this comment:
I don't think I'd put my kiddo on this yet (even though she is 19 and technically an adult). 10 patients is a TINY trial. I'd want to see much more research before trying it.

. Since other parts of the world have been treating pediatric patients this way for years with great success, and all the involved drugs are FDA approved, is there any reason not to consider this?
Where is this being used? All the parents from other parts of the world on this forum - the UK, Australia etc. have kids either of immunomodulators or biologics. Just curious.
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Mom of M (20)
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
02-21-2016, 06:24 PM   #3
FrozenGirl
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Not a parent but if I were I wouldn't jump to this for a first line treatment. Like Maya said 10 is a very very small trial. (Remicade data for children was extrapolated for adult use plus had a clinical trial of over 100 children for Crohns, in addition to the 1000+ people studied in adults)

In addition long term studies on this haven't been done which is a bigger concern for children especially in terms of studies on effects on growth and development.

That said I think it is somethings worth investigating.
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Dx: Ulcerative Colitis, Nov 2013
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Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
02-21-2016, 07:02 PM   #4
my little penguin
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Nope it's not going to happen
Trials are required by the FDA to be pediatric specfic now
10 in any trial regardless of a med trial is not even statistically significant in terms of data
Pediatric Crohns has proven to not be the same as adult crohns
Additionally the younger the onset ( below age 10) has been linked to more immunodefeciency and other causes of crohns.
Risking healthy intestine in a child who could have the disease for 80-90 years in my child's case not to mention growth /nutrional status
Just not going to happen


Add in many times someone doesn't need immunosuppressants or biologics due to mild disease so if they only chose child who weren't on these types of drugs who is to say their disease wasn't extremely mild.


Adults chosing treatment is completely different than a child whose disease tends to rapidly spread and change over 10 years plus historically is severe .


I am glad science is looking at different theories but it is just that at this point a theory among many .
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02-21-2016, 07:18 PM   #5
crohnsinct
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I discussed this with our gi and while he said it was interesting there wasn't enough data to consider it evidence based medicine and that he couldn't use it. Also said that so far it was a specific phenotype of disease that responds to map and until they could identify patient phenotypes reliably that he wouldn't be using such therapy. Interesting and worth watching though.

Thanks for posting us with the most recent reports. Good luck with your therapy!
02-21-2016, 08:01 PM   #6
irishgal
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Hi all - appreciate the info and feedback. Just wondering what the status was in the minds of the pediatric Crohn's world, since that's not my space. As for where this is being used, I believe it's mostly Drs. Borody and Chamberlin (Australia and US) that publically use this for pediatric cases as well as adults. Not sure on Borody's stats, but I know Chamberlin has treated at least 250 patients, not sure how many are pediatrics. It seems that lately Borody has been working more with kids from what others have said on forums that are closer to his camp, but again, no stats. You Re right, 10 is a very small number and a large scale double blind would need to be done before this treatment pathway was approved. I know of a few other docs who don't want to be named publically that treat kids with AMAT.

I actually met about 5 kids who were on AMAT at the Chicago symposium, and they were all doing well. They seemed to be completely symptom free and they were excited that they were growing! One of the highlights for me of that trip. So different than my childhood dealing with this.

Certainly, the point about treating kids with the least amount of drugs necessary to relieve symptoms is huge. The AMAT regime are some powerful antibiotics, and not to be considered lightly. The argument I've heard from one AMAT parent is that they carry less risk than biologics, which are more routinely being used as a first line therapy, in an attempt to blast the disease and achieve longer remission. This parent instead blasted the disease with AMAT hoping to achieve the same type of long term remission, which after a few years seems to be working. Long term studies are clearly necessary with all drugs, and those aren't available for this case.

It all gives me pause and makes me think about what's causing Crohn's. Crohnsinct - I fully agree that the term "Crohn's" is too broad and this should be divided into phenotypes, or versions, one of which may be better treated with antibiotics.

Really appreciate the postings and thoughts. Wanted to see what other parents thought about this and if anyone had a child on it. Would be very interested to hear from someone who tried it with their child and it DIDN'T work, since the feedback I've heard so far from the few parents I've talked with who have tried it has been all positive. Be well friends!
02-21-2016, 08:32 PM   #7
Maya142
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I don't think there is anyone with a child on it on this forum but I could be wrong.

My daughter has done VERY well on biologics and we are so grateful for them.

I do wonder how kids tolerate the antibiotics - I know that she has a very hard time with antibiotics and has even had CDiff once.

She has never had any side effects from biologics and neither has my older daughter (6 and 7 years on anti-TNFs).
02-21-2016, 09:34 PM   #8
my little penguin
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I believe supportivemom had her dd on a three abx cocktail its in her siggy
It failed her dd as well as all other meds

I think this thread covers the abx trial

http://www.crohnsforum.com/showthread.php?t=67010
02-21-2016, 09:41 PM   #9
Catherine
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I think this therapy maybe option for Australian parents of children with mild to moderate Crohn's Disease. Our options are less than those of American parents as our children are unlikely to qualify for biologics for years. Especially kids without bowel symptoms.

So my research would be on whether the risks with this treatment are greater that Imuran.

Prof Borody work is well known in Australia. He was the first to use triple therapy for peptic ulcers.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-21-2016, 10:27 PM   #10
irishgal
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penguin - just looked at supportivemom's thread. Wow, they've been through a lot. I hope her daughter is doing well after surgery. Interesting triple antibiotic combo. I've not seen that one used yet, though flagyl plus cipro is approved for Crohn's. I'll have to look into doxy and vanco. Also, looks like her daughter had UC? From my research, Anti-MAP doesn't work well in UC. Not sure why, but I know the mechanism is different.
02-21-2016, 10:47 PM   #11
malorymug
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My last post disappeared, grrr. I think anti-MAP looks exciting and promising. I look forward to seeing more trials.

My child was treated for h pylori prior to his crohn's diagnosis. It was horrible. He did the lansoprazole, amoxicillin, and clarithromycin (LAC) for a week and then levofloxacin, amoxicillin, and lansoprazole (LAL). He was double over in pain and completely incapacitated. I would be super hesitant to try any of the triple therapies again.
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
02-22-2016, 07:51 AM   #12
irishgal
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Malorymug: You are certainly right about the initial side effects of the antibiotics. It was a rough first week for me, then I gradually started feeling better. I started them all at once though, which is my guess about how h.pylori treatment would go as well. RedHill tapers up in adults to try to minimize the side effects. I know some can't tolerate the side effects so they have to discontinue. I think it was the clarithromycin that got me, since I'd previously throw up the erythromycin they'd give me for various unrelated ailments. I knew just from the name that it was going to be a rocky ride, but now I have no side effects so my body adjusted. Probiotics helped lessen the nausea as well. The docs actually told me that feeling like I had the flu was positive since it showed that the therapy was working. Uuugh.

I look forward to more trials on AMAT too. Hope your son is doing well!
01-17-2017, 08:02 AM   #13
SupportiveMom
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I believe supportivemom had her dd on a three abx cocktail its in her siggy
It failed her dd as well as all other meds

I think this thread covers the abx trial

http://www.crohnsforum.com/showthread.php?t=67010
Yes that antibiotic cocktail failed my dd, but I know a few that it worked well on. It was a scary thing to try. She had no immune system at all doing that!
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