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Crohn's Disease Forum » Treatment » Anti Map Therapy


02-15-2012, 06:15 PM   #1
BillthePill
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Join Date: Feb 2009
Location: Saint Paul, Minnesota
Anti MAP Therapy

I havent posted here in a long time but it looks like I will be starting this. I tried to do a search for past threads on the topic but it didn't seem to work. Anyways, I'm wondering if anyone here has tried it. I was given three scripts yesterday: Clarithromycin, Rifabutin, and Clofazimine. But there is a problem, it doesn't look like I'll be able to get Clofazimine, seems like its almost impossible to get in the US unless under very specific circumstances. My GI prescribed the three based off the Australian study... But it looks like either Levaquin or Ethambutol are used in its stead. Can anyone confirm this? I left a message with my GI but she is out until Friday.

Any insight would be greatly appreciated.

Last edited by BillthePill; 02-16-2012 at 12:17 AM.
02-16-2012, 04:59 AM   #2
DustyKat
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Location: New South Wales, Australia
Hey Bill,

I can't answer your question and I have no experience with this but there is a thread about MAP with loads of links in it. Perhaps one of them contains the info you are looking for??...

http://www.crohnsforum.com/showthread.php?t=28153

Dusty. xxx
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Mum of 2 kids with Crohn's.
02-16-2012, 02:47 PM   #3
BillthePill
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Join Date: Feb 2009
Location: Saint Paul, Minnesota
Thanks Dusty, that does help.

Has anyone on the forum personally tried this treatment? or anyone recall a member doing this treatment? I know I remember first reading about the treatment here, a few years ago... Anyways I would love to hear from people with firsthand experience, or any other unique/ relevant info that might help.

It might take a while to get all the meds because I'm guessing the insurance company isn't going to want to cover the meds at first. But like my doctor said usually a simple letter with a Mayo Clinic letter head usually moves things along... I hope. So, that said, when i get everything squared away maybe i could start a thread with my 'story' and document how things go.

thanks again, Bill
11-30-2013, 05:02 AM   #4
Azaelia
 
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Join Date: Oct 2012
Location: Dubbo, New South Wales, Australia
Hey, I am in Australia and on Anti-MAP!

How cool that there are other people on it! I am taking 4x Rifabutin, 4x Klacid, 100mg(?) Imuran, 2xMetronidazole and 1xClofazimine a day.

I am on the full phase now and it is healing up the infection in my gut but I still have yuck symptoms. I have had moderate to severe Crohns for about a year now without any full remission. I only started anti-MAP about 6 months ago after visiting the Centre for Digestive Diseases in Sydney. Before that I was about to start Humira (which terrified me!)

Any questions, ask away.
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Sept 2012 diagnosed but symptoms before that!
On Imuran/Azathioprine from diagnosis, bit of Pred initially
April 2013 On full Anti-MAP through Centre for Digestive Diseases, Sydney: Rifabutin, Clofazimine, Klacid, Imuran (Azathioprine), Metronidazole (Flagyl) for 9 months with no real change
January 2014, stopped Anti-MAP & left CDD
Feb 2014 two strictures and severe perianal disease.
March 2014 Ileostomy and planned Humira soon.
11-30-2013, 07:24 AM   #5
rollinstone
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Hey, I am in Australia and on Anti-MAP!

How cool that there are other people on it! I am taking 4x Rifabutin, 4x Klacid, 100mg(?) Imuran, 2xMetronidazole and 1xClofazimine a day.

I am on the full phase now and it is healing up the infection in my gut but I still have yuck symptoms. I have had moderate to severe Crohns for about a year now without any full remission. I only started anti-MAP about 6 months ago after visiting the Centre for Digestive Diseases in Sydney. Before that I was about to start Humira (which terrified me!)

Any questions, ask away.
Hi azaelia, I'm in Queensland, that's cool that your on anti-map, I'm on remicade, I am planning on traveling to Sydney to get into the CDD at some pt if the remicade doesn't do the job but so far it's working well, how is the anti map going? Are you noticing improvement? Hopefully it gets you into remission!
11-30-2013, 11:27 PM   #6
Azaelia
 
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Join Date: Oct 2012
Location: Dubbo, New South Wales, Australia
Hi Joshua,

The Anti-MAP was improving me, I don't feel heaps good at the moment but that may be because I'm too impatient. I do like that it is not as harsh as some other medications because it seems to be mostly antibiotics.

The people at CDD are very good though, so I trust if anyone can get you well it would be them!

If Anti-MAP doesn't work I will be on Remicade. I gather it goes in your arm every now and then??
01-15-2014, 09:56 AM   #7
rollinstone
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Sorry for such a slow response, yes remicade is an infusion, through the arm every 8 weeks, when you say that it's clearing up the infection but you still have yuck symptoms, can you elaborate more on the symptoms you are having? Have they improved?
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