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Rifabutin, Clarithromycin & Clofazimine

In recent years I've been on Remicade, then Humira, and now Cimzia, with only a little improvement. I've also tried 6MP, which made me feel awful. My primary care physician recently said he wanted me to try the combination of Rifabutin, Clarithromycin & Clofazimine. Has anyone tried this, if so what were the results.

I haven't tried this myself, but have been desperately trying to find a Dr that would give it to me. The fact that your doctor suggested it gives me hope that one day I'll find one who is agreeable. Good luck! Hope it works for you!
Mark - oh my gosh, your PCP brought this up as an alternative!! That is awesome news. This has traditionally been a treatment that the docs reject wholeheartedly, despite overwhelming evidence to the contrary. It's nice to see the tide turning. This is the RedHill combo, which is probably the best. In the US they substitute levofloxacin for the clofaz, since it's easier to get, but it may have more side effects. I'm was on the US formula and my Crohn's went away completely. I had issues with the levo, dropped it, added LDN and have been fine for 16 months. Check out this site for all the research and FAQs: TheCrohnsInfection.org. You're welcome to join our private Facebook too and ask others who have tried this combo about it.

You'll feel gross at first, especially if you start it full strength, but then hopefully you'll start getting better and better over 3-4 months. Also, you can get a test through John Aitken's lab to see if you have the mycobacteria this is supposed to treat. Most Crohn's patients are positive. Good luck, and feel free to contact me since I've been through this. Encouraging that your doc is recommending it. Finally!!!
stylin - if you can, get a passport, go to Dr. Chamberlin in New Mexico. I know you've struggled to find someone in Canada and their health system is different than ours, so you are hemmed in to the docs and long waiting times. Hope you're hanging in there.

Thanks for your comments! I haven't started the treatment yet. I've been checking in with my gastroenterologist. He doesn't seem too excited about it. I am changing gastroenterologists next week. I'll see what the new one says. I think that I'll give it a try whatever they say. I've been doing the TNF shuffle for the last few years... You know...Remicade...then Humira... then Cimzia... Before all that 6MP. I have to admit I'm getting a little sick of doctors reaching into the same toolbox and pulling out bigger hammers to use on me.

I'd like to hear more about your use of LDN with the anti-MAP regime. I brought up LDN to my old gastroenterologist, with study results. I got a very interesting answer. The studies I cited were done in the U.S. He told me: " I now her, she is an excellent doctor and a very good scientist, but I've never heard of this, so I won't prescribe it for you." DISAPPOINTED!!!

I hope the new doc. might help out
Hi Mark - Yes, I know what you mean about the TNFs. I got sick of them not really making me well. They'd help a little, but at what cost! I had a cold all the time. GIs generally won't help you with AMAT. I don't know why, but they are extremely averse to it - more so than any other type of doctor. Then some have never heard of it, which seems crazy to me since there is 20 years of research on it.

The LDN was recommended by my integrative health MD, and she showed me the studies out of UPenn. I asked Dr. Chamberlin about it, and he said the few patients that he treated who used it in combo with AMAT seemed to do extremely well. I was waiting on it until necessary, but started it when levo failed. Here's my theory: if you have a mycobacterial infection causing your Crohn's, which is a combo of pathogen and faulty immune system, why not treat both. The AMAT wipes out the pathogen and the LDN rehabs your immune system to hopefully work better. Just a theory from the research I've read. So odd the response from your doctor. He thinks the LDN doc is excellent, but won't listen to her!? Sometimes I wonder if there's more going on in the GI community of docs that we don't know. Like why do they turn a blind eye to these new therapies in the face of overwhelming research? Kind of makes me think BigPharma has their hooks in deeper than I thought. Maybe they're afraid of liability since these are not approved treatment pathways for Crohn's?

Hope the new GI is better and AMAT works for you!
Also, you can get a test through John Aitken's lab to see if you have the mycobacteria this is supposed to treat...
Irishgal, did you get tested both before and after your Anti-MAP therapy, and if so, what were the results, if you don't mind my asking?
Xeridea - yes, I got a test a week prior to starting AMAT (on no meds at all) and the results were high mycobacterial load with persistor form and lots of biofilm. He said they were too numerous to count. I then sent a sample 12 months after starting on AMAT, and the results were nearly no mycobacterial forms. Just a couple, persistors, which clearly corresponds to my amazing recovery. I was on no other meds during the time except that I added in LDN at 6 months when levo failed. I purposefully wanted to do it this way to make sure the treatment was working and it was decreasing the mycobacterial load. I also had colonoscopies just prior and at 12 months, which show moderate to severe disease just prior to AMAT, and then no disease and no polyps with full healing and scar tissue at 12 months. My GI said he was impressed, and I don't think he's easily impressed! But he still won't prescribe AMAT. 🤔