Successes with anti-MAP / RMAT anyone?

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dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/3/2010 1:43 PM (GMT -7)   
I know this has been posted before, but I want to hear about any successes with this therapy. I am considering Methotrexate vs. Tysabri vs. Anti-map. My GI doctor doesn't seem too fond of anti-map, but I'm thinking it might work better for me since Cipro has been the only drug that I have responded to. Oh, and I am scared of Tysabri. Thoughts?
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2010 1:53 PM (GMT -7)   
I do not personally agree with the MAP theory myself, as I believe that there are too many variables for MAP to be the only cause of Crohns. But.....I have done a few rounds of Xifaxan 800 mg per day recently and found that to be quite helpful with my Crohns. In fact I have an appt with my GI on the 12th of March and will be talking to him about taking this antibiotic full time. It is a non systemic antibiotic that works only in the intestines. Maybe something to ask your doc about. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/3/2010 2:19 PM (GMT -7)   
Hi Nanners: Thanks for your reply. I actually was on Xifaxan for about 6 months last year after a taper off of 60mg of Prednisone. I found that it worked for me for a few months, then stopped completely. I am back on Cipro, which is working better than Xifaxan, but I am certainly not in remission by a long shot.

Xifaxan is definitely worth a shot. Good luck to you too.
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


willj
New Member


Date Joined Dec 2009
Total Posts : 19
   Posted 3/3/2010 3:05 PM (GMT -7)   
I have been on Clarithromycin, Rifabutin and Clofazimine for about 8 months now and am really healthy.  Everyone is entitled to their opinion about the effectiveness of Anti-MAP but there is plenty of evidence out there to suggest it is efficacious.

mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 3/3/2010 4:04 PM (GMT -7)   
I don't really understand why every time anti-map treatment is brought up on this forum, the thread is either locked, posts are deleted, or misinformation is put forth. People seem so uptight and negative about the subject. If there were one right answer to the Crohn's problem then I could understand it but different things work for different people so why aren't we open to all ideas? What is everyone afraid of??

No where have I ever read that anit-map is the answer to everyone diagnosed with Crohn's. MAP can be in milk, dirt, water & meat and some people may be sensitive to it and others tolerate it. I wish I had all the answers but no one can rule it out as a possibility for SOME people with Crohn's. Unless you don't have all the facts.

If antibiotics help YOU, it is all the more reason to believe anti-map (which is a combination of antibiotics) could help. There are so many different variations of antibiotics used with different doses and the length of times taken for Crohn's treatment that it's hard to compare successes with failures.

My daughter started anti-map treatments with Dr. Chamberlin in mid December, 2009. She had a colonoscopy at that time which showed inflammation and ulcers. Unfortunately, she had a reaction to 6MP in the past and to this treatment where her white blood count kept going extremely low. Every time this happened, she would have to go off the treatment for 1 week. Two weeks ago, she had another colonoscopy and all the inflammation is gone. The local doctor came out after the procedure and said there was no Crohn's. I was flabbergasted. He said he wondered if she ever had Crohn's. I showed him the pictures from the December colonoscopy and he said that could be irratation from bowel prep. It seemed ridiculous to me. She has Crohn's. She has had a resection with lab reports, she has been diagnosed at the Cleveland Clinic and in previous local colonoscopies. Luckily, my daughter has had the same surgeon since 2003 and he agrees that she has Crohn's but he thinks the GI doctor doesn't want to acknowledge that the anti-map treatment may have cleared things up. The GI doctor seems upset that we tried this treatment even though all the conventional treatments failed. It's the craziest thing. Who cares what did it if the inflammation is gone? I have heard similar things happened years ago with the antibiotic treatment for ulcers when doctors didn't want to believe in that either.

My daughter's surgeon has now put her back on Xifaxan again which she was taking before anti-map and having some success with but she's now on a higher dose of 1200 mg./day. There are no side effects with it for her other than night sweats for now. But all I can say is antibiotics have worked for her. You may want to try a higher dose of Xifaxan too.

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/3/2010 4:43 PM (GMT -7)   
well i care what did it...and the poster obviously cares having asked the question.. .apparently you saying that after receiving antimap antibiotics there was no inflammation, but you didnt come out and actually say that. I will assume you meant that.

As far as thoughts there are some diet suggestion which are based on blood type. The theory is that a hypersensitive person having had an allergic reaction, and therefore the choice of therapy might be based on the allergy, http://en.wikipedia.org/wiki/Hypersensitivity , AND the persons blood type.

The fact that the glycoprotein structure of the MAP is the very area that is problematic in crohns (glycoprotein recognition) makes exposure to MAP problematic. So its not neccesarily the cause per se as moreso another of the pathogens it might/would have trouble with.

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/3/2010 4:59 PM (GMT -7)   
mastersmom, wow! Your story is powerful! How wonderful that the treatment has worked for your daughter!

I also echo your concerns--all of them--that you expressed.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/3/2010 6:22 PM (GMT -7)   
I'm glad MAP helped your daughter. May I ask why she's on Xifaxin if she has no sign of CD? Is she still having symptoms?
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 3/3/2010 6:34 PM (GMT -7)   
The doctor is substituting Xifaxan for the anti-map treatment that lowers her white blood count. Just because she doesn't have inflammation now doesn't mean it won't reoccur.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/3/2010 9:17 PM (GMT -7)   
I see. So she is no longer doing anti-MAP. How long was she on it for? I thought I remember reading that most people need to be on it for a year or two.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


comedybob
Regular Member


Date Joined Jan 2010
Total Posts : 241
   Posted 3/3/2010 9:51 PM (GMT -7)   
Mastersmom, that is wonderful news about your daughter. my personal beliefhas always been that Crohn's is not a single disease. It seems like Dr Crohn just grabbed the entire digestive tract and said "anything that happens from entry to exit belongs to me" that is a big stumbling block in treatment, i think. in another post someone said that because the acid in our stomachs is different than the acid in our bowels, it couldn't be a similar situation. well, how is it that crohn's shows up in our mouths, also different than bowels? it's not one disease
bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seems to be helping(less pain gained 3 pounds in three weeks)


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 3/4/2010 6:12 AM (GMT -7)   
Rider Fan - Like I said, she started the treatment Dec. 17th but it keeps lowering her white blood count. She can not continue taking it when it does that. The surgeon is trying to find an alternative that might also work. There are no clear answers as in all Crohn's treatments. I don't want her to be without some form of treatment so we are trying this now. Some people say 2 years is a guess about taking anti-map treatments but if my daughter could still take it, I would recommend she stay on them indefinitely.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/4/2010 7:29 AM (GMT -7)   
Mastersmom the only reason a post gets locked is if it gets too political or others start flaming and attacking another poster for there opinion. This post will be allowed to stay as long as everyone respects the forum rules and eachother.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/4/2010 11:21 AM (GMT -7)   
Thanks everyone for your responses. It sounds like there have been some successes on it.

I know this topic isn't on this board much, that's why I brought it up. I actually did speak with Dr. Chamberlin in El Paso, TX last year and was going to make the trip from Boston. Long story short, I didn't b/c I got a bit better on Pred and the SCD Diet, etc. etc. Anyway, now things aren't so good.

I am looking at anti-MAP because I am one of those people who gets worse on the Crohn's meds. They have caused me nothing but harm:

Asacol - hospitalized for a week
6MP - Immediate major allergic reaction after one pill
Remicade & Humira - Literally went from 10 bms/day to about 30/day, with the Crohn's eventually affecting my rectum

Those are just a small few of my reactions. I recently switched doctors b/c my last one wanted me to go straight to a permanent colostomy with bag. My new GI is more open to other ideas, but is still pushing Tysabri and/or Methotrexate on me.

I have been interested in anti-MAP for some time ever since Cipro helped me for 3-4 years, but want to hear about people who have had success. A trip to TX is a big deal, being a mother of a small child.

Also, quite honestly, I don't care if I believe in the MAP theory, or even why it works. I don't even care if it works for a high percentage of people. If it works for a small few, that's all I need. I don't seem to fit into the majority "percentages" anyway. I really just want to stop going to the bathroom!
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 3/4/2010 12:20 PM (GMT -7)   
Diet Coke - If you talk with Dr. Chamberlin and decide to go, I would be willing to tell you our experience with hotels, etc. We traveled 1600 miles from Ohio and I usually don't venture outside my neighborhood. It was a big deal for us too. I can tell you though that Dr. Chamberlin is very caring and has been in constant contact with us since we were there. My daughter also falls into the category of 'complicated' because things don't work well for her either. That is why we were desperate enough to make the trip. I will also tell you that this treatment can make you very sick for weeks--like you have the flu and more. From others I have talked with, that seems to be when it is most successful.

The last two drugs left for my daughter were also Methotrexate and Tysabri. She said with her past experiences with drugs, she is not willing to chance Tysabri and the brain side effect. She did so well on the lowest doses of Xifaxan, we just thought it made sense for her to try another antibiotic treatment.

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/4/2010 1:02 PM (GMT -7)   
mastermom - Thanks. I might get in touch with you if I decide to go. It sounds like she is doing great. Good for her, and you!
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt

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