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Crohn's Disease Forum » Your Story » Anti-MAP Therapy gave me my life back


 
11-10-2015, 08:04 PM   #61
irishgal
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Dr. Chamberlin has a Q&A going about AMAT here: http://thecrohnsinfection.org/anti-map-qa/

More will be posted as he gets to them. If you have questions about AntiMAP therapy that you want answered, feel free to post here/PM me and I'll do my best to get them answered by the docs.
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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.
11-11-2015, 12:12 AM   #62
FrozenGirl
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While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
11-11-2015, 05:01 AM   #63
rollinstone
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While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.
The results for their current multinational trials are going to answer a lot of questions...
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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
11-11-2015, 08:51 PM   #64
irishgal
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While I think AMAT holds possibilities for some (not all but enough to be worth studying) I find some of their claims concerning. For example they claim low dose AMAT was more effect than Remicade at the highest dose. They say AMAT has a 41% remission rate at 52 weeks but Remicade has a 26% remission rate at the highest dose (they don't specify but source the ACCENT 1 trial. As per pub meds info on the ACCENT 1 trial:

FINDINGS:

335 (58%) patients responded to a single infusion of infliximab within 2 weeks. At week 30, 23 of 110 (21%) group I patients were in remission, compared with 44 of 113 (39%) group II (p=0.003) and 50 of 112 (45%) group III (p=0.0002) patients. Thus, patients in groups II and III combined were more likely to sustain clinical remission than patients in group I (odds ratio 2.7, 95% CI 1.6-4.6). Throughout the 54-week trial, the median time to loss of response was 38 weeks (IQR 15 to >54) and more than 54 weeks (21 to >54) for groups II and III, respectively, compared with 19 weeks (10-45) for group I (p=0.002 and p=0.0002, respectively). Infliximab safety was consistent with that seen in other trials of infliximab in Crohn's disease and rheumatoid arthritis. In particular, the incidence of serious infections was similar across treatment groups.

They also compare remission rates are differing periods of time (Anti-map:52 weeks vs humira: 56 weeks and Remicade 30weeks. )

Again not trying to dissuade anyone but I would be cautious about making your choices based on their remission numbers.

Hi Frozen Girl - I'm glad you pointed this out, since this was one of my questions too. These studies are so complex and the results nearly impossible to sift through, that I did some digging to address this. I think the key to understanding this is looking at all three studies in an intent-to-treat analysis, which is different than how the data was reported in all three, despite Accent I and Charm saying they used an ITT analysis. The point behind an ITT analysis from what I understand, is to mimic real conditions in a doctor's practice. It avoids overly optomistic results. All the initial paticipants are left in the final analysis, rather than deleting those who don't respond, don't take the meds as directed, drop out due to side effects, etc.

So here comes the math (sorry!) In Accent I, they started with 573 people, and gave them each an initial dose of Remicade. However (and here's the kicker) they only randomized the ones (335 people) who responded after two weeks!! It seems intuitive that if you only look at the people who initially respond, your end data will look pretty decent. If you divide the entire 573 by 3, you get 191 people total in each of the three randomized groups. In the highest dose group, 50 people responded, so 26% (50/191) using an ITT analysis.

The Humira Charm trial did the same thing, but in a more complicated way. They had 854 people to start and narrowed down to 778 due to some drop outs, people not following protocol, severe effects, etc. They randomized that group and ended up with 257 in the highest doseage arm, but then they divided them again in each arm to responders and non-responders. Their remission rate of 47% (a whopping 65 people) in the highest doseage arm only looks at 157 of the randomized responders! Again, it seems intuitive if you only look at the responders, your data will be pretty good. Reanalyzing this using either the 257 or the 854/778 divided into thirds gives you about 24% remission rate at 56 weeks. Not super great. Only 1 out of 4 people will get to remission with Humira. I also found it interesting that they mentioned that the most common reason for dropping out was due to adverse effects. Again, I just think people should consider all the data when making a big decision about their treatment. Here's the full Charm study:

https://health.ucsd.edu/specialties/...%20disease.pdf

As to the 30 weeks vs. 52 weeks, Accent I only gave 30 week data, even though they ran it for 54 weeks. I wish they had given the 54 week data, since most people are on Remicade for a year or more.

In the end, Remicade/Humira are FDA approved and AMAT isn't yet, so I respect people's decision to choose the therapy that they're comfortable with, just get all the info before deciding. Personally, I've been on all three and AMAT was the only one that worked. I have other friends who have done beautifully on Humira/Remicade as well.

Last edited by irishgal; 11-11-2015 at 09:58 PM.
11-13-2015, 11:36 PM   #65
FrozenGirl
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Hi Frozen Girl - I'm glad you pointed this out, since this was one of my questions too. These studies are so complex and the results nearly impossible to sift through, that I did some digging to address this. I think the key to understanding this is looking at all three studies in an intent-to-treat analysis, which is different than how the data was reported in all three, despite Accent I and Charm saying they used an ITT analysis. The point behind an ITT analysis from what I understand, is to mimic real conditions in a doctor's practice. It avoids overly optomistic results. All the initial paticipants are left in the final analysis, rather than deleting those who don't respond, don't take the meds as directed, drop out due to side effects, etc.

So here comes the math (sorry!) In Accent I, they started with 573 people, and gave them each an initial dose of Remicade. However (and here's the kicker) they only randomized the ones (335 people) who responded after two weeks!! It seems intuitive that if you only look at the people who initially respond, your end data will look pretty decent. If you divide the entire 573 by 3, you get 191 people total in each of the three randomized groups. In the highest dose group, 50 people responded, so 26% (50/191) using an ITT analysis.

The Humira Charm trial did the same thing, but in a more complicated way. They had 854 people to start and narrowed down to 778 due to some drop outs, people not following protocol, severe effects, etc. They randomized that group and ended up with 257 in the highest doseage arm, but then they divided them again in each arm to responders and non-responders. Their remission rate of 47% (a whopping 65 people) in the highest doseage arm only looks at 157 of the randomized responders! Again, it seems intuitive if you only look at the responders, your data will be pretty good. Reanalyzing this using either the 257 or the 854/778 divided into thirds gives you about 24% remission rate at 56 weeks. Not super great. Only 1 out of 4 people will get to remission with Humira. I also found it interesting that they mentioned that the most common reason for dropping out was due to adverse effects. Again, I just think people should consider all the data when making a big decision about their treatment. Here's the full Charm study:

https://health.ucsd.edu/specialties/...%20disease.pdf

As to the 30 weeks vs. 52 weeks, Accent I only gave 30 week data, even though they ran it for 54 weeks. I wish they had given the 54 week data, since most people are on Remicade for a year or more.

In the end, Remicade/Humira are FDA approved and AMAT isn't yet, so I respect people's decision to choose the therapy that they're comfortable with, just get all the info before deciding. Personally, I've been on all three and AMAT was the only one that worked. I have other friends who have done beautifully on Humira/Remicade as well.
That makes sense to me. Still not 100% behind it given the data but I do better understand some of the confusion. Thanks for explains.
11-14-2015, 08:40 AM   #66
irishgal
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Hi Frozen Girl - no problem! Someone had to lead me through it as well. I read this book in college called How to Lie with Statistics, and it was all about how you could make things how you want them to look with the right presentation. What I gleaned was to be very wary of statistics! I prefer looking at raw numbers and when I read Selby, I was mad since it seemed like, at least for a few years, AMAT worked really well, but he said it didn't. Patrick McLean's talk in Chicago mentioned these statistics, so I wanted to know why the percentages seemed so different, and this is what I found.

I'm not sure which analysis is most accepted in the field, but I thought others may be interested to see what I found as well. In the end, everyone has to choose the treatment they feel comfortable with, but they can at least have a fair representation of AMAT as well as the data from other studies. It's all pieces of a puzzle,and I hope the smart researchers of the world put it together quickly, for all of our sakes!
11-14-2015, 03:03 PM   #67
FrozenGirl
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Hi Frozen Girl - no problem! Someone had to lead me through it as well. I read this book in college called How to Lie with Statistics, and it was all about how you could make things how you want them to look with the right presentation. What I gleaned was to be very wary of statistics! I prefer looking at raw numbers and when I read Selby, I was mad since it seemed like, at least for a few years, AMAT worked really well, but he said it didn't. Patrick McLean's talk in Chicago mentioned these statistics, so I wanted to know why the percentages seemed so different, and this is what I found.

I'm not sure which analysis is most accepted in the field, but I thought others may be interested to see what I found as well. In the end, everyone has to choose the treatment they feel comfortable with, but they can at least have a fair representation of AMAT as well as the data from other studies. It's all pieces of a puzzle,and I hope the smart researchers of the world put it together quickly, for all of our sakes!
I agree totally. I took a basic stats class but with clinical research it is so hard to read when you throw in randomization, intent to treat and all that. Glad someone here can comprehend it. (Though they certainly do make kt very hard to see what the results really are)
12-27-2017, 01:13 PM   #68
ibdcrohnie
 
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Philin,

Are you still on remission? How does the treatment work on long run?
12-30-2017, 06:05 AM   #69
Philn
 
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Hi, I never reached remission on anti-MAP, fell just short and I just live with fairly mild Crohn's. I manage it and it doesn't really affect my life...but you saw how sick I was. My symptoms haven't changed in years. Treatment seems to be fine long term. I've been on it now since the end of 2011...hoping the vaccine will work
12-30-2017, 09:31 AM   #70
ronroush7
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Hi, I never reached remission on anti-MAP, fell just short and I just live with fairly mild Crohn's. I manage it and it doesn't really affect my life...but you saw how sick I was. My symptoms haven't changed in years. Treatment seems to be fine long term. I've been on it now since the end of 2011...hoping the vaccine will work
I hope the vaccine works.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-30-2017, 09:31 AM   #71
ibdcrohnie
 
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Thanks for your response, I am in remission with SCD diet and Lialda, but my Dr is suggesting humira as the extent of my disease is high, I am thinking to try anti map before humira as anti map works better before using anti ting

What do you suggest?
12-31-2017, 05:09 AM   #72
Philn
 
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Hi, not being a doctor and cost aside, I would say try everything. Everyone's different and I think it's hard to accurately predict what will work and what won't. If your Crohn's is only mild I would suggest trying anti-MAP only after all the standard treatments just because it's harder to get hold of, find a doctor etc and I think its effectiveness is more significant in those who are really sick. Mild I suspect is easier to treat. If you've had responses to immune suppression in the past, I'd stay with that line of treatment. If not, anti-MAP has a fantastic success/response rate and a really good side effect profile.
12-31-2017, 12:05 PM   #73
Crohn2357
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Philn, may I ask, which antibiotics and what dosage are you using right now? Are you using any additional medications for Crohn's?

By the way, we have a support group for anti-map therapy now, if anyone is interested: http://www.crohnsforum.com/showthread.php?t=82362
01-01-2018, 04:09 AM   #74
Philn
 
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Hi,

Per day:
-Rifabutin 600mg (split into 2 doses of 300mg morning/night)
-Clarithromycin 1000mg (split into 2 doses of 500mg morning/night)
-Clofazimine 150mg

That's all.

I'm pretty sure I could reach remission if I went back on steroids but the symptoms return once I stop and the side effects aren't worth it. I'm happy.

This is the full dose but when you start they have you ramp up to lessen the likelihood of side effects. I started on about half these doses, then after 6 weeks increased to 3/4 dose then after another 6 weeks went to the full dose. They do blood tests as well before increasing the dose just to check all is normal.
01-01-2018, 01:30 PM   #75
Crohn2357
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Hi Philn, thank you for sharing it. I am going to start the anti-map therapy in the near future and I have been somewhat puzzled by the different dose suggestions for rifabutin. Some say it is 300mg, some say it's 450mg, and some say it's 600mg. I asked about this in the support group and irishgal tried to clarify the confusion. I have the CDC's guideline for the anti-map protocol and it too suggests 600mg. Do you know anything about this issue?

These are the posts in the support group that I am referring to:
http://www.crohnsforum.com/showpost....0&postcount=83
http://www.crohnsforum.com/showpost....5&postcount=84

This is the CDC's guideline:

Last edited by Crohn2357; 01-02-2018 at 04:25 AM.
01-02-2018, 12:31 AM   #76
Crohn2357
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Regarding side effects, do you get headaches from the antibiotics?

I know that clarithromycin causes metallic taste in mouth, does it go away or become less at some point?

Which side effects did you experience at the beginning? How did you deal with them?
01-02-2018, 07:06 AM   #77
Philn
 
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Hi,
All I can tell you is I had the exact same dosages as you outlined in the CDD's guidelines and that was in 2011. They've never told me to change my dose in follow-ups since.

Regarding side effects:
-a tan if I spend too much time in the sun. It's summer here in Sydney now and I don't have a tan.
-a very slight metallic taste which went away but I sometimes notice it if I have a really dry mouth. It's possible I wouldn't have thought anything of it if I wasn't told about it.
-slight pink tint to bodily fluids
No headaches.
All these were really mild and nothing side effects as far as I'm concerned. The antibiotics are used for long term treatment in TB/Leprosy and have been around for 20years+.
I had mild arthralgia for the first 6 months and haven't had any since. It didn't really bother me although I was somewhat aware of it. It's very common and you probably can expect some, at least when you start. For some people it can apparently be bad and they will stop the treatment. They switched one girl I spoke to to rifampicin and it went away.

The side effect profile of this treatment is really good and I think people's stories maybe get blown out of proportion. I've been fine on a full dose of the meds for a long time and I don't even notice I'm on them.
01-02-2018, 03:10 PM   #78
Crohn2357
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Hi Phil, that's encouraging. Thanks for the detailed answers.

I hope your success continues, good luck.

Last edited by Crohn2357; 01-03-2018 at 01:33 AM.
01-02-2018, 03:26 PM   #79
ibdcrohnie
 
Join Date: Dec 2017
Location: Texas
I have never been on humira or immuno modulator or any anti tnf medication; according to my dr. my case is severe even though I am in remission for last 1 year, is it a wise decision to jump directly to anti map with out trying the above medications.
01-18-2018, 06:38 PM   #80
Nyk24
 
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Hi Philn

Great video and I appreciate the time you must have spent putting it together. It has helped me summarise and confirm my own research that I have been doing.

Next week is a big week for me as I am going to see my gastro consultant to tell him that I am starting AMAT I know this sounds a bit cocky, arrogant and bullish but I am going to do it in a charming and knowledgeable way. This is in essence a sales pitch and I am hoping to get some back up from Dr Sanderson at guys and st Thomas in London. Whether that be an email I can forward on to my consultant or get Sanderson and my consultant in touch with each other.

If my consultant doesn't want to give me AMAT then I will get myself referred to Sanderson myself.

I would prefer to have my treatment all done at the same hospital - the royal London hospital where they currently look after my kidney transplant as well.

My gastro doctors tell me they are under treating me due to all the drugs I take for my transplant. Some of them are used in Crohn's which makes changing drugs or doses a bit iffy at times when it comes to managing my kidney treatment. Therefore they want to put me on an anti tnf treatment to which I have told them no because I don't want to stop taking my anti rejection drug cyclosporine after 20 years just to try something with a 40% success rate that when working can stop after a while plus there's the side affects too! I'd much rather take my chances with AMAT treatment.

BTW has anyone else got Crohn's and a kidney transplant or similar?

The guy from Birmingham sorry I can't remember your name how did you get on?

If anyone is worried about the traveling aspect of getting treatment don't be it might be worth it. I travel at least every 3 months from Essex to the royal London hospital and although NHS funding is stretched I would say it is one of the best if not the best hospitals in the world for kidney problems although I can't say I have the same confidence in the gastro team.

Any advice guys on how I should lay out my pitch? I only will have a few minutes to get my point across as my consultant must be very busy as he is always trying to hurry up my consultations.

I will of course keep you all posted on how I get on
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