Tapering off medication after FMT - how to?

Hi all -

I'm 35 YO, diagnosed with UC (Proctitis for accuracy, 15 cm from the anus) 20 month ago. I've been initially treated with 5ASA that partially helped then been asked to combine steroids enemas for a limited time which did put me on remission but for a few month long though. The GI asked me to keep a head with 5ASA as my inflammation was mild (he is not steroid favorite). At some point I was desperate seeing blood and mucous on stool and I decided taking an FMT course of 12 days (had to stop as my donor had to go on antibiotics). It put me on remission pretty fast, no mucous no blood but solid poop 1-2 times a day. Endoscopy test last week clinically showed no signs of Proctitis - I was happy.

Question:
Given the above and the endoscopy results I thought of tapering off 5ASA medications. My current 5ASA dosage per day: 1gr enama every night, 2gr pills, 1gr suppository at morning.
My GI (which is very experienced doc) explicitly said that tapering off enemas (which bother me most) below 5 days a week will produce the next flare up for sure. He think that I should run with 5ASA forever...

There are lots of experience fellows here that did FMT and dropped their medications - I wonder if they could assist on this one.

Really appreciate this forum and its members.
Thanks a lot.

PS. I was taking 5ASA before-during-and-after FMT course and did OldMike FMT protocol.

Post Edited (NoOneSpecial) : 2/7/2015 1:25:11 AM (GMT-7)

You would be a fool to completely taper off meds. I would be a millionaire right now if I had a dollar for every patient who got cocky and quit meds because they thought they were doing well. People always believe that when they get better they can just quit their meds and if they flare again all they have to do is what they did before. Wrong. Future flares often don't respond as well or even at all to what worked before and then you will be looking at taking immunosuppressants and biologics and possibly surgery consults. Is that a risk you really want to take? You don't have to continue taking meds as now but tapering completely off would be a huge mistake. I know you're probably not keen on wanting to hear this from your GI or us but I sincerely hope you listen because I really don't want to add yet another dollar to my collection.

Unfortunately, this "hard evidence" is from a handful of people. If you look at the overall odds, FMT for IBD is usually always unsuccessful in the long run and most of the time in the short run too. You can always find a select few that respond to something, including the spinach and sunflower seed diet, just to name one example. You can find hundreds of different alternative treatment options, all of which only have a handful of success stories compared to the overall IBD rate. Some of those success stories can even be chalked up to the placebo effect. You would be taking a huge gamble by quitting meds, similar to buying a ticket for the lottery. Of course someone is going to win but the vast majority are going to be losers. In my opinion, the risk of being a loser is not worth the gamble, although I do buy lottery tickets. But, I don't bet when it comes to my health.

Going by the definition, "ulcerative colitis" is an umbrella diagnosis to describe an autoimmune process the medical profession has little understanding of, though recent studies would hint that there is a strong microbial imbalance behind the cause.

The spinach and sunflower seed diet could might have addressed a nutritional component of some indeterminate forms of colitis, as it is rich in vitamin E and vitamin E has shown to ease colitis symptoms... sometimes permanently.

Everyone has a different pathology, but it is almost certain that there is some bacterial imbalance (or missing bacteria) that are perpetuating the symptoms. Probiotics make a minor dent, but it is not close to enough. Addressing both the nutritional and bacterial front (through FMT) would hit two birds with one stone.

Good to hear FT's success over UC.
I have a strong feeling that FT works well for proctitis.

Regarding tapering down meds- You will get mixed poll here.

If you choose to taper - Do it very slowly.
First taper off enema and oral meds streching through months.
Keep up with suppositories while doing this tapering.- Because its Proctitis.

If no symptoms through out ,then slowly taper the suppositories.

Good wishes...

Guardian7 said...
FMT helps an overwhelming majority of people. The results are almost always positive (see Sharron19's thread), but protocol has to be followed to facilitate healing and the donor must be properly chosen. The studies end up saying it's promising, despite terrible and faulty construction. I already talked about these faults in another thread.

Sounds to me like people just want to regurgitate what the medical dogma has been saying about UC for the past 20 years, despite all these cases of people eliminating UC pathology and no longer taking medications or following any dietary protocols. This is probably why there is little progress in the mainstream medical realm and doctors are quick to throw out anything that doesn't agree with them.

I disagree that FMT has helped a majority of people with uc. Unless you are referring to treating CDIFF. A lot of articles have come up with mixed or bad results of fmt and uc.

"Changes in the composition of the intestinal microbiota were significant and resulted in a partial improvement of UC-associated dysbiosis. The results suggest that dysbiosis in UC is at least in part a secondary phenomenon induced by inflammation and diarrhea rather than being causative for inflammation in this disease."
mobile.journals.lww.com/ibdjournal/_layouts/oaks.journals.mobile/articleviewer.aspx?year=2013&issue=09000&article=00015

I cited but one of many examples, I am far from convinced.

Actually, the one you just posted had only 6 patients and it said all of them improved symptomatically, but did not mention who the donors were or how many FMTs they received, which is, again, a major problem in study construction.

The one I mentioned is more recent, used 61 patients, questionable donors, weekly FMTs and 1/3 of them achieved remission after extended treatment:

A number of patients who subjectively reported improvement but did not achieve remission continued on treatment, and approximately one-third achieved remission with extended treatment. This suggests that the study treatment period could have been too short, said Dr. Moayyedi.

If they say it's promising despite the poor length, it's promising to me. The problem lies in funding and time length, which can't be done without significant financial backing. It's unreasonable to expect a FMT study to succeed if the protocols Borody and Hurst did to cure people are not followed adequately.

Again, I don't need to convince anyone but one third of patients hitting remission after extended treatment is very convincing to me and means that more should be vested into it. It should be given the same length and standards that pharmaceutical treatments are given. No one is going to hit remission by taking 6MP once a week for 6 weeks.

I would say the meslamines have a lot more conclusive studies of their effectiveness, a much greater history of success. 33 percent is pretty losy response rate for fmt, around where placebo is in most clinical studies. I'll take a more established treatment of meslamines over fmt any day.

We'll see where fmt goes after more research it seems contradictory now (sone good some bad studies; not conclusive. My opinion is that fmt is treating a symptom, much like the meslamines do. Saying fmt goes toward a cure is off base you said "FMT suggest that UC is curable if the microbial pathology is corrected". My first quote said fmt treats a symptom, much like uc meds do pretty much why I chose that study. I don't disagree that fmt works for some, temporarily.

No hard feeling, let's just agree to disagree

Compliance with maintenance medications is a big issue for uc. It's a big reason we say take your medications.

In the end, of course, do what you feel is right. Lots of us have opinions, and none of us are doctors, so good luck,

I am not saying FMT is the definitive cure, but rather something that holds strong promise if it is done properly and carefully. The biggest road block is finding a suitable donor.

But to say UC is incurable and lifelong is also incorrect, since there are many cases of people fixing their pathology (in many cases severe) with FMT. It takes one quantification to disprove this broad claim.

By far, the best example is Michael Hurst since his case necessitated surgery. The protocol he created addressed the aspects that studies cannot reach, as protein and other nutritional variables are important in colon repair. There are so many variables, but I think his method is rather comprehensive. The Brigg's protocol (by Dr.Michael Briggs) is another one that I endorse.

And no, they can't do a FMT study the same way they can for pharmaceuticals unless some rich person is willing to do it as an act of philanthropy. There is no return investment in it. It can't be comprehensive due to time and money constraints. That's just reality. It's not blaming big pharma or anything.

I just wonder how he (the doc) can be so sure the flare pops again

That's the problem. Just because he's a doctor, he thinks he is capable of playing god and predicting the future. That is the level of arrogance I've come to expect from most doctors.

garylouisville said...

I must also point out that so far not one single person has posted in this thread who has done FMT and successfully tapered off meds.

I imagine many of those might stop posting once 'cured'.