Dificid vs. FMT

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cnatra
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Dificid vs. FMT

Postby cnatra » Thu Jun 01, 2017 3:13 am

Well I had an appointment with a new GI doc today.

He was very thorough and we went over everything I've been through the last 17months.

He thinks we could try an FMT via OpenBiome or do a Dificid taper. We debated the pros/cons of both.

I'm leaning towards giving the Dificid a try. It seems like many on this site have finally found success with Dificid.
I'm just wondering if there will be enough good bacteria left in my gut to turn things around after all the Vanco & Flagyl I've had trying to beat this though.
:(

I know no medical advice is given here but wonder what peoples experiences have been with Dificid after a Vanco taper has failed.

Thanks !!

georgina
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Re: Dificid vs. FMT

Postby georgina » Thu Jun 01, 2017 4:02 am

Why not trying a Dificid taper followed by a FMT , 48 h after taper is finnished? With this combo the chances of cure will be the highest.

amg
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Re: Dificid vs. FMT

Postby amg » Thu Jun 01, 2017 12:00 pm

Honestly, if someone hasn't tried the Dificid taper, I can't see the plus of putting oneself through an FMT (and let's face it there are risks from a colonoscopy, the unpleasantness of a prep, and possible issues from the FMT itself that we can't predict) without trying a Dificid taper first

The logic is that a Dificid taper will target c diff, allow your gut time to restore its good flora, and work on the spores too.

My daughter had relapsed twice with flagyl and twice with Vanco and had started a Vanco taper which didn't seem to be helping her symptoms much. She had also had an appendectomy which started the whole c diff thing and which puts people at higher risk for recurrent c diff (the thinking is that the appendix may play a role in restoring good gut flora). At that point, I asked our ID doc for the Dificid taper and we saw a GI who performs FMT. I clearly remember the GI doc who wanted to do the FMT saying "Oh, she will definitely relapse again." Oh???? Really???

Anyway, my thinking was we can always do the FMT if the Dificid taper doesn't work, but let's at least give the taper a try. And indeed, we set up everything for the FMT - pre-authorization and such - so that if we needed it we could get it relatively quickly.

So we did Dificid 14 days twice a day, 14 days once a day, and 7 more doses every other day.

I convinced our ID doc by showing him Dr. Stuart Johnson's paper we've linked here before. https://academic.oup.com/ofid/article/d ... r-Patients

And I showed him the following paper as well to bolster the theory that a Dificid taper works against the spores and allows the gut to repopulate the good flora:
https://www.researchgate.net/publicatio ... _gut_model

Granted, I'm a physician myself so our docs were patient in listening to me argue my points. But if you come armed with literature and logic, and are politely persistent, I hope docs who aren't as familiar with novel options will open their minds to learning something new. It sounds like your docs are already open to the option which is great. We were thankful our ID doc was willing to try Dificid in a pediatric patient (my daughter was 14 at the time)

That was last November. My daughter has been c diff free since then and has not needed an FMT.

beth22
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Re: Dificid vs. FMT

Postby beth22 » Thu Jun 01, 2017 12:20 pm

I agree with amg. Had Dificid been available when I failed my vanco taper, I would have tried that first, but my first FMT was in 2008 and it was not yet out on the market. If you do the taper, that should give your GI system time to replenish some good bacteria. Ask the doctor about taking probiotics while on Dificid. I think most of the people who took it, did take probiotics as well.

cnatra
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Re: Dificid vs. FMT

Postby cnatra » Thu Jun 01, 2017 5:16 pm

Georgina, I actually thought that going in to the appointment. 10 days of Dificid then an FMT.
We discussed it but surprisingly the GI doc wanted to try Dificid taper first.

cnatra
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Re: Dificid vs. FMT

Postby cnatra » Thu Jun 01, 2017 5:41 pm

Thanks for all the feedback !

After seeing 5 GI docs since January I met with my first ID doc today. It was interesting . He seemed to have a little different take on GI guidelines for C Diff.
Flagyl in particular he thinks shouldn't be used at all anymore because it does too much harm to the gut microbiota. (although none of my GI docs are enthusiastic endorsers of Flagyl either)

He also said easily 15% of the population is walking around with C Diff in their gut. It's the broad spectrum ABX that set off the bad chain of events.

Anyway the ID doc is endorsing 4 weeks of full strength Dificid treatment and he wants to do the Zinplava infusion after week 2 .
Then he would recommend an FMT if this fails.
He thinks there isn't enough broad data on FMTs success rate yet. Having said that he knows Dr. Herbert DuPont who is a lead researcher here in Houston on FMTs and that's where he would refer me if the Dificid doesn't work.

So after a miserable Jan./Feb. followed by some hope in March/April with the Vanco taper then frustration through May with recurrent C Diff symptoms I'm trying to get my head around where I'm at now.

I feel desperate at times to rid myself of this scourge and know Dificid or an FMT are the only real options left yet I'm still very nervous about going forward with this next step!!!

I guess it's the fear ; anxiety of what if this fails ?!?
I had high hopes for the Vanco taper :(

What if there's not enough good bacteria left in my colon to recover even with the month of Dificid ?
How concerned should I be with taking the Zinplava infusion ??
The Vanco hasn't bothered me much, will the Dificid ?

I hate this damn C Diff bacteria !!!!

Lisa33
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Re: Dificid vs. FMT

Postby Lisa33 » Thu Jun 01, 2017 9:25 pm

I don't know anything about the infusion, but there are many posters on this site who were cured with Dificid tapers after vanco tapers failed. Dificid only targets the c-diff bacteria and not good gut bacteria which is also a huge plus. If I were in your shoes, I would feel comfortable and confident with trying the Dificid taper before resorting to the FMT. Everybody reacts differently to Dificid. However, there are posters that even though they didn't feel well on Dificid, were cured. Be hopeful. This can be your cure.

Feel better,
Lisa

NanciT
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Re: Dificid vs. FMT

Postby NanciT » Thu Jun 01, 2017 9:54 pm

I agree. Speak with your GI about a Dificid taper. I think the chances are much better with a taper. If you look under CDI, I believe we have posted what some have used as far as the 30 day taper.
Wishing you the BEST with this!!

NanciT

georgina
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Re: Dificid vs. FMT

Postby georgina » Fri Jun 02, 2017 12:25 am

Your ID doctor has a good plan for you , Dificid followed by Zinplava infusion should be a successful treatment (I would love to have a doctor like that here in Romania).Dificid might be well tolerated or it may give you some side effects but it will definitely take care of Cdiff . Dificid will also allow your good flora to recolonize as it targets ONLY clostridia ,it won't kill spores but it will stop the sporing process (it won't allow Cdiff to hide into spore form when the bacteria feel the antibiotic threat).And Zinplava is a monoclonal antibody that will disable toxin B , it has been really successful in trials . Didn't know that Zinplava is already available on the drug market. Can't wait to try it myself when it will be available in Europe , been saving money for it since 2015! I personally think that you have a great treatment plan and you should try to be a little more optimistic , don't think about failure , think positive , there has to be something that will work for you. If "GOD FORBID" that regime fails , you will always have the FMT.

cnatra
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Re: Dificid vs. FMT

Postby cnatra » Fri Jun 02, 2017 2:28 pm

Thanks all for the feedback !!

I feeling more positive today. :)

Although I'm having to wrestle with insurance companies and prescription costs on these two drugs because they're still damn expensive !!

Fortunately though I think I'm going to get a huge discount by going mail order with the Dificid just like I did with the Vancomycin.

I fear I may be out of luck with the Zinplava though because my insurance won't cover it at all and I probably earn too much for help from Merck.

$3700 for one 250mg dose !!!!!

So it may not be until early next week that I start the Dificid :(

Thanks again for your positive support !!!

NanciT
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Re: Dificid vs. FMT

Postby NanciT » Fri Jun 02, 2017 3:11 pm

Please let us know how you do. Zenplava is new and I don't believe we have had anyone try it yet. It was recently approved.

Wishing you the best!

NanciT

cnatra
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Re: Dificid vs. FMT

Postby cnatra » Sat Jun 10, 2017 5:08 pm

Well it took a bit of leg work sorting out the prescription coverage for Dificid with my insurance company.
The first bottle was through local retail pharmacy with a Merck coupon but second and any subsequent bottles will be via the mail order pharmacy program at a substantially lower cost.

$200 a pill , WoW !!

Anyway I'm in day 3 with the Dificid and so far so good . No major side effects yet . I'd say I'm experiencing more gas & some cramping compared to the Vanco.
I do feel like I can tell the Dificid is "attacking" the C Diff differently. No D but stools varying from mostly normal to a little loose & soft.

The Zinplava infusion is scheduled for Wednesday afternoon. It's supposed to take a little over an hour.

Fortunately the nurse told me Friday that my insurance should be covering the bulk of the cost but I'm going to confirm that Monday.

I'm drinking lots of Kefir still and trying Florastor again. I've even started eating sauerkraut and bought some of those funky Bubbies pickles.

The new GI doc said I should try and ramp up my intake of " resistant starches " .
Apparently potatoes that are boiled and then cooled or white beans are good sources for this.
These ideally will end up in the colon and are great "food" for the good bacteria we need in our colon.
Which in turn make short chain fatty acids like butyrate that help protect our colon from C Diff.

Anyway I've been reading up on that and trying to add to my diet.

Crossing my fingers this is going to work !!!

Ril
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Re: Dificid vs. FMT

Postby Ril » Sun Jun 11, 2017 10:05 am

Good luck.
This new information can be promising for a lot of people but first let's hope it proves to be the magic bullet you need!

Rita

christyn
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Re: Dificid vs. FMT

Postby christyn » Mon Jun 12, 2017 2:53 pm

cnatra...thank you for these updates. I may be facing a taper or FMT as well. Interested in the "resistant starches" as well. Did they say what type of potatoes was best, white or sweet?

Good luck to you and I will be interested in your, hopefully, successful progress.

cnatra
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Re: Dificid vs. FMT

Postby cnatra » Tue Jun 13, 2017 9:37 pm

I'll let ya'll know how I feel tomorrow after the Zinplava infusion.

Christyn I'll hit the 10th day of Dificid this Saturday.
I'll let you know what the taper looks like when I start.
I still need to confer with the ID doc & the GI doc.
They both have different ideas on the taper.

Google resistan starches . There's quite a bit of information out there . I think just plain old Idaho or Yukon Gold potatoes will work. The key apparently is that after the potatoes are boiled these get cooled and then reheated. Apparently every time the potatoes are cooled and reheated it changes the chemical composition of the starches.
These then don't get fully digested and end up passing through the colon and act as a food source for the good bacteria in your colon.

Also apparently almost any type of white bean is good . I've found some ground green banana powder on Amazon that is supposed to be high in resistant starches as well as Bob's Red Mill potatoe flour.
In fact I saw on Bob's Red Mill site other things like oats , beans and lentils like Mung beans that are supposed to be high in resistant starches.
I think cooked and cooled rice too.

I plan on meeting with my GI docs dietician next week.


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