Dificid Taper or Pulse Schedules

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Megs717
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Dificid Taper or Pulse Schedules

Postby Megs717 » Sat Apr 21, 2018 7:39 pm

Can anyone that's had success from Dificid Taper or Pulse please post the dosing schedule here? I have seen a couple posts on the topic, but would love to see some successful dosing schedules! I am in the throws of another relapse, and my GI prescribed Dificid - but she's yet to do anything beyond 10 days so I said I'd like to ask in group to see what's worked for some?

beth22
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Re: Dificid Taper or Pulse Schedules

Postby beth22 » Sun Apr 22, 2018 1:25 am

One of our moderators, Nancy, did a Dificid taper. Why don't you send her a pm and ask her what her doses were.

amg
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Re: Dificid Taper or Pulse Schedules

Postby amg » Sun Apr 22, 2018 1:55 pm

Hi there. See my PM. I will also post some info here to help others:

My daughter was 14 and had 4 relapses - 2 on vanco and 2 on flagyl (Flagyl is NO LONGER RECOMMENDED FOR C DIFF I WANT TO EMPHASIZE THIS TO ALL)
We were headed for FMT at Children's Hospital Los Angeles when I found out about Dificid here (thank you to this site).

The GI who does FMTs was willing to try a Dificid taper for my daughter. She prescribed Dificid 1 tablet twice a day for 14 days, then 1 tablet once a day for another 14 days.

At the end of that, we convinced our ID doc to add a course of 1 tab Dificid every other day to extend the taper a bit. I can't remember how long that was for, but I think 2 more weeks.

The taper described in this paper: https://academic.oup.com/ofid/article/1 ... 69/1467363 is what gave us info to substantiate our request. The paper's taper is:

After a standard course of Vanco or Dificid, add a Dificid taper which is Dificid once daily for 7 days, then Dificid once every other day for another 13 doses.

Good luck!!

NanciT
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Re: Dificid Taper or Pulse Schedules

Postby NanciT » Sun Apr 22, 2018 5:36 pm

Thanks for Posting AMG. I hope your daughter is doing well!!

My Dificid taper was off a research paper I found online in 2014 when the CDC caused issues so many GI's would not do FMT's in my area.
I was desperate and finally got my GI to write the RX but it was a 3 month taper, I have looked for the paper but cannot find it. I would not recommend it to anyone, nearly 3 years later I have post IBS. No CDIFF thankfully....but its been a very long recovery.
I know there are several who went on a 30 day taper and did great, hopefully a few more will jump in.

NanciT

amg
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Re: Dificid Taper or Pulse Schedules

Postby amg » Sun Apr 22, 2018 6:18 pm

Hi NanciT!

Thank you, yes she's doing very well.

The Dificid taper cured her of c diff. It's been a year and a half. She has grown a little and gained weight since then (good healthy weight! She was so skinny with c diff) and last fall she made her varsity volleyball team as a sophomore in a very competitive high school. She's currently playing club volleyball and feeling strong.
She still has some IBS issues, and for a while her anxiety was significant, but she has seen a therapist who understands the post-traumatic aspect of this illness and zeroed right in on it, and my daughter is feeling so much better. The IBS is worse around her period, and she still avoids a lot of foods that triggered stomach aches after c diff, but I'm encouraging her to gradually add them back as tolerated. Stress and feeling confined (like on a road trip or being in the classroom) can cause stomach aches. We have been blessed that she has not had to take antibiotics of any sort after this, and of course that remains something we do think about. But c diff also gave her a true appreciation for her health, and for the little things she used to take for granted. This site was a godsend to us during the ordeal.

NanciT
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Re: Dificid Taper or Pulse Schedules

Postby NanciT » Sun Apr 22, 2018 7:09 pm

Thanks so much for the follow up, I love hearing she is back to doing things she loves! I think the rest of it is time, that is what I have found.

Great to hear from you!

NanciT

Bobbie
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Re: Dificid Taper or Pulse Schedules

Postby Bobbie » Sun May 06, 2018 5:06 pm

Amg and NanciT,

Thx for the info re Dificid taper. We used to suggest tapering Vanco but Dificid seems to be more effective.

Nancy, how is the baby? Are u going on your trip?

AlexR
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Re: Dificid Taper or Pulse Schedules

Postby AlexR » Sun Sep 09, 2018 2:11 am

Hello NanciT,
Could you please share with your 3 months difficid taper?

NanciT
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Re: Dificid Taper or Pulse Schedules

Postby NanciT » Sun Sep 09, 2018 10:12 am

AlexR

I have looked for that research paper and have not found it, but it was research. The only reason my GI allowed me to do that taper is because I was very ill, had been through 5 relapses over a year and the FDA put a halt on FMT's at the time (2014) and no one was doing them.
I was in a terrible situation. It was a long 3 month taper, since then several of our posters have been on a 30 day taper and done great.
In the previous post AMG reviews her daughter's taper which worked!

I would never recommend my long Dificid taper, it's been 3 years and I was left with IBS and other issues. Look under CDI for additional information on Tapers.

NanciT

AlexR
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Re: Dificid Taper or Pulse Schedules

Postby AlexR » Mon Sep 10, 2018 12:51 pm

I relapsed when I was in the middle of 30 days dificid tapper, that was absolutely unexpectable and disappointing. So, now I'm again on a full dose (200mg x2), but dont't know what to do further. Probably, I should follow another tapering scheme, that is 14 days of full dose, followed by 200 mg a day for another 14 days.


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