Question about dificid taper

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Yogini
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Joined: Thu Sep 28, 2017 2:10 pm

Question about dificid taper

Postby Yogini » Thu Oct 05, 2017 8:35 pm

I read all the posts on this topic. So grateful for all the info and references. Saw inf disease md today at kaiser 1st time. I finished 10 days of dificid for first relapse 4 days ago that was prescribed by my pcp (i had done research and he agreed to order). 1st drug was flagyl.ID md likes to treat first relapse for a long time and wanted to use a vanco taper without waiting for a second relapse. Because of all the references on the dificd taper, he was willing to let me do that.
Question is i have been off dificid 4 days, but we decided to forego another 10 day course and just start with the 7 days once a day, then every other for 26 days.
Do you think this should be ok?

roy
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Re: Question about dificid taper

Postby roy » Fri Oct 06, 2017 3:57 am

Your asking for medical advice and none of us are qualified to give that.
We can say what is normal though.
Your very early on in your battle with c.diff, still in the group where one or two rounds of meds effects a permenent cure.
Dificid was researched for years at a huge cost and the results showed a 10 day course to be effective.
When people have relapsed several times some Dr do prescribe a taper with good results.
Theres no study into dificid being used that way.
The emphasis is relapsed several times.
One problem with changing care givers is that the new one might feel they are not doing their job unless they prescribe something (Some patients think that as well).
You might want to rethink and remember that you have just taken the best available medication at the recommended dose and your symptoms have resolved.
Personally I can not see why anyone would want a patient to continue meds after being considered cured.
If symptoms returned full force then another full course followed by a taper might be indicated.
To use it with a gap between treatment and no recurrance of symptoms is not normal.

NanciT
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Re: Question about dificid taper

Postby NanciT » Fri Oct 06, 2017 12:13 pm

I can only tell you my personal experience. After this 10 month battle, I would not take medication unless I knew I was having a relapse. My relapses came anywhere from 2-4 weeks after stopping medications so it was a clear relapse.

These medications are harsh on the gut. I ended up on a long Dificid taper and here I am 3 years later with intermittent Post CDIFF IBS. It has been a very long battle. If there had been another way, I would have taken it but in 2014 the FDA came out with a risk warning on FMT's and all GI's in my area stopped doing them so there was no option for me. I was on a waiting list for 4 months do see the only GI who did them.

I also want to mention I never had a lot of diarrhea, just 3-4 times in the am but had vomiting along with it. It was not a mild case, I was very ill and the Dificid taper was my only option.

If you did have a relapse and considered a Difcid taper, do research on that. There are several tapers out there.

NanciT

Yogini
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Re: Question about dificid taper

Postby Yogini » Fri Oct 06, 2017 6:20 pm

Sorry if my query was inaappropriate. Didn't realize I was asking for medical advice.
Just wanted to clarify for others who may read this. In a previous post I described I am a 62 yo female who developed stool PCR + cdi after a course of clindamycin for cellulitis. My primary care MD (PMD)prescribed 10 days of flagyl. I had a relapse about 7 days later. I am a retired nurse practitioner so I researched treatment options for relapse. "Up To Date" , a comprehensive data base for medical providers on clinical practice, recommends Dificid as an option for relapse. Saw my PMD again and he was able to prescribe for me even though it is restricted at Kaiser to specialists. He referred me to see Infectious disease for continuing care of CDI.
I was really expecting this doctor to tell me I had to wait until another relapse for further treatment, but surprisingly that was not his protocol. He likes lengthy initial treatment followed by a taper. This doctor has over 30 years experience in ID and feels it is best to treat CDI aggressively in the beginning and not wait for multiple relapses, causing not only more exposure to antibiotics, but the emotional roller coaster of this diagnosis.
With the Dificid so recently finished, he felt I could just start the taper piece. He wanted to give me Vanco, but I requested trying the dificid, which seemed theoretically like it would cause less disruption to my microbiome.
The only reason I am explaining all this is to share my experience, as you all do. In medicine there may be many approaches to get to the same end. Treatment of CDI has changed alot over the years by trial and error. I have to wonder if perhaps aggressive treatment early on would lead to better outcomes than many of you have shared. No one knows for sure.
I will let you all know how I do with this.
Thank you for your time.

NanciT
Long Time Contributor
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Joined: Thu Sep 18, 2014 12:01 pm

Re: Question about dificid taper

Postby NanciT » Fri Oct 06, 2017 10:20 pm

Yogini

Often as moderators we need to tell posters we cannot give medical advice, it's important because all we really can do is tell posters about our own experiences and how we got through this.

We have a great deal of Medical professionals on this site, including myself ,so we are extra cautious. As a moderator it took me awhile to post carefully.
That is what Roy mentioned to you and we often post the same to others.

I have been on this site since 2014 and I can tell you the number of "Different" opinions we hear from various physicians is endless. I have not heard of a physician starting someone on treatment without an actual relapse. This is the first I have read and if it were me I would proceed with caution or as I tell most posters get a 2nd opinion.
I will say this can be a very difficult illness to treat. There are those who take one or two rounds and are on their way. Then other's like myself who have been in this field over 30 years, know a great deal of physicians and still have a very difficult time getting a protocol that would work. I actually did my own research and found a paper with a Dificid taper and convinced my GI to give me the RX, while I waited 4 months for the FMT. In the end, the taper worked but I am left with Post IBS.

Wishing you the best, our goal here is to give support and comfort to those suffering this terrible illness

NanciT


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