Dificid

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
Feedback
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Dificid

Postby Feedback » Tue May 24, 2016 10:55 am

I originally posted about a week ago under the "treatments" section.

Just wanted to post my "so far" success story in order to provide some insight for those struggling with this infection.

After being diagnosed, I was out presribed the standard 14 day course of flagyl. I relapsed at the 3 week mark. This surprised my doctor as my original infection was mild.

My doctor then prescribed Dificid. I consider that very progressive, as many doctors go immediately to vanco for the first recurrence.

While on the dificid, I had a massive increase in D on about the 4th day of taking it. I went to the doctor the following day, and she said it may not be working but to finish the ten-day course. (I did not have an increase in symptoms after that.) But, if anyone is wondering if dificid can cause D, yes. It did for me. In fact, that particular day presented the worst symptoms I had had thus far.

After finishing the dificid, I have never had one solid stool. Not one. They have been loose, D the entire time. I was EXTREMELY nauseated for about three weeks after the dificid, as well. The nausea still comes and goes, and my stool has yet to be fully formed. Because of this, I retested a few days ago (on the 31st day after completing the dificid). There was no doubt in my mind, because of my symptoms, that the test was still positive.

I am happy to say, it was negative. And yes, it was the PCR test, and the very first negative test I've had in four months. While I realize, only being about 5 weeks out after completing the dificid, that I may still relapse, the dificid has offered me my first negative PCR. I am happy about that. It does work, and as someone said to me on this site, the EARLIER you are prescribed the dificid, the better. Ideally, it should be first-line treatment. My insurance covered it, no problem.

Lisa33
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Re: Dificid

Postby Lisa33 » Tue May 24, 2016 12:55 pm

Congrats on the negative test! That is great news and glad that things are getting better for you. I wish you continued improvement!

georgina
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Re: Dificid

Postby georgina » Wed May 25, 2016 12:41 am

I'm glad that you posted in success stories as it gives hope to others that are still suffering. Happy to hear that you tested negative , and you are right , Dificid should be first-line treatment.

Feedback
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Re: Dificid

Postby Feedback » Thu Jun 23, 2016 12:55 pm

Update: A second PCR test a little over a week ago yielded another negative result. I am about 70 days post Dificid, and my symptoms have gotten better every day...though I am not back to pre-c diff normal (maybe never will be). I've had MANY symptoms post-dificid, so do not let this discourage you and send you into the tailspin of relapse worry. From start to finish (if there ever is one ;)), it took a total of 4.5 months for me to feel better!

I cannot stress enough that dificid should be prescribed EARLY in treatment--the earlier, the better. There is no doubt in my mind that had I been prescribed flagyl again, or even vanco, that I would have exacerbated the relapse cycle. Most doctors will not prescribe dificid for the first recurrence, and I was so lucky to have a doctor who did! Ideally, though, it should be the first-line treatment option, but a first recurrence option is a close second. Be proactive with your doctors! There is a lot of research that shows that dificid is meant to be prescribed MUCH earlier than it most often is.

Also, I would encourage all to research Seres Therapeutics, specifically their oral microbiome, SER-109. While the second phase of clinical trials is closed, they do offer an assistance program for those who have refractory c-difficile (granted you meet certain requirements). It is different from all other FMT options, as it is, from what I've researched, the most purified form--no chance of disease transmission. Their phase 3 clinical trials should open sooner than later.

Bobbie
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Re: Dificid

Postby Bobbie » Thu Jun 23, 2016 9:47 pm

Thanks, Feedback. Glad you are doing well.Seres phase 3 trial sounds very promising.

ramu
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Re: Dificid

Postby ramu » Tue Jul 05, 2016 11:51 am

Thanks for the update. It is great that dificid did so well for you. Are you still wd status? Any relief from that? I wish you the very best.
Jonathan

hht7899
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Re: Dificid

Postby hht7899 » Thu Sep 13, 2018 11:56 am

I realize that your post is from May of 2016, but I am thankful that I ran across it as my case sounds similar. My symptoms overall were mild when I was diagnosed with Cdiff. Took the flagyl, relapsed, took the vanco, relapsed, and now I am on day 7 of dificid. I was feeling good until day 6 on the dificid when I began to get some soft stool and cramping - basically worse symptoms than I had before starting it. Of course I read that D can be a side effect, so I tried not to worry myself. Feeling a little better today, so I'm going to stick it out for the 10 days prescribed in hopes that this med FINALLY gets rid of this crap for good.

Also, I would love to know, if you're still hanging around how you are doing now? Have you had any recurrences since?

NanciT
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Re: Dificid

Postby NanciT » Thu Sep 13, 2018 1:44 pm

Hello hht7889 Welcome to the site, please read the first thread for all new posters

This thread is generally where people posts their success stories, it's better to post under general or questions so people will respond. Often these threads are older here and posters may not return.

I had a long CDIFF story with several relapses(5) over a year. I was on Dificid for 10 days and did well on it, but did relapse. I then went on a long Dificid taper...and it worked. We have many posters who have done great on Dificid, and several who went on a 30 day taper.

If you put Dificid in the search bar you can read the threads.

I want to add on my long taper I did not feel well...at all. I was sick most of the time, not alot of D, just felt ill and had abdominal pain etc. It took me awhile to feel better post Dificid.

Feel free to post on threads where it will be seen

Wishing you the best with this, Dificid can work!

NanciT


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