cdiffdiscuss.org

Just when I thought I was about over this monster it's back. It will be two years next week since this nightmare started. I've been on flagyl, vanco, dificid, and had the fmt last October. I still tested positive two months after the fmt but then was put on dificid and after a few weeks tested negative. I have still had all the symptoms for the past year, constipation,diarrhea, pain, nausea, but tested negative until this week. I'm waiting for the GI Dr. to call but don't know where to go from here. Should I do another fmt,restart the vanco, or start the dificid again. I know there are no easy answers but if anyone has any suggestions I would appreciate it. Thank you. Larry.

Larry

If you tested negative, it's negative. Have your GI look into other possible issues. Many of us end up with GI issues after CDIFF, the Post IBS can be very difficult to deal with. I would always rule out other things, I went through a lot of testing Post CDIFF. I had several relapses also and ended up on a long Dificid taper to get rid of it but that left me with other issues.

I know how frustrating it can be, you just want to feel well and move on but it can be difficult.

Sorry you are going through this

Nancit

I agree. If you are testing negative there might be other underlying issues. Talk to your GI or get a second opinion?

Sorry, I didn't make it clear. They just did a culture this week and it's positive.

Are you sure it was the CDIFF test? I ask because it is not a culture. It's called a PCR test. If it is and it's positive again, I would talk with your GI about a Dificid Taper.

I also failed Dificid but then went on a long taper and finally got rid of it. Look under CDI, there are several on this site that went on a taper after several rounds of medications.

Sorry it is back, I know how frustrating it all is. I also wondered if it's time for a second opinion, especially if the GI will not go along with a taper. I had to change GI's several times. That's something I have never done but had no options, I could just not get rid of it.

Wishing you the best with this

NanciT

Nancy, thank you. You have been a great comfort. It's a long story but, for various reasons, I have been through five gi's. The last two perform fmt's. I talked to them a few months ago and they were not aware of the dificid tapers. I will bring it up again. It's very expensive but I think I would rather do that first before another fmt. One good thing--I now have a primary care doc who has had a lot of experience with cdiff--even had one patient who did not survive--so he's taken a special interest in me. A note to newbies at this--I went eight months without being diagnosed because I did not have the typical horrible diarrhea, so be insistent on being tested. Thank you again. Larry.

Nancy, sorry--part II. They tested for toxins a and b and it was positive. Do you know the details for the dificid taper? How much and how long? Thanks.

It s good you have a primary who has experience with CDIFF. Great to hear he has taken a special interest in you!

Sending info

NanciT

Allenb, sorry you are having to go through all of this. Kudos for you for hanging in there and still seeking treatment.

You might ask your doctor about taking Dificid plus an IV dose of Zinplava. You can search this site for it as at least one person (cnatra) has tried it.

I did a Dificid taper that was 2 pills for 10 days, then 1 per day for 7 days, then 1 every other day for 14 days. I did a FMT at the end of this two weeks ago. Hopefully it will work.

Hi allenb,

Here is a link to an article describing Dificid (fidaxomicin) tapers for recurrent c diff:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/

My daughter relapsed 4 times - 2 after Flagyl and 2 after Vanco. Her Dificid taper was 2 pills a day for 14 days, 1 pill a day for 14 days, then 1 pill every other day for 7 more pills.

She was scheduled for an FMT during the taper but she never needed it!

Good luck.

Another vote for the Dificid taper , good option for a stubborn case of Cdiff. And also Zinplava is another good option to consider as Frank suggested . Cnatra did Zinplava during his Dificid course , i belive that this regime did the trick for him.

Thank you again to everyone. Just talked to my dr's pa who said the Dr wants me to do another fmt. I said I would rather do the dificid taper. She said it was still experimental and insurance would not cover it so could be $5,000 or more. I will have to talk to ins co Monday. Whether they call it a taper or just a regular prescription hopefully they will cover at least part of it and I can get an order for 30-40 pills. Will this nightmare ever end?

If your insurance will not cover it, there is an assistance program from Merck for those that qualify. See http://www.merckhelps.com/DIFICID.

There is a lot online about a Dificid taper. Interesting comment by the PA, I was not able to get an FMT in 2014 because the FDA stated they were experimental and where I am I could not find a GI or ID to do one, was on a waiting list for 4 months with the only GI who would do them. The Dificid taper was life saving for me.
The GI did not do the FMT, he felt the Dificid taper would work......and it did!!

NanciT

Dificid is internationally approved for the treatment of c.diff, it is NOT experimental!