cdiffdiscuss.org

Hi all,
Yesterday (3/15) was my last day of a Dificid taper/pulse (10 days of 2 pills a day, then 7 days of 1 pill a day, and then 26 days of 1 pill every other day). I seemed to do well on Dificid; my symptoms - the main one being severe colitis (passing M frequently) - mostly resolved pretty quickly once I started taking it.

However, today I had some M again - something I hadn't noticed since early on in the DIficid course, like over a month ago. I know about going by the 3-day rule, etc, and there's an adjustment period, but there's of course the worry about relapsing, and what my next course of action would be. I'd have to call my GI or PCP and figure out how easily I could see or talk to them with the covid-19 stuff going on, and I don't trust that my PCP is aware of appropriate treatment options.

So my refresher questions in the event I do get worse would be: Is Vanco an effective treatment if taken after a failed course of Dificid? Should I take a c-diff stool test if the doctor orders it, or is it not accurate so soon after treatment is completed? And if my GI recommended FMT, I think I've seen that it should be done immediately after completing a course of treatment, not when one is experiencing full-blown c-diff?

If you take a stool test shortly after finishing antibiotics, it will most likely not be accurate. Taking vanco would defeat the purpose of having taken Dificid, which kills much less good bacteria. If your symptoms continue, I would check with the doctor to see about continuing with the Dificid. A little M should not be of concern, but if things get worse contact the doctor and ask about taking Dificid or testing if this happens further out.

Thanks, beth22. I see what you're saying about the Dificid killing off less good stuff than the Vanco, but my concern is that if it didn't "take" for me after a month and a half of being on it, is it going to "take" if I simply go on it for longer, or would I just relapse again at some point...

I think I've seen a few people on the board who have relapsed after Dificid, and I'm wondering what their next steps were - I thought I had seen one person who went on Dificid for 3 months (NanciT?), and others who were put on Vanco?

I know all I can do is watch/worry/wait for the next few days, and then see what my doctor says if my symptoms get worse - I'm just wanting to think through the possible options!

I would say hang in there, it takes time to recover. It sounds like you were on a good taper. I have not heard of anyone relapsing after a taper.

I did relapse after the initial10 day of Dificid, but I am the one that went on a 4 month taper. This was in 2014/15 and I had been sick a year, had 5 relapses and the FDA all but banned FMT's. The only reason I went on a long taper is I found a research paper on it and the only GI in the area doing FMT's had a 4 month wait.
Once I saw him, I completed that taper and it took me a long time to recover. I tell everyone to give it time, the gut goes through alot, BM's will be all over the place. For me this lasted a very long time.

Since then, it has been on and off scares. Right now I am on Keflex for a bad infection. I do worry, it's the 3rd time in a year but I am pushing through, hoping for the best and know that if were to come back, a Dificid taper ( probably 30 day) would be my first line of treatment.

Take care, give yourself time to heal and if you have concerns, call your GI. I did not test for a very long time and that was only after taking antibiotics

NanciT

Thank you for sharing, NanciT! I'll cross my fingers and see how things go.

One note is that I've actually been able to eat pretty "normally" while on Dificid, unlike when I took Flagyl (horrible stuff!) 9 years ago. Maybe I pushed it a little too far and should stick with blander foods for the time being. That and overall stress could definitely be contributing to things.

Elvish2, how are you doing? Hope it wasn’t a relapse and it was just part of the recovery process? Today is my 2nd off the Vanco after completing 10 days dose, and I am also very nervous and keeping my fingers crossed. I have abdominal pain and fatigue but BW are down 1 or two per day not quite normal formed yet, but no M.
Hang in there, I hope all goes well for all of us - take care

Don’t get freaked out after the meds run out. I know it’s easy for me to say now but your gonna have a bumpy road ahead and think your relapsing at least a dozen times. I did. Unless your blowing yourself apart or in the same boat you were in that caused you to seek treatment, your going in the right direction.

Hi. I'm reaching out for a family member who was on a 10 day course of Dificid then 20 days after that was the taper of once daily. He had three episodes of C Diff which were quite seious with Sepsis where he was treated for those with Vancomycin. While he was on Dificid he was asked to begin taking Culturelle (which he does) and also to have an infusion therapy of Zinplava which binds the toxin, an antibody. He is now on day 14 post Dificid. We are watching him very carefully and screening every little symptom because he had gotten hit so hard and so fast each time. Of course with the current Corona Virus status in place it also places an extra concern should we need to get quick medical attention.

However the Dr who treated him is optimistic that if he can make it to day 21 he will be in the safe zone. As they don't have a lot of data on those who were treated with Dificid after mutliple recurrences they are basing this on what research they do have.

IN regards to knowing what is next, we were told that if this was not successfull he would have to have a FMT. We are praying that he won't have to as he has been subjected to an awful lot after having a major surgery last August. All of this followed that surgery and we just got him back home oh March 3rd.

I hope very much that you will be not have a recurrence but know there are other options but you must be quick to observe and take action. Our DR gave us a stool kit and also advised us to call the office immediately should we note any symptoms of this returning. God bless. Wishing you all the best.

Thank you Ron, hope all goes well with your family member

I have had more than one FMT, but I don't know if they would even do them now with the virus. I used family members. In the worst case, your doctor can always start him back on Dificid until the corona virus pandemic calms down a bit. Be sure to communicate with your doctor if things go bad right away.

Just wanted to update this thread that I'm now 11 days out from finishing Dificid and doing pretty well overall. Going to be on edge until I at least hit that 1-month mark, but I think it's a good sign that I've made it this far!

Elvish,
Glad to hear that and hope it goes well. Are you also still having the abdominal discomfort, cramping and gas.. I am on my 6th day off the Vanco and still have all the above issues

Ali-Mar - things have gotten slowly better over the course of and then after treatment, but I am still having some gurgling/gassiness, little bit of on-off stomach and abdominal pain, tenesmus, occasional crampiness, general ups and downs. Recovery is definitely a process.

I am having similar issues, I am glad to hear it is part of recovery. I thought, maybe 10 days of Vanco didn’t kill the bug for me.. Because I am still having a lot of abdominal discomfort, cramping, gas and tenesmus

Elvish2 wrote:
> Just wanted to update this thread that I'm now 11 days out from finishing
> Dificid and doing pretty well overall. Going to be on edge until I at least
> hit that 1-month mark, but I think it's a good sign that I've made it this
> far!

That is great news!! Wishing you full recovery
.