Relapse -- how quickly?

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Judy M.
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Relapse -- how quickly?

Postby Judy M. » Sat Apr 28, 2007 4:19 pm

This may be an unanswerable question, but . . . when you go off Flagyl and the C. diff hasn't really cleared up, how long before symptoms return? Our kids want us to visit four days after I finish Flagyl, but it's a 2 1/2- to 3-hour trip, and I don't want to get "caught" in the car. I will be continuing the probiotics.

Again, this probably varies from case to case, but I'd be interested in reading about the experiences of others.
Judy M.
Albany, NY

whitepine
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time

Postby whitepine » Sat Apr 28, 2007 7:07 pm

hi Judy,

Well, we are all different but it can come back at any time.
Some folks relapse a day off flagyl, others up to 6 weeks.
Just keep an eye out and have the stool test order ready to collect the first diarrhea after you have been off flagyl for a few days.
Hopefully there is no relapse. Many docs are now using vancomycin with a xifaxin chaser to try to prevent the relapses. Also, florastor and probiotics taken during and after treatment. :)

labgirl
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Postby labgirl » Sat Apr 28, 2007 10:04 pm

From reading past posts, it seems like it's different for everyone. I can give you my very recent experience. I've been treated for C diff for a little over a year now- 2 rounds of Flagyl, in which I felt it was never really gone, then many months of xifaxan, only to relapse after a week off, and more recently, a long tapering dose of vanco for almost 4 months. I got down to one vanco dose a day and did that for 2 weeks, then came off completely about 2 1/2 weeks ago. After 2 weeks I started having colon pain, then started passing a lot of mucus, then came the flu-like feeling and felt so bad that I was out of work this past Thursday and Friday. I submitted 2 stool samples for C diff- one on Thursday and one Friday. Both came back negative. I finally started back on vanco on Friday, the called the ID doctor and they put me on xifaxan for 2 weeks. It's amazing how quickly the medicine works! I'm hoping that along with probiotics that this thing will clear up. I was hoping the vanco taper would do the trick, but I'm also hoping there's still some good bacteria that will eventually take over. You may want to have extra medication on hand in case you relapse, but if it's not really gone, vanco worked a lot better for me and does for a lot of others as well.

Nancy1
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Postby Nancy1 » Sat Apr 28, 2007 10:06 pm

I always relapsed between 3 - 5 days after Flagyl or vanco. As you know, everyone is different. I believe that most people relapse within 14 days, but as whitepine says, it can be much more time than that. You are supposed to be safe after 10 - 12 weeks.

diane
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Postby diane » Sat Apr 28, 2007 11:02 pm

I usually relapsed about 4-5 days off of the vanco.

Bobbie
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Postby Bobbie » Sun Apr 29, 2007 2:08 am

I relapsed anywhere from several days to 6 wks. off Vanco.

Sheila1
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Postby Sheila1 » Sun Apr 29, 2007 5:33 am

I've relapsed in 48 hrs earliest, on up to 30 days last major one. I well remember not being able to plan anything in a definite form, it was always "I'll let you know that day" depending on how I felt when I woke up and started the day.

Quite a few people have taken Pepto tablets or Immodium, you might ask your doc about travelling with a supply for the 'just in case' need. Even now, I never travel without my Vanco.

If it were me....I'd call the doc and ask if I could continue the Flagyl until after my visit.

On the brighter side, reports say 80% or so are still cured with 1 or 2 rounds of medicine so we'll hope this dose does it for you!
~Sheila

Christina
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Postby Christina » Sun Apr 29, 2007 7:33 am

I had one relapse after 6 days and the rest were between 2 and 6 weeks off of meds.
I always had about a 24 hour warning before hand so if you have figured out your pattern you should be OK. It would also depend how quickly you can stop your relapses in case you relapse while there. I always could stop mine in 24 hours or so because I took very high doses of Vanco. I used to travel all of the time when I had active C-diff.Both of my kids compete in gymnastics so we would travel all over Ohio and Indiana. Just pack your Vanco and maybe Pepto and you should be OK. Do remember though that Pepto will not stop a relapse only make it somewhat more tolerable. I have relapsed several time while taking 8 Pepto's per day(tablets). Immodium would most likely be the one to stop it but since it's controversial w/ C-diff you'd need to run it by your Dr.. Mine always approved of it but every Dr. is different.
If you let C-diff stop you from doing things you enjoy then you are only giving in to it,you'll never recover. I'd try to do the things you enjoy as much as you can and while you can. Good luck and have fun.

diane
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Postby diane » Sun Apr 29, 2007 8:30 am

Let me add I also relapsed while tapering and pulsing and those were 4-6 weeks when I did that..

Judy M.
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Postby Judy M. » Sun Apr 29, 2007 9:28 am

1. How soon after you stop Flagyl will you *not* automatically test positive? My doctor's office said that I will test positive for a while regardless of whether I'm "cured."

2. I'm especially concerned about the difference between IBS and C-diff. Without getting too graphic for this section of the forum . . . I don't detect a huge difference between the two.

As I probably mentioned, this wouldn't be so much of a concern if we weren't going to be flying and then moving from NYS to FL. I have to find all new doctors in FL, which I'm working on now, but I feel this black cloud over my head . . .

Thanks for being here!
Judy M.
Albany, NY

Bobbie
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Postby Bobbie » Sun Apr 29, 2007 1:49 pm

Judy M,
I don't believe everyone automaticlaly tested positive after being "cured." Some people do but but are not treated any more unless they have symptoms.

C. diff. & IBS symptoms are similar. To help tell the difference, see FAQ-Three Day Rule. Also see FAQ-IBS. Not everyone develops IBS after C. diff. -- about l out of 5.

Call teaching hospitals in Florida & explain your situation. I'd see a GI, especially if your C. diff. continues.

It's an added stress to move during all this. We moved shortly after my son had C. diff. I traveled when I had active C. diff. but moving is a lot more stressful.

Good luck.

Jodie
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Postby Jodie » Sun Apr 29, 2007 10:10 pm

I usually relapse between 3 and 9 days....never made it past nine!!

Judy M.
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Postby Judy M. » Mon Apr 30, 2007 8:36 am

Okay, so it would be based on symptoms.

I already have IBS, which is why I was concerned. I do see very slight differences but, to be honest, not enough to feel confident that I would be able to tell the difference between IBS and C. diff. I've been on Flagyl for 10 days now and feel as though I've reached a plateau. I liked it better when I saw a little bit of progress each day or two.

I will definitely be finding a GI in Florida, along with the other specialists I need. The hard part is getting someone quickly. It would be easier to wait until I'm down there to get references, etc. -- but I may need someone sooner.

Yes, moving is definitely an added stress. I've been reminding my husband of that. If we weren't moving, all I'd be thinking about is getting well. I'm just very happy that our flights for the walk-through and closing are not first thing in the morning. That's my worst time. When we actually make the move and drive down, that will be a little more difficult if I'm still having problems. Of course, even with IBS that's a problem . . . but I can take Imodium with IBS. That's where it's going to get tricky.

Thanks for your good wishes!
Judy M.
Albany, NY

Judy M.
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Postby Judy M. » Tue May 01, 2007 12:09 pm

Judy M. wrote:I've been on Flagyl for 10 days now and feel as though I've reached a plateau. I liked it better when I saw a little bit of progress each day or two.

Update: In thinking about it, I haven't really seen much progress in over a week! I will have been on Flagyl and Flora-Q for two weeks on Thursday night (two days from now). I put in a call to the GI doc but was curious to know whether this is just a plateau -- or a sign that the Flagyl isn't working. My "schedule" isn't too different from when I have an IBS flare-up (but I can take Imodium for the IBS), but the consistency is not the same. (I hope that's not too graphic for this section.)

This forum has been a wonderful source of information and support. Thanks for being here!
Judy M.
Albany, NY

Christina
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Postby Christina » Tue May 01, 2007 12:51 pm

If you are still having frank diarrhea and cramping it may be the Flagyl dose is not high enough. I don't know what dose you are on. I was on 500 mg 3X/day and then 250mg 4X/day. Neither dose stopped my diarrhea and I still tested positive while on it but, it turned out my strain was resistant. Your stool will never be normal on Vanco or Flagyl and that may even persist when you are off of the meds. Both Vanco and Flagyl can also cause just plain old Antibiotic Associated Diarrhea. If you have seen some improvement from taking the Flagyl then that would be a good sign. No improvement would be troublesome. I'd still check w/ your GI and follow his advice.


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