Average Relapse Time

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DaniDahlia
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Average Relapse Time

Postby DaniDahlia » Sun Jan 18, 2015 8:29 pm

Poll:
If you ever relapsed, how long did it take you to relapse?

Multiple relapses, please give those times, too.

Thank you!!

beth22
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Re: Average Relapse Time

Postby beth22 » Mon Jan 19, 2015 3:13 am

It really varies. My first relapse was 17 days after I stopped meds, 2nd 24 days, 3rd 30 days, but I had relapses after 4 months and after 7 months, so it really can differ quite a bit. Even now, 4 years after testing negative, I tested positive, but without the classic D symptoms. I had taken antibiotics about 6 months ago and also been in a hospital setting sitting with my mom in ER and visiting her at the hospital, so this could be a new infection rather than a relapse.

roy
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Re: Average Relapse Time

Postby roy » Mon Jan 19, 2015 5:15 am

Don't need a poll on that one.
Most relapses are within 14 days of finishing meds.
UK guidelines say that any return of symptoms after 30 days should be regarded as a reinfection from your own spores or a brand new infection.
Uk studies showed that around half of "relapses" after 30 days were a different strain .

Cb123
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Re: Average Relapse Time

Postby Cb123 » Mon Jan 19, 2015 7:07 pm

First relapse was six weeks after finishing vanco-i reduced my florastor from twice daily to once and within a week got sick (don't know if that's why but maybe?)
Second relapse I had finished my 14 days of vanco and had done one day of a pulse (one dose every three days for ten doses) and before I was able to take my second pulse dose I was sick again.

Bobbie
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Re: Average Relapse Time

Postby Bobbie » Tue Jan 20, 2015 12:43 am

It varies widely. I always felt "safe" when I'd been completely off meds for two months. A few have relapsed after siix months but that is rare.

megan2
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Re: Average Relapse Time

Postby megan2 » Tue Jan 20, 2015 12:55 am

I have been on vanco on and off for 7 weeks. Everytime I stop the meds I relaps badly. I just ended a taper a few days ago and the D is back 8- 10 times a day for the last 3 days. I have no idea how I am going to get rid of this. I am fine only when on vanco. I just ordered some VSL 3 which I will pick up from CVS maybe that will help.

Bobbie
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Re: Average Relapse Time

Postby Bobbie » Tue Jan 20, 2015 1:27 am

Megan,

I was on vanco off and on for four years during my first bout of c diff. and various other times. I have little fath in probiotics but twice I avoided c, dif after taking VSL3 along with a z pak. It did not work for me when I had to take ampicillin for a severe UTI that was not caused by E. coli -80 per cent are. It is supposed to be an excellent probiotic. See the newest post in Success Stories.

I know you are discouraged, but you will eventually overcome this. You have other alternatives we did not have years ago - Dificid and FMTs.

teresajo103
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Re: Average Relapse Time

Postby teresajo103 » Tue Jan 20, 2015 3:34 am

My first relapse....6 days after flagyl, second relapse...after 14 days of vanco.......last relapse....3 weeks after dificid. On vanco taper/pulse......every time I taper....I get sick. Down to twice a day.....supposed to go to one a day today...doctor says keep it at 2 for another week okay....by the time this is over I will have been on vancomycin for 8 weeks.....forever.....

NanciT
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Re: Average Relapse Time

Postby NanciT » Tue Jan 20, 2015 11:49 am

My first relapse was , 2 wks after flagyl. Then onto Vanco for two weeks, relapse after 10 days. Then on Vanco pulse taper for 6 weeks. relapse after 7 weeks.
Onto to Dificid for 10 days, relapse after 2 weeks. Dificid again for 10 days but this time ended up in the ER with UTI and was treated with Keflex(had culture and sensitivities) so they had me on the Dificid at the same time. I continued on DIficid for a 3 month pulse taper after doing a great deal of my own research. I found another poster here who did a long Dificid taper and found a research paper online to present to the doctors. I had been completely frustrated by my second GI and clearly felt this illness has very few "specialist". Waited months to see one and he thought I should continue with Dificid taper and was lucky my insurance paid for it. He will do an FMT if I were to relapse.

I am 10 wks out and tested Negative for the first time in 10 months! I have had IBS which can be terrible and have continued on VSL#3 which I believe helps the IBS.
I take one VSL#3 a day, tried Florester and could not take it. Have tried Kefer on and off but also had issues. Still having trouble with eating.

Interesting poll!

megan2
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Re: Average Relapse Time

Postby megan2 » Tue Jan 20, 2015 12:26 pm

Nanci how did you know it was a cdiff relapse and not irritable bowl. I cannot seem to tell the difference.

DaniDahlia
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Re: Average Relapse Time

Postby DaniDahlia » Tue Jan 20, 2015 1:24 pm

I love seeing the responses to the relapse poll! Thank you!

NanciT
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Re: Average Relapse Time

Postby NanciT » Tue Jan 20, 2015 2:19 pm

Megan, When I came down with C diff, I had severe vomiting each time. The usual symptoms, D, color etc but the vomiting for me is what stands out along with a Positive PCR.
This sadly put in the ER so many times unable to control the vomiting and dehydration, once I started treatment it stopped.
The IBS symptoms I have had post Dificid are typical and seem to be improving slowly.

justme
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Re: Average Relapse Time

Postby justme » Tue Jan 20, 2015 4:18 pm

IBS symptoms seem to continue for a long time for some of us. I am nearly two years from initial recovery and I still have IBS from various sources - mostly dairy and sweets, and any attempt at probiotics, no matter what kind or how little, results in painful gas cramps. It's getting frustrating, but it is what it is. I was lucky and didn't relapse. I feel for all of you who have relapsed. I hope your recoveries are shorter than mine and you can resume a normal diet without problems.
Aloha,
Anne

Tonja13
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Re: Average Relapse Time

Postby Tonja13 » Tue Jan 27, 2015 2:13 pm

Most of my relapses came within a week or two. Then I had a relapse due to antibiotics...it was actually a second round of antibiotics that did it to me about 8 weeks later. I spoke with the ID Clinical Trials Specialist at U of Chicago and she told me the most relapses come between 2 to 4 weeks after stopping treatment. It drops dramatically after that. The theory is that the lining of your gut "turns over" every 4 weeks or so, flushing most, if not all, of the C. Diff out. That's why most recurrences after a month or two are actually from new infections--overwhelming majority of the time they are completely new strains. Rare cases (very rare) have had a relapse around 6 months out with the same strain...it is unclear if the spore was dormant in the gut that whole time, or if they reinfected themselves with a long-dormant spore in their environment.

megan2
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Re: Average Relapse Time

Postby megan2 » Fri Jan 30, 2015 9:18 pm

I have been off the vanco for about a week and this am had horrible pain and many movements. I took my stool sample to the lab at the hospital and went over and got a copy of the results. It tested positive. I called my primary doctor and he is away till next wed. I called the gastro I was using and he is on vacation. His covering doctor is advising me to restart the vanco. The question I have is how much should I take. I was fine yesterday. Since I cannot reach anyone till next week and have many pills I don't know what to do. For anyone who has relapsed how many pills did you take when it came back. Did you go back to the full dose. I have no fever just cramps requent semi formed stools and feel horrible. Anyone who relapsed what did your doctors do ? Any advice would be appreciated.


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