Can you relapse 8 months later?

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scd
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Can you relapse 8 months later?

Postby scd » Mon Jul 22, 2019 2:33 am

I am in my 20s, female. I had IBS before c diff, and I also have several other conditions that leave me homebound/bedridden.

I got c diff in January 2019 and after one course of vancomycin didn't have anymore symptoms. The month before I got c diff I had a lot of stomach pain. I am very nervous now because for some weeks I have had pain everyday and similar symptoms to when I had the initial onset of c diff. I havent had wd, but it has been very loose, I have some cramping and my stomach has been gurgly. I feel incredibly anxious because combined with my other health issues going through c diff again seems unbearable.

I haven't been exposed to c diff, and I have had 3 negative tests since I was sick. Is it possible that my gut flora is so messed up I could relapse? How likely is this? Trying to calm my nerves.

Thank you in advance for any responses.
(I am working with a doctor, but I wanted to see if anyone got it again after some time)

georgina
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Re: Can you relapse 8 months later?

Postby georgina » Mon Jul 22, 2019 3:40 am

It's unlikely to relapse after 8 months of recovery since you had no exposure and no antibiotic use. You said you had issues with IBS before , it may be possible that something you ate triggered a IBS flare up. However , if your symptoms don't subside you can test again, at least to have peace of mind. Try a bland diet for two or three days until things settle and maybe add a probiotic.

scd
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Re: Can you relapse 8 months later?

Postby scd » Sat Aug 03, 2019 3:21 pm

THank you so much Georgina,
I did end up having it again, symptoms became severe. I am being treated with dificid, no pulse or taper though. Is it common to do a pulse or taper with dificid for first recurrence?
I was taking a very strong NSAID about once a month, and I read there are connections between NSAIDs and cdiff. Wish I would have known.

brandine
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Re: Can you relapse 8 months later?

Postby brandine » Sat Aug 03, 2019 4:18 pm

Hi, scd.

After I recently feared a possible relapse, which would have been a 1st recurrence (I ended up not having to treat), I met with an infectious disease doctor who said that he would do a 10-day dificid treatment for a first recurrence, which is the new standard via the Infectious Disease Society of America's recent 2018 recommendations; OR a vanco taper is recommended for a 1st recurrence. Dificid is considered superior by many, but it is very expensive. Interestingly, my ID doctor says he doesn't really believe that tapers are ever warranted, and he seems to be doing more research into this. I do know that others have had success with tapers of dificid but usually for a 2nd (or more) recurrence.

When you say that your symptoms became "severe," could you clarify what you meant? How was it determined that you should treat? I just know that there are a lot of us on this board curious about how this decision is made. For example, I had 2 days of D. a couple of weeks ago and a positive test, but the ID doctor said not to treat because by the time I went in, the symptoms have subsided. Now it's 2 weeks later, and I'm still doing well... hoping that I stay stable.

Thank-you. I hope that your dificid treatment goes very well... it seems that many have had a lot of success with it. That will definitely be what I go with should I experience a first recurrence down the line.

Brandy

scd
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Re: Can you relapse 8 months later?

Postby scd » Sat Aug 03, 2019 7:41 pm

Brandy, thank you for your response. It is very comforting to hear dificid seems to have been successful for many people. I really hope it works for me. My primary said if it is not successful he will reach out to ID doctor who does FMT.

I had the same onset as last time, stomach pain, and my stools were getting looser and looser for about 3 weeks, even with a medication I take that is very binding/constipating. Without that medicine I would have been having D. Several physicians thought my chance of having it now was low, so my primary said I could increase the dose of my constipating medicine if I was having loose stools. I continued to get worse even with the medicine and ended up having D. >20 times a day at worst.

My PCR was positive- so infectious disease decided to treat based on that and the fact the D. was only worsening with time. Originally I was started on vanco at the hospital, but my primary switched me to fidaxomicin, which was surprisingly affordable with my insurance. (I am incredibly lucky).

It is interesting to hear that your ID doctor doesn't believe that tapers are warranted, I am curious what his thinking is. All the doctors I have consulted also didn't think taper/pulse was necessary.

Again, thank you so much for your kind response. My fingers are crossed you stay cdiff free.

georgina
Long Time Contributor
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Joined: Sat Sep 12, 2015 10:07 am

Re: Can you relapse 8 months later?

Postby georgina » Mon Aug 05, 2019 2:21 am

Scd
Dificid might be your magic bullet , it often works when everything else fails , although some people had better luck when it was used in courses longer then ten days. As you probably know , it is made to target only clostridia species so it won't touch the good flora . You should also add a probiotic. For me the only probiotics that did something were : Saccharomyces boulardii and the Megaspore (witch in my opinion is the best option even though it's pretty pricey).


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