Pepcid and C Diff recurrence

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deb30
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Pepcid and C Diff recurrence

Postby deb30 » Fri Mar 31, 2023 6:02 pm

Hello everyone. I currently take oral Diclofenac (75mgs once a day) for my arthritis. I have to chew a pepcid before taking it or I develop painful gastritis. Diclofenac works so well on my arthritis and makes me feel like a new person. I'm on my 2nd recurrence of C Diff, following a 2 1/2 month vancomycin taper. Came back less than a week after my last pill. Back on 1 pill a day until I can see the gastroenterologist April 11 for next steps. The 1 pill holds everything in check. Everything I read says that acid reducers are bad for C Diff and to avoid them if possible. I can't imagine living my life just on Tylenol Arthritis. On top of that, I think I now have a UTI and I'll need a course of Macrobid to take care of it. When it rains, it pours. Anyone out there know anything about Pepcid on a daily basis? How about the Macrobid? I've heard it's a "safe" antiobiotic? I'm a 64 yr old female, dx in Dec. with C Diff after taking Cipro/Flagyl before and after surgery in November, and then a big hit of Clindamycin during the operation itself. Began diarrhea the last week in October, so 5 months of dealing with this. I'm so frustrated and confused.
Dx Dec. '22 after having symptoms from a combination of Flagyl and Cipro for 2 weeks pre-surgery and IV Clindamycin during surgery. Vancomycin for 10 days, relapse 11 days later. Vancomycin long taper from beginning of Jan. '23 to May 1, '23.

NanciT
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Re: Pepcid and C Diff recurrence

Postby NanciT » Fri Mar 31, 2023 6:22 pm

Sorry you are going through all of this. It can be so difficult to get rid of. Yes, Pepcid and any other acid medication can put you at risk but it may be you never got rid of it. I had several relapses over a year until I went on Dificid. It is the only thing that finally worked for me. The Vancomycin caused me many issues and can irritate the bladder....which then gave me a UTI and it was an endless circle.

If you are still dealing with CDIFF, ask you GI about Dificid. I actually took a DIficid Taper but your GI would have to discuss that with you.

It was a long road for me, but after all this I had to go back on Aciphex....much worse than Pepcid. I am still taking it and thankfully no CDIFF.

Take care and I hope you feel better soon


NanciT

deb30
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Re: Pepcid and C Diff recurrence

Postby deb30 » Fri Mar 31, 2023 7:31 pm

Thank you so much! I feel sometimes like I'm a hamster in a wheel, just spinning around, going nowhere. When this second long taper of vanco failed, my primary (who has been handling this so far) told me to get in to see a GI or ID doc. Everyone I called said they couldn't see me until the end of June or July. Really???? I feel like I'm living in a third world country, not the US. My primary finally made a call and got me into a GI who also performs FMT is necessary, but not for another 2 weeks. That's fine. The 1 250mg of vanco holds me just fine. I want a doc who will tell me "I will get you better. It make take a few tries, but I will make you better." I need someone to hold my hand and tell me that it will eventually be taken care of.
Dx Dec. '22 after having symptoms from a combination of Flagyl and Cipro for 2 weeks pre-surgery and IV Clindamycin during surgery. Vancomycin for 10 days, relapse 11 days later. Vancomycin long taper from beginning of Jan. '23 to May 1, '23.

GtrGrl
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Re: Pepcid and C Diff recurrence

Postby GtrGrl » Sat Apr 01, 2023 1:17 pm

It will be taken care of. Something will work eventually, even if you have to have an FMT. Like Nanci suggests, do ask about Dificid. It targets C Diff specifically. Vanomycin didn't work for me either and it annoys me how much weight medics put behind it (I suppose because it's cheaper). With regard to the UTI, definitely try to find out which bacteria, if any, is causing that so you use the right treatment (I will message you the name of a US company that offers advance testing in case you want to go down that road). Hang in there!
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

deb30
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Re: Pepcid and C Diff recurrence

Postby deb30 » Wed May 24, 2023 1:32 pm

I finally got in to see a gastroenterologist who does FMT and C Diff treatments at the University of Chicago. At least I now have a doc that says "the buck stops here." I went off the 1 pill of 250mgs vancomycin on Friday, May 19, and Monday had some stomach upset and 1 watery BM. Normal yesterday, but 2 watery BMs this morning. The doc suggested that if I relapse, he would put me on Dificid first, possibly with a Zinplava infusion. Here's my question: after being on the once daily vanco for months and months, will my bowel recovery be up and down like this for awhile? How do I know that its the C Diff coming back? He sent me home with a stool sample kit in case my symptoms resurfaced (and I did just email him now with the particulars), but is it possibly normal to have these ups and downs after discontinuing the vanco until my gut bacteria stabilizes? I've been taking Florastor and BioK+ daily now since January to try and help the situation.
Dx Dec. '22 after having symptoms from a combination of Flagyl and Cipro for 2 weeks pre-surgery and IV Clindamycin during surgery. Vancomycin for 10 days, relapse 11 days later. Vancomycin long taper from beginning of Jan. '23 to May 1, '23.

roy
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Re: Pepcid and C Diff recurrence

Postby roy » Wed May 24, 2023 6:10 pm

Yes that's normal.
Bobbie created what we call the 3day rule
If you get D 3 times or more a day for 3 days in a row then suspect a relapse but anything else is "normal"
And don't test unless you fail the 3 day rule.
The cure happens when your body defeats any remaining c. Diff but while it's doing that you can test positive.
You will know if it's back!!

roy
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Re: Pepcid and C Diff recurrence

Postby roy » Wed May 24, 2023 6:35 pm

2 other points.
A recognised side effect of vanco is symptoms similar to a UTI.
Don't treat on symptoms alone, make sure it's actually an infection.
Vanco would have been killing most of the BioK.
Now your off vanco you might have to reduce the amount you take or stop it completely.

deb30
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Re: Pepcid and C Diff recurrence

Postby deb30 » Wed May 24, 2023 7:03 pm

I've been trying to take only half a pepcid in the morning with the diclofenac. The U of C gastro seemed to think that pepcid shouldn't be an issue-- just PPI's or prescription strength reflux meds. I'm halving the pepcid anyways though, to err on the side of caution. He answered my email right away today asking about if or when I should retest based on today's watery BMs and he wants a sample tomorrow..... I'm hearing you loud and clear on the testing too soon part.... not sure what I should do. The previous gastro that kicked the can down the road when I relapsed after the long vanco taper tested me when she put me back on the 1 vanco per day and it all came back negative. When I asked if that was a false negative, she said no, the PCR and other assays would have still come back positive even on the vanco???
Dx Dec. '22 after having symptoms from a combination of Flagyl and Cipro for 2 weeks pre-surgery and IV Clindamycin during surgery. Vancomycin for 10 days, relapse 11 days later. Vancomycin long taper from beginning of Jan. '23 to May 1, '23.

beth22
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Re: Pepcid and C Diff recurrence

Postby beth22 » Thu May 25, 2023 8:17 pm

If you took your last vanco on May 19th, you could still test negative on a c diff test. But, check with your doctor. It also depends what type of test you get.

deb30
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Re: Pepcid and C Diff recurrence

Postby deb30 » Fri May 26, 2023 5:09 pm

Thank you to all who responded with your wealth of experience. After 2 more loose BMs yesterday and gassy issues, I turned in a stool sample this morning. The result came back negative this afternoon, but 8 days out from my last vancomycin pill this could be a false negative? The test was "C Difficile Assay by PCR." So how accurate is this, considering the short window from the last pill? I did email the doctor-- Dr. Sakuraba from U. of Chicago, who does FMT and treats C Diff-- and he says that this is great news and most likely just my digestive tract recalibrating after the prolonged infection. I sure hope he's right. If you're familiar with the Bristol Stool Scale (what a handy guide!), the funky BMs I get are 5's for the most part, along with bloating and gas. I'll continue to take my Florastor and BioK+ and keep my fingers crossed. 1 week out is waaaaay too early to celebrate....
Dx Dec. '22 after having symptoms from a combination of Flagyl and Cipro for 2 weeks pre-surgery and IV Clindamycin during surgery. Vancomycin for 10 days, relapse 11 days later. Vancomycin long taper from beginning of Jan. '23 to May 1, '23.

NanciT
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Re: Pepcid and C Diff recurrence

Postby NanciT » Fri May 26, 2023 8:39 pm

Recovery can take a long time for some...for me it was a very long time. I was on treatment for 1 year ( Vanco and then Dificid taper) and recovery was long. Some on the site recover quickly. Everyone is different.

I had been on Pepcid with no issues. Last year because the pepcid was not working well, I had a esophageal blockage. There was no option for me to go on PPI's. It was a serious situation and I have now been on Aciphex ( PPI )a year with no issues.

With your negative test, hopefully things will slowly improve. Give yourself some time

NanciT


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