Going off vanco after 10 month treatment

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Zapper
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Going off vanco after 10 month treatment

Postby Zapper » Tue Jan 17, 2017 7:50 pm

Hello again,
28 yr old female with c diff diagnosis 11/2015 with 4 relaspses.

It has been quite some time since I've been on the forum as last time I posted I found out I wa pregnant and my ID doc ordered a tapered low dose (2 250 vancomycin pills a day) for my entire pregnancy.
((I had already relapsed 4 times and my next step was an FMT but pregnancy made that too risky))
Anyway, I've been feeling great with my 2 pills a day and now it's time to stop treatment to see if the infection has cleared or if I will need the FMT after all. The anxiety and dread has already started to kick in. All my relapses have come quickly and without any warning. I've been hospitalized all 4 times due to severe dehydration and now with my newborn son I am very scared about relapse as I am his main caretaker. I did buy coconut oil and oil of oregano pills to help the transition, but for some reason it isn't giving me any peace of mind.
I will update as the weeks go on. The longest relapse took 12 days on my 4th relapse so hopefully if I can make it past that I will be in the clear.
Scary to have to think about this all again. There are days I wish this wasn't my life and having to fear c diff relapse or reinfection at my age, but life goes on for now. Just needed to vent and posting in hopes that there was someone else in a similar position with an extended low dose treatment that could tell me about their experience!

roy
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Re: Going off vanco after 10 month treatment

Postby roy » Tue Jan 17, 2017 7:55 pm

That's a normal dose not a low dose!!

Ask your Dr if you can actually taper off gradually.
2 x 125 a day then 1x 125 for example.
That's what I would ask for.

Repeat.
That's not a low dose!

Zapper
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Re: Going off vanco after 10 month treatment

Postby Zapper » Tue Jan 17, 2017 8:12 pm

Wow I didn't realize. My last dosage was 4 250 pills a day. The way he explained it was that it was a low dose that was safe for my pregnancy and to ensure a relapse. Unfortunately for me, this doctor does not want to advise me on a change over the phone. Appointments take a few weeks and I don't have enough pills to get by.

Bobbie
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Re: Going off vanco after 10 month treatment

Postby Bobbie » Wed Jan 18, 2017 2:14 am

See CDI. - Tapering and Pulsing viewtopic.php?f=4&t=659#p4770

These methods have helped some on this site including two of our moderators. Run them by your docs.

Congrats on the new baby.

maxny1
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Re: Going off vanco after 10 month treatment

Postby maxny1 » Wed Jan 18, 2017 11:25 am

I hope you are able to fully enjoy the little one in spite of CDI. Sounds like you've had an awfully rough road with this.

Vanco pulse dosing seems to be working well for me so far, knock on wood. Still just 1 or 2 BM's per day, mostly formed, and my weight is back up to normal.

My regimen this time is 3 weeks of 4x125mg = 500 mg/day, then 2 weeks of 375mg all at once every 3 days, then 2 weeks of 275mg every 3 days, then 2 weeks of 125mg every 3 days.

I like the idea of pulse dosing, because in theory it gives more time for the "good" flora to regenerate, with 72 hours of no Vanco in between pulses, while still killing any CD spores as they generate, as opposed to just tapering off with a continued daily dose which might hamper the good flora too much. Just my speculation though.

Zapper
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Re: Going off vanco after 10 month treatment

Postby Zapper » Fri Jan 20, 2017 12:22 pm

Update:
I spoke with my doctor and agreed to provide a new prescription to "pulse" I'll be taking 2 125 daily for 2 weeks then 1 125 for 1 week then 125 every 2 days. I also purchased a strong probiotic to add to my oil of oregano and coconut oil.
I'm nervous but hopeful that I will finally kick it this time. My husband is worried- overwhelmed with the newborn and terrified I will end up back in the hospital again. Just have to take this day by day.
I'm still very skeptical of my ID MD. He says probiotics and herbal remedies don't help the issue. But he has the best reviews in the community for c Diff infections and has close ties with a gastroenterologist that performs FMTs.
Thank you so much for the guidance.
I will update if any relapses occur.

maxny1
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Re: Going off vanco after 10 month treatment

Postby maxny1 » Sat Jan 21, 2017 2:49 pm

Good luck. One recent study found Vanco Pulse to have as good a 90-day success rate as FMT. It's helped many people here. I'm halfway thru my 6 weeks of pulse and all is still well.

As for you Dr's skepticism, it is partly warranted in that Vanco, Dificid, and (experimentally) FMT are the only FDA-approved treatments for CDI.

Many ID/GI docs recommend probiotics or kefir because some studies have shown promise enough to convince them it's worth recommending- but other studies have shown no benefits. Part of the problem might be the lack of regulation/standardization of non-pharmaceuticals, and the many different strains out there. Even the hopeful studies or metastudies I've found often don't specify which strains in what dosage were used.

More research needs to be done in the form of rigorous, controlled studies, but the problem is the money isn't there unless the payoff is a patentable, pricey drug like Dificid/Fidaxomicin.

Bobbie
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Re: Going off vanco after 10 month treatment

Postby Bobbie » Mon Jan 23, 2017 3:06 am

Maxny1',
You are so right! Best of luck.

Zapper
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Re: Going off vanco after 10 month treatment

Postby Zapper » Mon Mar 13, 2017 3:55 pm

Just wanted to update that a relapse did occur.
Awaiting call back from my doc to start the plans for my first FMT.

Benh
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Re: Going off vanco after 10 month treatment

Postby Benh » Tue Mar 14, 2017 11:04 am

I'm sorry to hear that you have relapsed after the taper. That is disappointing to say the least. I hope the fmt works and you get it gets done quickly. Good luck.

georgina
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Re: Going off vanco after 10 month treatment

Postby georgina » Wed Mar 15, 2017 12:57 am

Sorry you relapsed . Have your tried tapering Dificid? A long taper of Dificid might cure you. FMT is also a great idea , do you have a good donor?

Zapper
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Re: Going off vanco after 10 month treatment

Postby Zapper » Fri Mar 17, 2017 8:50 am

Georgina,
I do not have a donor. Donor bank is closed until June so I will be taking vanco until then. My appt w/ my GI is next week. I plan on asking about dificid as well

roy
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Re: Going off vanco after 10 month treatment

Postby roy » Fri Mar 17, 2017 1:53 pm

Is that openbiome?
I know they have suspended oral casuals but I thought colonoscopy material was still being supplied.

Zapper
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Posts: 221
Joined: Thu Feb 11, 2016 10:28 am

Re: Going off vanco after 10 month treatment

Postby Zapper » Thu Apr 20, 2017 6:35 pm

Roy,
Yes it was just the capsules. They misinformed me over the phone. My FMT is scheduled for 4/28. I'm dreading colon prep. 3rd one in 3 years.
This time it seems a little extended.. directed to stop all solid food 48 hours prior to FMT colon prep with prepopik at 10pm then again at 10am for a 4pm procedure. Does this seem right? All my other preps have been done in a 12 hr timeframe.


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