Vanco after Dificid?

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Kr0d
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Vanco after Dificid?

Postby Kr0d » Wed Apr 24, 2019 12:29 pm

Hi everyone! I’m new here, 30/F (just turned 30 in March, and C.diff ruined my birthday, but anyway...) I’ll try to keep my backstory short. I had a laparoscopic appendectomy on March 14th, 2019...during my freaking vacation....and was diagnosed with C.diff by my primary doctor a few weeks later. I was initially given a round of Flagyl, and had a negative PCR afterwards, but tested positive again a week later.

For my second recurrence, I specifically asked my doctor for Dificid after doing some research, and she said she didn’t know anything about it, but approved after a quick internet search.

I finished the 10 days of Dificid on the 21st (200mg twice daily). I just got done with my follow up appointment and my doctor suggested the next thing to try would be a long dosing of Vancomycin (I assume this would be the taper dosing). I voiced concern with that since I’ve already taken Dificid, which seems to be the most effective medication, and asked if it’s possible to do it with Dificid....she didn’t know. Honestly, I feel like she is getting annoyed with all my questions, but I digress.

Anyway...right now I have a stool sample kit and a referred appointment with an ID doctor next week. But obviously, if my stool test comes back positive I will need to take something in the meantime. I’m really not sure that the C. Diff is gone..my bowel movements still look yellow and suspiciously “shredded” at times...although I have had some that were slightly more solid. No straight up watery D...but then again, I never really had that, maybe because I caught it early enough each time? At the beginning of the first diagnoses and my relapse, it was very loose, stringy and with a lot of mucous. It seems I’ve been somewhat lucky because I’ve been able to stay mostly functional during this whole ordeal.

So my questions are, should I go on the vanco if I have the positive test? Has anyone had experience with doing vanco after Dificid? Also, do you think it’s possible for C. Diff to be gone even though weird poops, gurgling and stomach pains are still present?

Thank you for any help!

NanciT
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Re: Vanco after Dificid?

Postby NanciT » Wed Apr 24, 2019 3:29 pm

Hello Welcome to the site, please read the first forum for all new posters

Generally people start off with Vanco due to the cost of Dificid and the fact that it can work. In your case, wait to see the ID. I relapse 5 times over a year and it was very clear it had returned. My symptoms were the same, I did not have alot of D ( 4 x/day) but felt very sick each time.

If you original symptoms have not returned, I would wait. We also did NOT test, coming off medication can give you false results, we went my symptoms.
I did end up with a Dificid taper because I did fail Flagyl 10 days, Vanco 10 days, Vanco 3 months, Dificid 10 days. In the end, the taper was the only things left ( this was 2014) and the FDA was halting FMT's at the time.

Seeing a ID is your best bet, you don't want to over treat. If symptoms return as they were before, call the ID.

Good luck, hopefully you will start to feel better

NanciT

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Wed Apr 24, 2019 5:56 pm

Hmm, well, I think if the symptoms come back I’m supposed to take a stool sample back into my primary doctor for testing. Of course, she wanted to test it immediately. I won’t really be able to call the ID doctor though because he has never seen me.

LHutz
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Re: Vanco after Dificid?

Postby LHutz » Wed Apr 24, 2019 6:58 pm

It sounds like your primary doc is not well versed on treating c. diff. Flagyl is no longer recommended as a first treatment option. And you can test positive for c. diff even after you no longer have an active c. diff infection. Because of this, doctors generally treat recurrences based on symptoms and not based on a positive test result. In other words, if you have a positive test result but no symptoms, doctors generally will not recommend any treatment. Doctors who are not familiar with treating c. diff sometimes over treat by prescribing another round of treatment based on a positive test result without symptoms. It’s good that your getting referred to an ID doc.

In terms of Vanco vs. Dificid, my understanding is that they are pretty equally effective at killing c. diff bacteria but Dificid kills less of the “good” gut bacteria so there is a lower recurrence rate with Dificid. However, that benefit may be negated since you took Flagyl first, which probably wiped out the good gut flora. So the ID doctor may recommend a Vanco taper if you get a recurrence. Talk to the ID doc about this.

After the active c. diff infection resolves your gut will need to go through a long healing process. Many people suffer from post-infection IBS, which can seem like C. Diff at times.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Wed Apr 24, 2019 11:07 pm

My doctor told me that she has treated it many times, but I’m also glad I’m getting referred to a specialist. I feel pretty icky tonight, so I’m honestly not going to be surprised if I get a positive test. The thing that makes this hard is that I won’t see the ID doctor for a week, but if C. Diff is going on, I can’t just ignore it. So if I end up getting it again, I should get the vanco, right? Or no? Ugh this is so frustrating...

AllisS
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Re: Vanco after Dificid?

Postby AllisS » Thu Apr 25, 2019 12:46 am

I think you should wait to see the ID doctor; a week isn't that long of a wait unless symptoms are severe and constant. A positive test and feeling "icky" aren't enough of a basis for starting vanco, IMO.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

beth22
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Re: Vanco after Dificid?

Postby beth22 » Thu Apr 25, 2019 1:19 am

If things get worse, I would ask your doctor for another RX for Dificid. I don't think taking vanco after Dificid is beneficial, but if you can, try to wait and talk to the ID first. If you do test, you might do it a few days before your appointment with the ID so that the results will be in by the time you go for the appointment.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Thu Apr 25, 2019 11:27 am

Alright, I’ll try to wait until it’s close to the appointment. Fingers crossed things will stay calm for me until then! Hopefully, if needed, my doctor will give me another script for Dificid. Thanks for the advice.

LHutz
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Re: Vanco after Dificid?

Postby LHutz » Thu Apr 25, 2019 5:53 pm

The general rule of thumb that doctors follow is no treatment unless you are experiencing at least 3 bouts of diarrhea a day for at least 3 consecutive days.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Mon Apr 29, 2019 5:36 pm

Hi all, just wanted to update. I felt really good for about a week, and today the d returned worse than ever. Between 5:30 am and 11:00 I had to visit the bathroom 7 times, and the stools went from pretty soft to straight up liquid throughout the day. Sorry for the TMI, but it also burns extremely badly when I wipe. :( I also currently have a low grade fever, which didn’t happen in the past.

As I suspected, I tested positive for C. Diff. My doctor was still going to prescribe the Vanco but I asked for Dificid again. She approved, but I’m nervous that my insurance won’t cover as much the second time or something. I really hope this new doctor can help me.

I can’t help but wonder if I caused this by not making wise diet choices in the past week. I’ve been careful with my hand washing and everything. Now I have to take even more time off of work, which makes me feel horrible. This is so depressing...

LHutz
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Re: Vanco after Dificid?

Postby LHutz » Mon Apr 29, 2019 8:08 pm

There are many things that can cause a low fever and diarrhea that are not c. diff. You finished treatment just 8 days ago, so you are almost guaranteed to test positive for c. diff even if you do not have an active infection. A positive test result does not mean that you have an active c. diff infection that requires treatment. With recurrences, doctors usually treat based on symptoms and not just a positive test result. As I said earlier, the guideline that most doctors follow is not to treat unless the patient has experienced a minimum of 3 bouts of D per day for 3 consecutive days.

Many of us who recovered from c. diff have bad days for many months after finishing treatment. The infection causes a lot of damage to the GI tract and the antibiotics used to treat the infection are very harsh. It takes a long time to heal from all that damage. There are many days where we feel icky in recovery and have unexplained bouts of D, GI pain, gas, bloating, etc. I finished treatment 4 months ago and still have bad days but they're much less frequent than they were in the beginning of my recovery.

Since you have an appointment with the ID specialist coming up very soon, I'd try to hold off on treatment until you see the ID specialist if I was in your shoes.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Tue Apr 30, 2019 9:27 am

Fair enough...I just can’t imagine this not being c.diff. It’s got the same color and horrible smell as before. I could try to wait things out until Wednesday, but what can I do about the diarrhea until then? Does anyone have suggestions? It’s getting more liquid by the hour. I need to have that under control and have things firmed up by Friday so I can return to work. I’ve already taken way too much sick time because of all this. :(

roy
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Re: Vanco after Dificid?

Postby roy » Tue Apr 30, 2019 11:43 am

3 day thing is only when symptoms are mild.
If you go down hill fast then it's most likely a relapse that's going to need another round of treatment.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Tue Apr 30, 2019 12:10 pm

Well, I do have another 10 day supply of Dificid waiting for me at the pharmacy. Now I just can’t decide whether or not I should take it. Nothing has eased up from yesterday except that I don’t have a fever currently.

Kr0d
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Re: Vanco after Dificid?

Postby Kr0d » Wed May 01, 2019 3:23 am

Currently about 2:30 am...just had a bout of D and my stomach feels so horrible...also having some lower back pain. I didn’t end up taking the Dificid yesterday. I just don’t know how I’m even going to make it in the doctors office...I have to be there at 2:15 for my 2:45 appointment...I can’t imagine I’ll be able to avoid needing the toilet during that time. I just don’t knoe what to do right now


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