Third try on vanco...

Please limit your post to questions only. You can ask multiple questions in the post. (One post per person per day about yourself. See exception in General C. diff.Discussion.)
Amb66
New User
Posts: 25
Joined: Tue Nov 07, 2017 1:56 pm

Third try on vanco...

Postby Amb66 » Thu Jan 25, 2018 10:12 am

Hey everyone I’m back. Just heard back from my dr and it Turns out the C Diff has returned again. I’ve been battling this beast since October and I’m ready to be done. My GI I’m using is the one assigned to me in the hospital when this all started. I’ve never had an office visit with him but when they called with the test results they said he wanted to schedule one. Is that normal? I’m just not sure what else he could want when he already has the positive stool sample, unless it’s just to talk? It just has me on edge (more than I already am). I’m getting started on a 6 week vanco prescription this time so hopefully that’s enough to kick this once and for all.

Also, is there something I’m doing to relapse? I’m constantly washing my hands, bleaching the bathroom so idk what more I can do but I don’t want all of this to be my fault either if I could’ve done more.

Thanks so much for all of your help!
Xoxo

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Third try on vanco...

Postby NanciT » Thu Jan 25, 2018 10:43 am

How long were you off Vanco before it returned? If you were in the hospital and this GI was taking care of you, yes there should have been a follow up especially if treatment continues.
There should always been one and I would keep the appointment.
You mention it has returned, how many days have you had symptoms? If this is a relapse I would ask for a DIFICID TAPER and not Vanco for a 3rd time.

Most GI's don't test, they go on symptoms and exam, that is why they need to see you
If the visit is far off, I would call and move it up. Let them know you want to discuss Vanco and trying another medication.
Wishing you the best
NanciT

Amb66
New User
Posts: 25
Joined: Tue Nov 07, 2017 1:56 pm

Re: Third try on vanco...

Postby Amb66 » Thu Jan 25, 2018 10:52 am

Hi Nanci, I was off vanco for 4 weeks before it returned. I was feeling incredible so I truly thought I had beat this thing. Since then I’ve had symptoms for about a week which progressively got worse. My appointment is on Monday but for some reason my GI always has me test. Perhaps because I haven’t had an in office with him yet? May I ask what you think they would look for during an exam? Going off symptoms makes total sense to me but I’m curious what else they would look for during an exam since the only way to know for sure is to test. I’ll certainly ask about dificid when I see him. Is it okay to start on vanco for the weekend until I see him Monday do you think? Thank you so much for your help!

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Third try on vanco...

Postby NanciT » Thu Jan 25, 2018 11:10 am

Generally exam will consist of vitals and feeling abdomen if you are having abdominal pain, a face to face visit is important if this GI has not seen you since a hospital visit. They should also review any meds you are on, allergies to meds and your current symptoms. Sometimes they wont exam at all, just detailed history.
Its up to you if you can get through by phone, you need to be on medication so either way I would start one but I would push for Dificid, they often go to Vanco due to cost. If this is the 3rd time, I would go in with ALL information on Dificid on Monday. Put it in the search bar and read all about it, so many of us have failed Vanco( I failed a 3 month taper) and had to insist on Dificid. Also look under CDI for more information
NanciT

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Third try on vanco...

Postby Bobbie » Thu Jan 25, 2018 8:17 pm

Twice I made it to six weeks on Vanco before I relapsed. At that time flagyl and Vanco were the main meds against c diff.

I agree with Nanci and would ask for Dificid, if cost is a problem, contact the drug manufacturer. Sometimes they offer financial help.

Dificid was geared specificallys to work against c diff. Some do have problems with side effects, however.

Best of luck.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Third try on vanco...

Postby georgina » Fri Jan 26, 2018 1:04 am

I can relate to the tremendous frustration since I too am one of those patients that had relapses when I thought I'm out of the red zone , every time I've relapsed it happened after a month of recovery. Don't blame yourself for the relapses , you are not doing anything wrong ,this happens because Cdiff is a relapsing disease , because spores are not killed and they keep hatching and grow on the gaps that are not filled with good bacteria. Nancy gave you good advice about asking for Dificid. Dificid is made to target only clostridia , and unlike Vanco it doesn't touch the rest of the good flora so they can do their jobs , also it has the ability to stop the sporing process another thing that is not possible with the other drugs (stops Cdiff to hide into spore form when it feels the threat of the antibiotic) so as you can see Dificid is superior to Vanco in SO MANY WAYS.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: Third try on vanco...

Postby MKW » Fri Jan 26, 2018 2:14 pm

Hi, I wanted to add also I relapsed twice a month after stopping meds. The second time it was almost 5 weeks. Really psychologically hard! I finally had an FMT in March of 2017. I never did try Dificid though, and have read of many posters on here it has worked for after Vanco failed. It supposedly does hinder the sporulation process, and spare more of your good bacteria. ... side note- there is a drug called Ridinilazole in stage three trial that would be a narrow spectrum FiRST LINE treatment. I pray for the day. If only we were given Dificid with our first occurrence, I believe many of us would never end up in this nightmare.


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: No registered users and 20 guests