Will anything ever work?!

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.)
MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Will anything ever work?!

Postby MrsM25 » Mon Dec 04, 2017 5:17 pm

Hello, I am a 29 yo female and I have been battling cdiff with several relapses since the middle of October. I started with flagyl and then was switched to vanco 125mg 4x a day for 10 days at day 9 on the flagyl because I wasn’t improving. After the 10 day course, I relapsed at day 6 off of vanco. I was put on another 10 day course of vanco 125mg 4x a day for another 10 days and again I relapsed only 3 days off of vanco this time. I was just put BACK on vanco again, this time at 250mg 4x a day for 28 days. I asked about taper and the GI said that he hasn’t found that to be any more or less effective then just the prolonged dose of vanco. I am currently scheduled for colonoscopy on 2/2/18 and was told that if I continue to relapse, the doctor will do FMT via colonoscopy at that time. I questioned dificid and my GI said no and he wants me to stay on vanco. He also said he will not move FMT up at all so if I relapse again, I’m sure he will put me back on vanco again. Somebody please give me some hope here. This feels never ending, will it ever go away?!

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Will anything ever work?!

Postby amg » Mon Dec 04, 2017 5:32 pm

Why in the world would he say no to Dificid? You've failed vanco already. Is he familiar with Dificid? That the relapse rate is lower with it compared with Flagyl and Vanco? That it spares your good gut bacteria more than vanco? That it inhibits toxin formation? That it also works against spores?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3926343/

Here's a recent paper outlining how Dificid is superior to vanco in Canadian patients:

https://www.hindawi.com/journals/cjidmm/2016/8048757/

Dificid with a taper cured my daughter after 4 relapses, 2 after Flagyl and 2 after Vanco. It spared her having to undergo a procedure that carries its own risks. (Yes, a colonoscopy is not without risks) And though FMT is a godsend to those who have no other options, we still can't predict the outcome and don't know all the possible the long term effects. If you can be cured by Dificid, why not spare yourself the procedure? Note, if Dificid hadn't cured my daughter, we would have gone through FMT, but it was a last resort for us.
Last edited by amg on Mon Dec 04, 2017 5:40 pm, edited 1 time in total.

MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Re: Will anything ever work?!

Postby MrsM25 » Mon Dec 04, 2017 5:36 pm

He said that there “isn’t enough literature” to support switching to dificid. Insert crying face :( this feels hopeless

Ygy
New User
Posts: 20
Joined: Sat Dec 02, 2017 8:25 pm

Re: Will anything ever work?!

Postby Ygy » Mon Dec 04, 2017 5:37 pm

Hi,

I'm so sorry you're going through this. I'm also young and healthy women at 31 years old. I initisllly took a 14 day dose of Vanco and then relapsed 10 days later. I was put on a 6 week Vanco taper and at 4 weeks I was not back to normal yet so I asked for Dificid.

I'm currently 14 days post dificid. I went back to normal on day 2 of dificid. Could eat whatever, stools returned to normal. Prayerfully I won't relapse.

I'm not sure why your GI says no dificid or no taper. I would say consult an infectious disease doctor or get a 2nd option from another GI. Definitely keep the appt for FMT though.

Best of luck and I'll say a prayer for you!

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Will anything ever work?!

Postby amg » Mon Dec 04, 2017 5:43 pm

If I were you I would actually bring in those papers I linked to you, along with the one of treating multiple recurrences with a Dificid taper.

Here's that one:

https://academic.oup.com/ofid/article/1 ... 69/1467363

There is PLENTY of literature now.

Here's one that shows the superiority of Dificid compared with Flagyl and vanco in a gut model:

https://www.ncbi.nlm.nih.gov/pubmed/24003182

MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Re: Will anything ever work?!

Postby MrsM25 » Mon Dec 04, 2017 7:22 pm

Seems like maybe I’d have better luck trying to see an ID doctor rather then trying to convince the GI doc of anything. I don’t really want to switch GI’s because there are few who do FMT and he is one. I wonder what the wait is for an ID doc. Maybe I’ll call tomorrow just to see.

NanciT
Long Time Contributor
Posts: 2388
Joined: Thu Sep 18, 2014 12:01 pm

Re: Will anything ever work?!

Postby NanciT » Mon Dec 04, 2017 7:33 pm

I would print out everything amg listed and bring it in to see the ID or another GI. To be honest, there are a lot of GI's that do not use Dificid, often what I have found it is the cost or the battle they will have with the insurance company.

I really do feel for you, when you are sick we want to trust in our physician's but sadly I have seen this over and over again. I had my own battle with 2 GI's during my CDIFF nightmare of relapse after relapse. It's terrible when you are so ill and cannot count on them.

Call the ID's office and ask to speak with the nurse, maybe you can get through and she can move the apt up.

Sorry you are going through all of this

NanciT

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Will anything ever work?!

Postby amg » Mon Dec 04, 2017 9:36 pm

What I don't understand is that purposely avoiding Dificid due to cost is so shortsighted. Colonoscopy FMT's probably cost more. An average colonoscopy costs around $3000. An ER visit certainly costs more. A hospital admission no doubt costs more. And missed days of work etc cost society, too.

My suspicion is that a lot of docs just aren't familiar with Dificid. I certainly wasn't until I came to this site.

MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Re: Will anything ever work?!

Postby MrsM25 » Mon Dec 04, 2017 10:32 pm

The irritating thing is that I already called my insurance company and dificid is covered. It’s expensive but still covered. I already printed the coupon off their website to make it cheaper so I’m willing to pay whatever the leftover is. I really get the feeling like he just doesn’t know about it much but he doesn’t seem too interested in hearing my thoughts on it. It’s hard because he really is a good doctor and he’s smart but like you said, when you are this sick and are relapsing so often, you just want to cut out the BS and go to what has a good chance of working for you. Vanco just doesn’t seem to be working for me.

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Will anything ever work?!

Postby amg » Mon Dec 04, 2017 10:38 pm

Maybe you can call the office again tomorrow and tell them you're just not feeling much better on the vanco and can you please have Dificid. :) You know what they say about the squeaky wheel.

MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Re: Will anything ever work?!

Postby MrsM25 » Mon Dec 04, 2017 10:45 pm

LOL! They are suppose to call me again tomorrow anyway because I gave the nurse another list of questions to ask the doctor for me again and he is in the office tomorrow so I’m sure he is going to roll his eyes. But hey, we have to be our own advocates, right?

amg
Regular Contributor
Posts: 271
Joined: Sat Oct 01, 2016 3:16 pm

Re: Will anything ever work?!

Postby amg » Mon Dec 04, 2017 10:49 pm

Yes, we do!! Better he rolls his eyes than you continue to not feel well.

georgina
Long Time Contributor
Posts: 2174
Joined: Sat Sep 12, 2015 10:07 am

Re: Will anything ever work?!

Postby georgina » Tue Dec 05, 2017 1:27 am

Another doctor that thinks "he's all that , knows it all". I really do not understand why he will keep you on the Vanco train if you are able to get the Dificid. If I were you I would go get a second medical opinion.

MrsM25
Regular Contributor
Posts: 133
Joined: Fri Nov 17, 2017 4:41 pm

Re: Will anything ever work?!

Postby MrsM25 » Tue Dec 05, 2017 8:50 am

I found a number for the ID doctor in the network that all of my current doctors are in. I will call them when they open just to see what kind of wait time there is to get in.

roy
Long Time Contributor
Posts: 3165
Joined: Sat Aug 02, 2014 1:05 am

Re: Will anything ever work?!

Postby roy » Tue Dec 05, 2017 9:03 am

You jumped into your current course of treatment very fast and with very little in the way of c.diff symptoms.
It's far from certain that you were relapsing.
When you finish meds it's fairly normal to have off days for quite a while, your good flora has to regrow and overcome any c.diff that is still there in a spore condition.
Each time you take another course of meds it's like hitting the gut flora reset button and the process has to start again AFTER you finish the course.
Final recovery and cure only happens AFTER you come off meds and your gut flora recovers.


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: No registered users and 3 guests