Having my first relapse

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MrsM25
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Having my first relapse

Postby MrsM25 » Fri Nov 17, 2017 4:57 pm

Hello! My name is Ashley and I am a 29 year old female. I was diagnosed with the dreaded C-Diff about a month ago due to overuse of antibiotics for several things but mostly recurrent UTI's. I was initially placed on Flagyl 3x a day for 14 days by the urgent care who diagnosed me. After my diagnosis however, I decided to schedule an appointment with my GI for a follow up since I didn't really want to rely on my urgent care in case of relapse. So, I saw my GI on day 9 of my Flagyl treatment and at that point my GI decided it would be best for me to stop the Flagyl and immediately begin Vancomycin 125mg 4x a day for 10 days. He felt that Flagyl isn't the best course of treatment anymore and he thought I would probably relapse on the Flagyl and have to take vancomycin anyway. This brings me to today. I finished my vanco treatment exactly one week ago and all was going well and then suddenly, major cramping and D returned all at once yesterday morning as well as a fever. I called the GI and they made me do a stool test which came back positive this morning. So, the GI called in another 10 day course of vancomycin 125mg 4x a day. He also told me that if the vanco fails this time, he will do FMT.

So, I guess my question is, how many have relapsed on vanco and then were cured by a second course (fingers crossed)? Also, is relapse this quickly a bad sign that a second round of vanco may not do the trick? Feeling hopeless. I've got a 4 year old a 1 year old who need their mom back and healthy!!

Thanks for all the information on this site by the way! It's been so helpful and informative and gives me a glimmer of hope!

amg
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Re: Having my first relapse

Postby amg » Fri Nov 17, 2017 6:34 pm

Hi Ashley,

So sorry you're going through this with two young children to take care of!

I'm not one who places a lot of faith in treating relapsing c diff with the same exact thing again. It certainly didn't work for my daughter. Once someone starts relapsing, their risk of subsequent relapses goes up. And I'm curious why he's jumping so quickly to FMT before you've even tried a vancomycin taper or, even better, a DIFICID taper. A Dificid taper is what cured my daughter (1 year ago yesterday she took her last Dificid pill) after she relapsed twice on Flagyl and twice on Vanco. Dificid targets the c diff more closely, sparing your good gut bacteria, and it works against the c diff spores, too.

The course that worked for my daughter was 1 Dificid twice a day for 14 days, 1 Dificid once a day for 14 days, then 1 Dificid every other day for 7 more pills. She had already seen the GI specialist who was ready to schedule her FMT, but the Dificid worked! And I was very grateful to not have to put her through the procedure (which has risks) as well as taking donor stool into her system, which I don't think we really know what the long term effects might be. BUT, if FMT is one's only option, then thank God we have that option. And I know there have been many for whom FMT worked when all else failed. I just think you have a few more medicine options you and your doctor can consider before going to FMT.

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Fri Nov 17, 2017 8:03 pm

Hi amg! Thanks for your response!

I'm so glad that your daughter was finally treated successfully for this ugly thing! I myself was a bit curious why he didn't atleast try to do a vanco taper this time. I mentioned it while speaking with his nurse on the phone today but I don't think she even probably relayed the message to him. I was unable to speak to him in person because his nurse was the one who called me with the results of my stool test from yesterday and gave me the instructions and called in my new prescription for the vanco. It's so hard too because you don't want to argue when you are feeling so terrible. I wonder if maybe I can see how my course of vanco goes this week and then possibly call and ask about a tapering option before going directly to FMT? I'm just so scared of relapsing again on the same dose!

NanciT
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Re: Having my first relapse

Postby NanciT » Fri Nov 17, 2017 8:18 pm

Hello and Welcome to the site Please read the first thread for all new posters

I also wonder about being put on the exact same treatment. I went from Flagyl, to Vanco, to a 3 month Vanco taper. Unfortunately, Vanco did not work for me and caused me bladder irritation. I agree with AMG, why not call and ask about a Dificid taper. My case is a bit different because it was in 2014 and very difficult to find a GI to do an FMT. I went on a Difcid taper while waiting to see the only GI I could find to do the FMT. He had me complete the taper and thankfully that took care of it.
I understand not wanting to question your GI, but I think it's worth a call. Take a look at the information under CDI.
I hope you feel better soon, I know how scary and frustrating this can be
NanciT

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Fri Nov 17, 2017 8:26 pm

Hi NanciT! Thanks for your response!

Maybe I will call my insurance and see what my copay would be for Dificid. I did see there is a coupon on the manufacturer website for it. I have pretty good insurance I believe. I've seen others have to pay a load of money for vanco but my copay was only $15 for the vanco capsules. Then I could try to call on Monday when they are open again just to ask about some kind of taper? I'm just so scared of relapsing again and I felt way more sick this relapse then I did when I was originally diagnosed.

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Fri Nov 17, 2017 9:11 pm

So, I was able to call my insurance company to find out about coverage for dificid. I gave the scenario amg gave with the taper which I figured out to be it looks like 49 pills. They said with my coverage it would cost I think $850 or something close to that. I went on dificid.com and printed off the coupon that they allow you to use up to 4 times to reduce your copay. It says with your insurance coverage and the coupon together, your copay could be as low as $50. So, I guess I will call my GI on Monday or maybe stop in there to talk to them because I am scheduled for a urology appointment in the same building on Monday and just ask about maybe a different option to try? I'm just so concerned that I am going to go through this round of vanco and end up in the same place again.

amg
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Re: Having my first relapse

Postby amg » Fri Nov 17, 2017 11:14 pm

One of your other options is to do a Dificid "chaser" right after the regular course of Vanco. That is described in the same paper I used to convince our ID doc to give my daughter the Dificid taper.

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

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Fri Nov 17, 2017 11:39 pm

Very interesting amg. I just read through this and bookmarked it to my phone so I can refer back to it. I definitely think I will call my GI on Monday just to see if he would be open to trying something like this before going through with the FMT if this vanco course fails. Thank you for the info! I just feel like I don't have much faith that this vanco course will work since it failed once but hoping I'm wrong. But maybe he will do something like the taper or a chaser directly after the vanco course. I need hope that I will soon be on my way to recovery. I would rather go through labor again then deal with this cdiff business!!

Mindy
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Re: Having my first relapse

Postby Mindy » Sat Nov 18, 2017 7:09 am

I myself am VERY grateful I had an FMT by colonoscopy, followed by frozen pills. That was 29 months ago, but who is counting. I had lost 35 pounds in 10 weeks, too weak to walk hardly. I know people are afraid of FMT, but wiping out your good flora over and over with rounds of antibiotics, which for me failed, scared me too. I know at my new GI guy since I moved to another state, says, he doesn't waste time anymore, and as soon as people fail, he has them get FMT. He feels it saves the Colon from problems related to ongoing infection.

That's my experience, everyone is different. Good luck with your treatment.

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Sat Nov 18, 2017 10:02 am

Hi Mindy! It is so good to hear that your FMT did the trick for you! Believe me, I am soooo very thankful that my doctor does FMT. I think it's ultimately going to be my cure all in the end if all else fails so I am certainly willing to do it. I think my question really was if anyone has seen success from a second round of vanco at the same dosage and time frame. I'm just thinking in the back of my mind that I'm set up for failure again with this vanco course since it is the exact same one I relapsed on. I'm just wondering why he didn't try a taper or something this time. Hoping for a miracle here!! My doctor hasn't really explained the FMT process to me yet although I do know he does it by colonoscopy like yours was done. I don't know if he does the pills at all. Mindy, were you asked to do a course of antibiotics prior to the FMT or did they just do it while you were in active cdiff? Thanks everyone, this is all so helpful

Mindy
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Re: Having my first relapse

Postby Mindy » Sat Nov 18, 2017 10:37 pm

The doctor extended my Vanco out until two days prior to the FMT. Don't get me wrong, it's taken a long time to get where I'm at, and I just accepted my system will never be the same as prior. However, I truly believe I may not have made it I was failing so fast. I know some on here do not believe in the pills because of SIBO, but I think the double whammy helped me. I did not suffer from SIBO.

Good Luck.

Bobbie
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Re: Having my first relapse

Postby Bobbie » Sun Nov 19, 2017 12:33 am

Good luck to you, Mindy. Hang in there,

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Sun Nov 19, 2017 10:30 am

Thank for the info Mindy! I guess the doctor will probably give me more information on how he does FMT if it comes to that. I already have a colonoscopy scheduled for the middle of January but he said if I relapse again he would switch that colonoscopy to FMT. I was just concerned that if I relapse again, especially as quickly as I did the first time, that leaves me with a month gap until the FMT would be done. I figured they would have to give some sort of coverage in the meantime. I am so ready for this to be over. I'm sure everyone on here feels the same way. I am prepared to have a rough recovery ahead, just hoping to get over the initial cdiff infection sooner rather than later. It makes it even more distressing that this is all falling over the holidays. I feel like I have so many commitments with the holidays for gatherings and parties and such and the unknown with cdiff stresses me out so much. Again, thank you all for your kind words and information. It really is helpful!

By the way, I am on day 3 of my second Vanco course and feeling much better again. I finish my course on Sunday. I will update as I go.

MrsM25
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Re: Having my first relapse

Postby MrsM25 » Tue Nov 21, 2017 7:51 pm

Five days into second vanco course, five more to go. Feeling good but I don’t want to jinx it. Haven’t had any mad dashes to the bathroom since starting back on the vanco and have pretty much only been going to the bathroom once, maybe twice a day. I no longer have D although it is still soft but trying to be more formed. So terrified of relapsing again after this. Trying to stay positive and hoping for the best. My family and friends talked me into not questioning the doctor on the medication decisions. So, I guess it’s a wait and see now and if this course fails then I will be looking at doing FMT. Will update as I go. Anyone have any suggestions on what and what not to eat within reason since thanksgiving is in 2 days. I’ve been eating a pretty bland diet and have been doing well with that. I don’t know if I can try to eat a cookie or something at thanksgiving dinner or if I should stick to just the basics (mashed potatoes, turkey, etc.). I’ve been avoiding coffee all together which is the worst since I was a 2-3 cup a day kind of girl before all of this!

I hope everyone has a Happy Thanksgiving!

Nancy1
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Re: Having my first relapse

Postby Nancy1 » Tue Nov 21, 2017 10:28 pm

I remember my Thanksgiving with cdiff. Everyone else was having turkey with all the trimmings. I had a banana and a piece of toast. I still had an appetite so I felt very sorry for myself. And even after being so careful, I ended up in the ER the next day.

So I wish you and everyone here a better Thanksgiving than that.


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