Relapse Questions

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lunasdad
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Relapse Questions

Postby lunasdad » Thu Aug 08, 2019 11:23 am

All-

I am a 39 year old male and was diagnosed with CDIFF back in early July. At first I thought it was just IBS but the symptoms were much worse. I completed a 10 day course of Vanco (125 mg x 4) and have been taking Florostar. After completing the Vanco I felt much better but not 100%. Since this past Sunday the stomach pain, body aches, headache and WBM have all come back. I am not going 20 times a day, but I never had in the past, more like 4-5 times a day with urgency. My GI when I was first diagnosed gave me a home stool kit to keep in case this started again so I sent a specimen in this morning, will probably not get results until Monday. In the mean time both my ID and GI both want me to start the VANCO again (250mg x 4) for 14 days. I am really confused after reading some of the boards if I should wait for the results to take the meds or take them now. Also, I see that you can still be found CDIFF positive but not need to treat it. I trust my GI but my ID has not been helpful but tey are in agreement that I should take the meds. ANy one have similar experience and can provide some advice?

Thanks

Bobbie
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Re: Relapse Questions

Postby Bobbie » Thu Aug 08, 2019 12:14 pm

Another welcome to this site.

Tough question and one best answered by your docs as this is a support site -'not a medical advice site.

Have u heard of the three-day rule? I made it up many years ago. It is a "rule of thumb" that can be helpful.

The Three Day Rule: Don't be alarmed by mild symptoms unless you have three "bad" days in a row or if your symptoms become drastically worse. In this happens, call your doctor. Please remember, this is just a guideline to use when you panic after one or two bad days and think, "Oh, IT'S back." It doesn't always apply, but what does with C. diff. ? It's a variable and frustrating disease.

Keep posting.

jG43
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Re: Relapse Questions

Postby jG43 » Thu Aug 08, 2019 6:37 pm

I was in this same situation back in January. I was on vacation and was 8 days post vanco treatment. I had another round of vanco with me. I started having wd That progressed all day and into the night. I could not stay out of the bathroom for almost 12 hours. I went ahead and took the vanco. I am sorry you are going through this. You could try and tough it out while you are waiting for the test and start the meds if you seem to go downhill fast. But I am not a doctor and your doctors are the experts. No matter what you decide you will get past this. I had to have a fmt in March but it got rid of the c-diff. You will get better but it can be a tough recovery.

lunasdad
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Re: Relapse Questions

Postby lunasdad » Thu Aug 08, 2019 6:45 pm

I see that alot of folks on this site had FMT. MY GI doctor said that he would not do that until a 3rd relapse with a failed treatement of a 6-12 week Vanco Taper. Is that the normal course? If it is so effective why do they make us wait and suffer? I am struggling mentally because I have a family vacation leaving next weekend and then once I come back I have to fly cross country for a business trip. I have no idea how I am going to do this feeling this badly let alone get on an airplane for 6 hours. Did you experience fatigue and nausea while you were on the Vanco?

jG43
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Re: Relapse Questions

Postby jG43 » Thu Aug 08, 2019 8:16 pm

Unfortunately I was first put on flagyl by a wall in clinic. I think that was what cause my relapses. it wiped out too much of my good gut bacteria. I felt horrible with fatigue and
Nausea on it. I did much better on vanco. However I relapsed after a 10 day treatment then failed a 8 week vanco taper
Pulse. I was not able to get into a gi until I was halfway through the taper. My gi would have probably recommmended
a 10-14 day treatment of Dificid. Don’t think that you necessarily need a fmt. The taper works for many people. Unfortunately I relapsed on my 3rd treatment. That is when my doctor suggested 10 days of Dificid followed by fmt. If you are not handling the vanco you might see if your gi would let you switch to Dificid. The only drawback is Dificid is expensive without insurance.

jG43
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Re: Relapse Questions

Postby jG43 » Thu Aug 08, 2019 8:18 pm

Forgot to add that My gi said the standard of care was to do a fmt in mild cases after the 3rd relapse. He said
That he tries the least invasive method to achieve cure.

NanciT
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Re: Relapse Questions

Postby NanciT » Thu Aug 08, 2019 10:39 pm

jg

that is typical. Especially with recent info from FDA on FMt's. There are GI's and posters who have had more flexible GI's. I personally would ask for Dificid and do a 30 day taper. It has worked for many on the site.
In my case I had CDIFF in 2014/2015 ( 5 relapses) but the FDA nearly stopped FMT's at the time and the only GI I could find had a 4 month wait. I was on Dificid while waiting and when I finally got in, he had me complete that and all was well thankfully.

I know how frustrating the vacation thing is. Some go, other's cancel.

Wishing you the best

NanciT

lunasdad
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Re: Relapse Questions

Postby lunasdad » Fri Aug 09, 2019 10:45 am

Thanks for the response. Yesterday I only had one small bowel movement in the morning that was liquid. This morning after completing my 1st full day on Vanco, I had much stools when i woke up. I had a banana and a gutted bagel with a little jelly for breakfast and a little bit of Gatorade for breakfast. Right after I had a bout of watery diahrea. A lot of Mucus. I am really not sure what to think at this point. I think the Vanco is very harsh on my stomach but maybe its working. I just hate the thought of sitting around for 2 weeks hoping that this works only to be sick afterwards. I am so thankful for this support site and all of you. Although my wife and family are incredible it is noce to know there are people out there that have been thru it and are trying to help.

NanciT
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Re: Relapse Questions

Postby NanciT » Fri Aug 09, 2019 9:41 pm

It takes time for Vanco to work, if I recall in my case it was 3 days before I saw a change. I felt fairly good on Vanco other than nausea on and off which I wore "Sea Bands" for. I did relapse on Vanco and also a Vanco Taper but that came 2-3 weeks later.

You do need to give this time to work, I must say this illness takes some patience. Looks through the site and that will be clear, it can be a struggle. There are those who take one treatment and do great, hoping that is you! One thing I did was kept my diet bland, giving the gut time to recover.

Take Care
NanciT

lunasdad
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Re: Relapse Questions

Postby lunasdad » Mon Aug 12, 2019 8:46 pm

So my doctor just called me with my results. I tested positive for CDIFF. I am 5 days into the 14 day course of Vanco. 250 x 4 times a day. My GI doctor told me that in his experience there 30-40 percent chance it will relapse again and then I will need to do the taper and pulse Vanco. I asked if I could just skip the current course and do the taper and pulse, he said he would not recommend it but it is was my choice. My symptoms have not been so bad the last 2 days. I am barely going to the bathroom. My issue is that I do not want to finish this and then a few weeks later have to start over again. Wanted to get the group thoughts on this.

jG43
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Re: Relapse Questions

Postby jG43 » Mon Aug 12, 2019 10:52 pm

I get what you are saying but there is a good chance that the 14 day course will work. My gi would recommend exactly what yours is and my gi has had c-diff himself. Some people including myself have to resort to tapers and then a fmt but there are also a lot of people who recover after a 10-14 day regimen. It sucks and so frustrating that this Illness can cause a relapse. Try to take it one day at a time and eat healthy. Many have success by adding a probiotic such as florastor or drinking kefir to build the gut back up.

roy
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Re: Relapse Questions

Postby roy » Tue Aug 13, 2019 4:01 am

The aim is to cure c.diff with the least amount of meds possible.
Each extra day on meds causes more harm to the gut flora and that means it takes longer to recover.
It's a vicious circle.
A cure comes AFTER you finish meds and then it's a race between your good flora and c.diff to regrow and fill the space the meds created.
People that panic and take more meds (including those that treat just on a positive test) are much more likely to progress into a multi relapse disease.
Overtreating increases the relapse rate!

lunasdad
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Re: Relapse Questions

Postby lunasdad » Wed Aug 14, 2019 11:34 am

Question on how I am currently feeling. I am on Day 7 of the 14 Vanco treatment for the relapse. I have not had any WBM for several days, in fact I am barely going to the bathroom. However, today I have been feeling a lot of nausea and run down. <y legs feel like they weigh a ton. Also, I am wondering if there is any guidance on how many people suffer another relapse after a first relapse. My anxiety is thru the roof at this point and I am more than al little annoyed at how my doctors kind of brush it off as "Oh don't worry if it doesn't work we can just do along term Vanco taper". "you seem to be tolerating the Vanco well". I do not want to be on Vanco long term at all.

roy
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Re: Relapse Questions

Postby roy » Wed Aug 14, 2019 12:36 pm

First relapse rate is around 20% if vanco is used as the first med ( higher if flagyl is used and lower if dificid is used)
Of those needing a second round of meds around 40% go on to a second relapse.
Of that 40% over 60% go on to a third relapse and then an FMT is considered.
BUT that's in sick elderly patients.

A relapse is the return of full on watery D at least 3x a day for 3 days or more within 30 days of finishing treatment, NOT a positive test just to see if its gone or anything other than watery D.
Anything else can be normal recovery.

lunasdad
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Joined: Tue Jul 16, 2019 7:15 pm

Re: Relapse Questions

Postby lunasdad » Wed Aug 14, 2019 4:21 pm

While you were all on Vanco did you have weird narrow stools (sorry to be gross)? My BM's have been all over the place the last few days and I am trying to figurte out if its getting better or worse. Today I went normal twice, ate dinner and had an urgent WBM right after.
Last edited by lunasdad on Thu Aug 15, 2019 10:03 pm, edited 1 time in total.


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