Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day?

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.)
Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day?

Postby Machaon » Wed Jul 12, 2017 3:04 pm

I realize that everyone is different and suffers different levels of severity and symptoms, so I do not expect responses that will definitively answer my questions. But I am hoping to learn a little more about increased (or not) symptoms while tapering/pulsing.

I took four vancomycin per day for 10 days. Today started day four of two per day, 5am & 5pm. I feel more energy and more strength, and notice a significant improvement in my leg strength and swelling from reducing vancomycin. So... the vancomycin was effecting my energy, strength and leg/ankle/foot bloating.

I have had decent bms for these four days. Somewhat soft but formed, and no sign of diarrhea.

I think that I may be near the time when the reduction in vancomycin may start causing an increase in unpleasant symptoms.

Those who have "successfully" done vancomycin tapering/pulsing; did you experience an increase in uncomfortable or negative symptoms during the reduction to 2x per day? What about when you went to 1x per day? How about 1x every other day?

Has anyone gone thru the whole gamut of tapering/pulsing without any increase in symptoms?
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

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

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby NanciT » Wed Jul 12, 2017 6:18 pm

I think you will find everyone's experience is different.

I did use a Vanco Pulse/taper for 3 months, while on it I had other symptoms but BM's were fine the entire 3 months. I had a lot of nausea and bladder irritation near the end of the 3 months. In my case all seemed well for a few weeks after I was done, then I relapsed.

NanciT

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Wed Jul 12, 2017 8:20 pm

NanciT, that had to be incredibly sad and disappointing! I can't imagine how you were able to cope with such a tapering failure. It breaks my heart!

It also makes me wonder if I'll experience the same negative result. Good bms are not necessarily a sign of successfully tapering! :(

I see that you were eventually cured by a Dificid taper. I'm glad that you found a cure! Nice!

If you don't mind, what were the symptoms that you suffered during the vancomycin tapering? We're your symptoms different during the Dificid tapering?
Last edited by Machaon on Wed Jul 12, 2017 9:32 pm, edited 2 times in total.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

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

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby NanciT » Wed Jul 12, 2017 9:30 pm

I had very few symptoms with the Vanco tapering other then nausea. The bladder irritation came as I got off it. I then went for weeks fine. I don't recall how many weeks and the severe D started. I was put on Dificid for 10 days, no issues at all on that. A few weeks later, it hit me hard again with D and I also had vomiting each time I relapsed My GI was at a loss, this was 2014 and I was on a 4 month wait list to the see the only GI around here that did FMT's. I did my own research and found a paper and convinced my GI to start the DIficid taper which was 3 months. I was lucky my insurance covered it ( I think it was under the radar at the time).
I did not feel well at all on the Dificid taper. I had a lot of stomach pain, BM's were not consistent and I felt ill the entire time. It has been a long recovery. I did see the GI that does FMT but he felt I should continue with the taper ( I had 4 wks left) and we would do it if it came back. Thankfully it did not. I am so very grateful for that.

Please don't think this will be your experience. One of the reasons I have stayed on this site is to tell people, find the best GI or ID you can and come up with a plan if you have a reoccurrence. There is a great deal of experience on this site and find that best most experienced doctor is important. Under CDI some have posted their Taper's. I have not because it was a research paper and I believe it has made my recovery much longer.

Finish your taper and hopefully each day you will feel better. It has worked for many, give it some time.

NanciT

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Wed Jul 12, 2017 10:08 pm

In my case, I don't suffer from nausea. In fact I have a robust appetite and enjoy three large salads every day.

I can see by your Dificid side effects that the level of miserable symptoms, or lack of symptoms, doesn't necessarily reflect success of the taper. I am disappointed that there may not be a link between success and symptoms during a taper! For instance, if I maintain a robust appetite throughout the taper, would that predict success? What if robust appetite and good bms, in the event that happens during my taper?

I have read the tapering posts and find it interesting that there are a variety of successful tapering schemes.

You have answered my questions and have given me much to think about. You also have very good, clear writing skills, which makes it easy to read and understand your post. I'd guess it is a job related skill.

Thanks!
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

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

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby georgina » Thu Jul 13, 2017 12:18 am

I've always experienced symptoms as I dropped down a dose and it took me 2-3 days to adjust. I was having more frequent and softer movements and sometimes some gurgles and rumbles but no cramps , appetite was fine.

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Sat Jul 15, 2017 10:39 am

georgina, thanks for responding!

I expected a similar experience to yours, increased symptoms as I tapered vancomycin. I've had some slight increases in leg swelling, but bms, energy levels and strength have all improved. Just shows the variety of reactions that each individual experiences.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Sat Jul 15, 2017 11:57 am

I am now attempting to adhere to the following tapering schedule:

Week 1-2 (July 13-28): 125mg vancomycin, three times for one day; followed by two days without vancomycin.

Week 3-4 (July 29-Aug 12): 125mg vancomycin, two times for one day; followed by two days without vancomycin.

Week 5-6 (Aug 14-Aug 27): 125mg vancomycin, one time for one day; followed by two days without vancomycin.

So, basically, there is an interval with no vancomycin for two days, followed by a day of vancomycin, followed by another interval of two days without vancomycin, and so on. During the tapering I am also be taking probiotics, including Saccharomyces Boulardii.

Currently I am feeling pretty good. This is day two without taking vancomycin. I am waiting for symptoms to rear their ugly, nasty heads, but hoping that they don't come back. It has been a long, miserable experience.
Last edited by Machaon on Wed Jul 19, 2017 2:26 pm, edited 2 times in total.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby roy » Sat Jul 15, 2017 12:04 pm

Please consult your Dr and don't make up your own treatment.
What you describe is not a recomended regime and is VERY likely to be unwise for most posters.
Obviously you have the right to treat yourself any way you want but we will have to delete or edit posts that are or could be a danger to someone else.

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Sat Jul 15, 2017 2:28 pm

I learned about this tapering schedule from an article about Johan S. Bakken, MD, FACP, an infectious disease specialist and clinical associate professor at the University of Minnesota. For years Bakken provided FMT for his "recurrent" C-diff patients. However, Dr. Bakken decided to use "tapering" and kefir for a method of attacking C-diff spores.

During the years from 2009 to 2012, Dr. Bakken cured 8 patients using his tapering schedule. Based on that success, he treated 17 more, 13 of which were diarrhea free after 9 months.

I would not be offended if you deleted my posts, especially if you believe that they would not be of use to anyone else. Either way, I value this website as an essential source of information to me and to other C-diff sufferers.

Thanks!
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

shooten
Regular User
Posts: 40
Joined: Mon Aug 14, 2017 6:00 pm

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby shooten » Mon Aug 14, 2017 6:39 pm

I am on a vancomycin taper/pulse
4 a day for 1 week
2 a day for 1 week
1 a day for 1 week
1 every other day for a week
1 every third day for a week
I didn't have any issues when I was doing the pills every day. In fact when I got down to one a day for a week I was having some of the best BM I have ever had. One BM a day fully formed. Now that I just finished my 1 pill every other day for a week, things aren't as good. Having 3 to 4 BMs a day, still formed but not as good. Also having a lot of stomach tenderness right in the center of my stomach. Very similar pain to when I had gastritis. When I was taking the pills every day I could eat anything without a problem and actually started to gain some weight back. Now with the pulse dose along with the stomach tenderness I have a lack of appetite. Along with the vancomycin I have been taking 2 to 4 florastor a day along with 2 bluebiotics a day. I recently tried kefir but I think that might be causing some of the stomach problems.

So hopefully we are just going through the healing process during the taper/pulse dose and that this is our gut flora getting back to normal.
Last edited by shooten on Mon Aug 14, 2017 9:19 pm, edited 1 time in total.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby beth22 » Mon Aug 14, 2017 7:16 pm

Machaon, what you are describing is more a pulsing and there are protocols for that as well. We have had posters use them successfully. Just be sure to check it out eith your doctor. I, too, had symptoms when I would drop down a dose. I did best on twice a day 250 mg pills, but when I went to 1 a day, I relapsed.

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

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby MKW » Mon Aug 14, 2017 7:29 pm

Hi, Vanco taper/pulse regimens have a high success rate. And hopefully your treatment will be successful. I just wanted to say it is good advice to have a plan for your next treatment option in case you recur. I recurred a month after finishing a Vanco taper (8 weeks total treatment), and had felt fine the entire time. I was totally unprepared and had no plan for treatment. This is really my doctor's fault, but I seriously regretted it. Just have a prepare for the worst, hope for the best outlook with this. And do everything you can to reestablish the good bacteria as you taper and when you go off the Vanco completely. There will likely be remaining spores, and the good bacteria are what will keep those under control so you don't develop active infection again.

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

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Bobbie » Mon Aug 14, 2017 7:47 pm

See CDI - tapering, pulsing for several methods our posters have used. Two were helped most by the pulsing method.

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: Vancomycin tapering/pulsing. During tapering, do symptoms return partially? Fully? At 2x per day? Then at 1x per day

Postby Machaon » Tue Aug 15, 2017 11:49 am

shooten, thanks for responding! Sorry you are battling C-diff. Nasty stuff.

My eyes lit up when you posted! We are both pulsing at the same time.

shooten wrote:
> Now that I just finished my 1 pill
> every other day for a week, things aren't as good. Having 3 to 4 BMs a day,
> still formed but not as good. Also having a lot of stomach tenderness right
> in the center of my stomach. Very similar pain to when I had gastritis.

We are having somewhat similar problems. Previously, you had better potties than me, whereas mine had been mostly loose during my entire pulsing.

Buts... I am now doing one vanco every three days. I experience more gurgling and greater urges to go.

The theory behind pulsing is that the spores germinate in the absence of vanco, do some mischief as they attack our insides, and then every third day, or so, we take a vanco to bump them off. So we can almost expect increased symptoms in between vancos.

shooten wrote:
> When I was taking the pills every day I could eat anything without a
> problem and actually started to gain some weight back. Now with the pulse
> dose along with the stomach tenderness I have a lack of appetite.

Nerve-wracking, isn't it!? Today is my second "skip vanco" day. I can't wait until tomorrow to take another vanco! You are having more unpleasant symptoms than me. For instance, I still have full appetite.

You are on "every third day for a week", right? Are you feeling or doing any better?

shooten wrote:
> So hopefully we are just going through the healing process during the
> taper/pulse dose and that this is our gut flora getting back to normal.

I wonder how much damage has been done to our guts, and how slowly it recovers? But, we've just got to hope that the pulsing kills the majority of C-diff spores and we are able to re-establish the "good" flora in our gut.
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: No registered users and 23 guests