Relapse after three weeks on venco

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Caspia
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Relapse after three weeks on venco

Postby Caspia » Thu Dec 29, 2016 3:48 am

Hi there, new to the website, I just hoped to get some advice. Long story short I had a antibiotic infusion to treat a parasite and as a consequence ended up with much worse c.diff:/.... had a full on first infection with wd, chills, body pains, basically complete severe flu like state. I was tested for c diff and it returned positive. Was told to take venco for six weeks one tablet in the morning and two at night (each tablet is 250). When I started taking it wd was gone in couple of days...and my symptoms improved except the usual antibiotic ones, feeling weak, a bit of headache, etc. I went to my GP when I was half way through to check if it was really necessary for me to take it for six weeks ( my gut was already dwmaged from the previous infusion and couple of rounds of oral antibiotics, so I didn't want to take more abs that I needed) ... since the specialist was on leave, my GP decided that o can stop it. Unfortunately couple of days later I had a full on relapse:(... so I a man back on venco, continue for another three weeks. Don't have much hope I can kill it since I didn't succeed after three weeks of 750 a day of venco. Some hopeful or encouraging comments would be appreciated as I am really down especially as it is christmas, New Years time and I am just sick in bed. Also, do you know how harmful venco can be if taken that long with that amount, did any of you ever taken that much?... thank you for your support and for having this forum, it has been very helpful!

ResearchGrandma
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Re: Relapse after three weeks on venco

Postby ResearchGrandma » Thu Dec 29, 2016 5:19 pm

Most doctors seem to prescribe oral vancomycin to be taken 4x a day, or possibly 3 times a day, with equal spacing - to keep the level of vancomycin in your system relatively constant. Do you mean that in the morning you take 1 pill, then in the evening you take 2 pills at the same time? If that is what you are doing I would recheck with your doctor to make sure you are following directions. And, if those are the doctor's directions, I would suggest you start looking for a different doctor.
I was on vancomycin for a long time - off and on for almost 2 years - stopped almost 4 years ago. The first time I took four 125 mg pills a day for 10 days, and then for the first relapse I think it was also the 125 mg pills but for subsequent relapes I was taking four 250mg pills for 2-4 + weeks and then tapering for up to several months. My GI system is still not quite right, although in the last year I have finally seen definite improvement. Most likely the vanco contributed to the destruction of good bacteria. I am not sure if vanco caused me other problems of which I am still not aware.
Eventually I had a 10 day course of dificid which seemed to work for me.
Many here have had success with fecal transplants.

roy
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Re: Relapse after three weeks on venco

Postby roy » Thu Dec 29, 2016 5:41 pm

I have been here for 9 years and read many thousands of posts.
I have never heard of anyone using the dosing method that your Dr prescribed.
750 a day spread over 3 doses is normal for relapsing c.diff but overkill for the first treatment, but to prescribe initial treatment for 6 weeks is also unheard of.
The best treatment is the least amount of any med to effect a cure.
NOT a bucket load of pills that can damage your gut flora.
Research grandma has explained the normal dose.
Who prescribed your initial treatment?
Ask your GP to refer you to a GI specialist
Am I correct that your in Australia?

Ril
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Re: Relapse after three weeks on venco

Postby Ril » Thu Dec 29, 2016 10:20 pm

Welcome to the site. Please read the first thread on the home page about rules for posting.
I really don't have anything new to add to what Research Grandma and Roy have said. If I were you I would make an appointment as quickly as I could with a GI dr and get my medication regime reviewed and straightened out. I doubt that this is a new way of prescribing so I would want a knowledgeable dr to get me treated appropriately (or explain what is going on!!!)

Rita

Caspia
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Re: Relapse after three weeks on venco

Postby Caspia » Thu Dec 29, 2016 10:46 pm

Thank you so much for your replies. I am from Sydney in Australia and my GI specialist works for CDD that has been set up and is managed by dr Borody. I hoped that because of that they know what they are doing and since they are pioneers in it non of my doctors could understand that prescription so that is why they told me to go off it the first time:/... I a man so confused, can't talk to the doctor till 5th January as they are closed even after that it is hard to get hold of him. My GP advised to time the tablets every six hours three times a day for that reason you mentioned above, but I feel like I am going against Sth that was meant to work... well i guess it didn't for three weeks so have nothing to lose to do it three times a day rather than unusual morning 1x night 2x set up. I thought it is something very unusual as after reading some of the posts no one had a similar treatment:/... I am booked for FMT in February... so just hoping that will do the trick... I have been feeling so unwell as a result that I stopped working, and my leave is almost finished so I worry that I will lose my job, but it has been very brutal and the impact of banco on my body (had three other rounds of antibiotics and full on infusion with three antibiotics combo this year)...before that haven't touched antibiotic for ore than a decade I feel like am abusing my body and don't deal well with the treatment:(... sorry needed to vent... if it is dr Borody's place that recommended it should I trust it? I bet if I go to any other GI they will know less about it then CDD. Also, guys and especially you researchgradma, do you mind telling what are the symptoms that have been making your guts 'not right' , you mean was it full on ibs symptoms, any food sensitivities, maybe pains or constipations?... I would like to know that if this is all finish the recovery process won't be as painful as my last year... just hoping for a little hope that I can get things back to normal... before parasite and c diff I didn't have any stomach problems, my colonoscopy and gastroscopy were all fine, I want to believe that one day i can be back to my normal self the way o was before it all started:(

amyc
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Re: Relapse after three weeks on venco

Postby amyc » Fri Dec 30, 2016 1:20 am

I think either you or the pharmacist misunderstood the instructions on the vancomycin prescription the first time. One pill in the morning and two at night makes no sense at all. If you go back to the doctor and he says that dosing was what he intended I would not stay with them even if they do work at the CDD. I'm also unsure why they automatically scheduled an FMT for a first case of C diff?

What parasite did you have, and who diagnosed and treated that? Is the FMT meant to treat the parasite too? Or do the doctors suspect an IBD like Crohns or ulcerative colitis? FMT has worked for IBD I think, so that could explain the rush to FMT.

Caspia
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Re: Relapse after three weeks on venco

Postby Caspia » Fri Dec 30, 2016 1:48 am

I had diantomeba fragilis hence all the antibiotic treatments I had done. The infusion was the final as the parasite was very resistant it was done by the same centre CDD. Week after I finished follow up antibiotic after the infusion I developed the symptoms. Called them, they told me to do urgent tests and I was negative for parasite positive for c diff. As I said my other tests were good so they did not suspect anything except the bacteria. Did not talk to the doctor, nurse contacted me and told me that this is the treatment I need to do to rid of c diff. I didn't get any other clear answers. Was told to pick up the meds from the pharmacy next day and to book FMT so I did. The bottle states how to take it, the GI doctor wrote in the letter to my GP that he recommended to take banco morninog and night didn't refer to how many but the bottle does and it was done in compound pharmacy on request of my GI. My guess is that maybe after the unique procedure to fight the parasite which basically wiped out my good flore, they knew I will not be able to rid of c diff with antibiotics that's why they suggested FMT. I mean o don't might it... it is my silver lining in this situation as the antibiotics side effects are horrible, headache, dizziness, etc. hoping that infusion will make it better... I will try to get in touch with him as soon as I can whichever is 5th so it is still a week from now...in the meantime the antibiotic keeps my infection symptoms at bay so might continue taking them, but yeah quite nervous as to why I am taking so much more for so much longer:/


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