Long term use of Vanco?

[MJsSupport]

If anyone has personal experience with long term use of Vanco and would be willing to share their experiences either here or via private message, I would appreciate your input. Thank you.

[beth22]

I was on it for months and months, but the more I took it, the more GI discomfort I got. I do know that my ID told me that he had patients that he put on it for a year or so, so it is done.

[getwellsoon]

I also was on it for months and months at a time. Dificid w/ a Vanco taper finally cured me. I know there are people who have been on a daily dose for years so it is done.

[chillasboots]

@getwellsoon how did you do the dificid n vanco taper? In case I relapse or whatever happens I'd like to know how your last treatment cured you. Thanks
-Danielle

[getwellsoon]

I was given Dificid for a relapse and had bad side effects from it and felt horrible. Gi Dr. then put me on Vanco taper along with the Dificid. I had been on Vanco many times and had tapered many times but still I give the win to the Dificid. I think even though I felt bad taking it it finally cured me. I only felt better months after both meds and Vanco always gave me loose stools also. My real healing didn't start until all meds were over and took me another year or so. All told, it took me 3 yrs to heal and almost 4 to get back to normal stools. I still have issues here and there but mostly feel good GI wise now. Hope this helps.

[roy]

I think the reason your asking is because vanco stops
MJs symptoms.
Well my non medical oppinion is that long term vanco has got to be a better option than a coffin!
If I had the option of constant meds for my mom, and the knowlage that I have now, I would have demanded that the Drs put her on vanco long term without a break.
Instead WE TRUSTED THEIR DECISION TO WITHDRAW MEDS TO SEE WHAT HAPPENS!!!
She died 8 days later !

[seekingcure]

I agree with Roy. The doctor who did my FMT mentioned that, if the c-diff returned after FMT, long-term Vanco (for the rest of my life) might be a possibility, so it is done. She mentioned this option because I have so many UTIs and have to take antibiotics so often for those, which puts me at risk of a return of the c-diff.

[MJsSupport]

Yes, long term Vanco is definitely an option, and is more than likely the course she will take. Surgery is just too risky an option unless her life literally depends on it. I will keep you posted.

[NikaNik]

Hi, Nora! Did you look into the upper FMT transfer? (I believe Beth suggested that and I agree it could be an option for MJ since the colonoscopy transfers didn't seem to hold long). Also - did MJ feel better on Dificid rather than Vanco? Dificid isn't supposed to harm as much, or hardly any, good gut flora. I wonder if long-term Dificid could be an option as well. Just thinking out loud. :)

[MJsSupport]

She doesn't want to do the upper/endoscopy transfer. She has severe acid reflux and doesn't want to take the risk (she has, in the past, had multiple ulcers in her esophagus. I'm not going to argue with her. Dificid worked well for her, but by the end of the prescription she was starting to feel pretty sick from it. Plus it's not part of Kaiser's formulary and we had to get a special dispensation, of sorts, to get it.

[Bobbie]

I was on Vanco on and off for years.i tolerated it well, and it helped me lead an almost normal life. Surgery is always a last resort and I would get 2 or 3 opinions. Doctors even in the same field, often disagree. None of them are infallible.

[skizamii]

Did any of you have side effects from Vanco? I have been on it several times, the last time was at the begninngin of April. I didn't feel well when I was on it, but don't remember bad side effects. My latest treatment was with Dificid, which wiped out c. diff for a bit but I just tested positive for toxins again. The second time I had Dificid I had really bad side effects including weakness, fatigue, nausea, loss of energy, etc. I just took my first vanco and within 45 minutes had exactily the same thing. I'm so weak I can hardly get out of bed, feel so miserable it feels like I'm dying.

I'm wondering if it is possible to develop side effects to these antibiotics. If so I'm screwed :-(

[NanciT]

I didnt have any symptoms from Vanco until the third round. Then it caused nausea and difficulty eating, this last time I had bladder pain and found that listed also on side effects.
My first round of Dificid I felt great, no issues. The second pulse/taper dose is when I started feeling ill. I ended up in the ER and they told me it was the DIficid. I continued on with it as I lowered the dose, just did not feel well. As I was down to a pill every 2nd day, slowly started to feel better. I now have IBS but can deal with that...unlike the CDIFF.

[ResearchGrandma]

I was on vancomycin for months, off and on, and I don't think it made me ill. I took dificid once, and experienced the weakness and really off feeling that you are describing. If you are unable to tolerate medications, it sounds like you should next consider contacting a GI doctor about fecal transplant.

[skizamii]

I had 2FMT'S I neither of them Were Successful I So I'm not inclined to go down that road again. Appears as though I am developing difficulties with both Dificid and Vanco, It makes it Very hard to function (body aches, weakness, chills, dizziness, fatigue) but I may just have to deal with it. I Could deal better if I knew that the outcome was going to be sucessful Literally nothing but the second Round of Dificid worked.

The biggest question right now is do I have an active infection or am I just Shedding toxins. Does anyone have any experience or knowledge about how long toxins are shed? I don't know it I should even be taking Vancomycin. I cant Seem to set the dodoes to give me any insight into these issues.