how long til I give up on vanco?

[cmomes]

Hi all,
I've been on vanco (4x day, 125mg) for 4 months. A month ago, I started a long term pulse/taper schedule that I found on this site. About halfway through the pulse I started getting pretty similar symptoms to when I had active c diff. I admit to freaking out and being a little irrational (not just on this site), but I managed to wait the 3 days. I was still struggling at the end of 3 days so I called my doctor, and she recommended I go back to the beginning of the vanco pulse schedule and start it over. That was pretty discouraging but it made sense, especially since the pulse dose is supposed to draw out the infection from the spores and you would expect to feel symptoms during those longer stretches of "off" days.

Here's my question now, though - I'm back on vanco (have taken 3 full days since I talked to my MD) and I'm still having pretty bad symptoms. I'm wondering if this means vanco is no longer working for me, or if I should hang in there and follow the plan to pulse, which obviously will result in feeling crappy some of the time. What's your experience with long term vanco? Do you think I should hang in there and stick with the pulse, or does this sound like the time to jump ship?

I don't want to try Dificid until I know for sure I'm still active CDI, but that will mean I need to go off everything for 14 days and get the PCR done. I'm feeling bad ON the meds right now, so I'm just not sure what to do here. Please help. Thank you so much.

[ResearchGrandma]

I am not sure why your doctor won't have you try 250 mg vancomycin 4X per day. By my second course of vancomycin, that is what my doctor was prescribing for me, and I did not have severe symptoms. If you are having severe symptoms, (watery D multiple times per day). your doctor should not make you go off medication for testing, but should treat based on symptoms. Unfortunately, while I always felt OK on the higher dose of vancomcyin, after a month or 2 of stopping the taper my original mild c. diff symptoms would return and I would test positivie - so I did take dificid. I did not feel well on the dificid - extremely tired, and my stools were still way off - but it did work for me.
Recently I was in a situation where I had to consider whether to take clindamycin (which is what triggered my c diff initially). I consulted with an infectious disease doctor, who advised that for 5 days of clindamycin, I should take 15 days of vancomycin as a prophylactic (250 mg 4x/day). (Fortunately I ended up avoiding the clindamycin for now). If I were you I would be looking for another doctor who would treat you based on symptoms - either with higher dose of vancomycin, dificid, or perhaps fecal transplant if that is something you are interested in.

[cmomes]

ResearchGrandma - Thanks so much for the reply, and sorry for any confusion - it's not my MD telling me to go off meds to test - that was just my understanding from reading posts on the site about accurate tests needing to be 14 days out from treatment. I'll look into the higher dose. Hope you get to avoid clindamycin! Thanks again.

[NanciT]

I would see your MD and explain the symptoms you are having while still on the Vanco. There comes a point when it should start working and symptoms should decline. If that is now the case, you need to see them and ask what their plan is. They may want you to be on it a bit longer, or may considering changing the medication.
Hopefully this will kick in and you will start feeling better!
NanciT

[beth22]

I remember that vanco worked for me to stop the symptoms, but when I was on it for a long time, it started to give me symptoms and GI distress, although not c diff. However, I feel that it did damage my GI tract quite a bit. I was not able to do the taper. I relapsed when I was on one 250mg pill per day. So, I opted for FMT, but Dificid was not available then. I think Dificid might be worth trying in your case. Talk to your doctor.

[jjglad]

is it ever worth retesting anyway, if the Vanco. isn't working then I would think the CDiff test would show positive if that is what it is??? See what the Dr. thinks! esp. before the weekend...

[cmomes]

jjglad, beth22, NanciT - thank you all! Even with all these questions racing around my mind lately, it helps so much to hear from you. My doctor is looking into the cost/insurance coverage for Dificid just so we know what we're looking at, and for now I'm going to keep going with the vanco pulse/taper, if I can stand it. That will be a few more weeks. If I make it through and I still have symptoms after that, I'll try the Dificid. I agree with you, beth22 on the damage to the GI tract. Vanco seems to have its own set of GI symptoms for me, too. I try to remember that it's a helper, but it can be tough when I'm feeling sick from it. Thanks again, all.