Hi jtb, its rjm here again, I've noticed our paths are quite similar (i.e. no IBD, vanco success, etc.). I noted on some other discussion, and in your comments above, that you were adjusting to a maintenance dose of Vancomycin. I was figuring on reducing my dosage - which is the 'standard' initial 1500 mg (500 3 times daily), been taking for 6 mths now - down to half that. What success did you have with 'tuning' your own maintenance dose. I will be asking the pharmacist at the transplant clinic, but the very notion of Vanco as a PSC treatment was such an outlandish shock to them in the first place, that I think that my own accumulated judgement and resourcing might be needed to compliment their advice. Of couse if anybody else has some experience with this, it will be valuable. hope alls continuting well!!
jtb said:
Deborah,
I am 32 years old and have been experimenting with oral Vancomycin for about a year. I inquired about the Stanford study but was ineligible because I do not have UC and because at the time it was only open to local participants.
I began taking Vancomycin in pill form (generic Alvogen brand) at 1500 mg/day (500 tid) for 4 months. At the time I was having issues with recurrent cholangitis attacks. While on the Vanco, I did not have any cholangitis attacks and was asymptomatic with the exception of a little fatigue. My LFTs improved marginally but did not normalize.
I then stopped taking Vanco to determine if it was actually doing anything. One month after stopping Vanco, I remained asymptomatic and my LFTs remained slightly improved. Shortly after this (~45 days after stopping Vanco) the cholangitis attacks returned and my LFTs spiked upwards.
I returned to the generic Alvogen at 1000 mg/day (250 four times a day) for a month. With the exception of a minor episode post ERCP, I did not have any symptoms/attacks during this period. My LFTs improved but did not normalize.
At this point I switched from the pill form of oral Vanco to a generic compounded IV formula (liquid). I did this for two reasons. Oral vanco is expensive (~$3,500 a month) while IV vanco compounded for oral use is not (~$250 a month). As an experimental treatment my insurance has no obligation to cover the cost and I wanted to keep them happy. I had also read a study comparing the varying effectiveness of different brands of Vanco for use in treating C. diff infections. The point I took from this study is that some generics work great while others are quite poor (50% effective compared to name brand Vanco). I was hoping a different brand might show some improved results.
I've now been on a generic compounded form of IV Vanco for 3 months (brand unknown; 1000 mg/day). During this time I have been asymptomatic and my LFTs have normalized. Within weeks of beginning this new course I began to get my old energy back. Literally each week it felt like a bit of the fog was lifting.
My next steps are to get an MRCP done to compare pre and post Vanco images and to try to dial in a long-term maintenance dose. My kidneys are normal and there is no evidence that the Vanco is causing any other serious issues.
My biggest piece of advice for anyone trying this is that if you aren't happy with the results after a couple months, change brands and see if it improves things.