Hello, I have heard a lot of conversation about Vancomycin in the pediatric population, what about adults? Is part of anyone's treatment regime?
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.
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Our daughter is taking vanco. Dr Cox told me himself to use name brand or the prasco generic. Brand name vancocin would cost us $2100/mo, so I inquired about prasco they told me they didn’t have it but could order it. We pay $30 for 3 months supply of prasco. The capsule has on it “vancocin” in small letters but the box is labeled as prasco generic. Go figure.
Thanks guys. I will mention at my next appointment. Please keep us informed about your MRCP results, I am interested to know the results.
Deborah,
The MRCP is scheduled for August and I will be sure to update.
There are a few past and present trials involving Vanco and adults:
The mayo study: http://www.medscape.com/viewarticle/780291
A pilot trial I believe from Mass General (abstract only): http://www.deepdyve.com/lp/elsevier/an-open-label-pilot-trial-of-or...
Current Stanford trial: http://www.clinicaltrials.gov/ct2/show/NCT01802073
Dr. Cox (Stanford trial) is very approachable and has answered a number of my questions regarding dosage and long-term side effects. If you or your doctor have any questions, I urge you to get in contact with him.
Thank you for the articles. They are very small studies but have had promising results. I will mention it to my doctor.
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.
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.
I am curious to know how the Vanco impacts the ERCPs and MRCPs as well as liver biopsies in adults.
Dennis, I think Brad is referring to his insurance co-pay. My insurance will cover Prasco vancomycin at $10 per month as long as the pharmacy I go through has a contract with Prasco. I looked at other pharmacies that didn't contract with Prasco and it would have cost about $4000.
crewmom,
How do you find out if your pharmacy has a contract with prasco?
RJM - My numbers haven't moved up at 750mg (250 tid) and I'm still asymptomatic. I've been on this dose ~5 months. I'm planning on trying 500mg (125 qid) soon.
I'd still recommend anyone starting Vanco to start with a higher loading dose until LFTs normalize. I'm reluctant to draw too many parallels between Vanco for the treatment of PSC and C-diff, but a loading dose followed by low dose (500mg) is more effective than straight low dose for cases of C-diff.
MrTwissel - My six month and one year follow up MRCPs did not show improvement, but for the first time did not show progression. I'm hoping the bile duct scarring heals over time but the present scarring in the absence of PSC inflammation doesn't impact quality of life, so it isn't the end of the world if they don't improve.
Mr. Twissel,
I just called pharmacies and asked them who their contracted provider for generic Vancomycin was. Everyone I called was happy to provide the information. In Washington state, I found my local Rite Aid and CVS pharmacies contract with Prasco. The majority of pharmacies I called contracted with Akorn.
Crewmom
Crewmom- I guess I’m just surprised that your insurance would cover it. Being that it is “experimental” … wish I could explain to my insurance that it is cheaper than paying for a liver transplant…
Mr Twissel,
Have you tried filling a prescription for vanco? I'm not sure that the insurance company even knew why I received the prescription. Maybe someone on here who has been filling scripts for a long time will have a better idea of how to handle it if your insurance company balks. I do believe you can always appeal their decision.
Crewmom
I’m actually weighing my options… Still would need to convince my dr. To give me a Vanco prescription. Also looking at the possibility of joining the OCA clinical trial.
Hello…haven’t been on this sight for a long time. I have PSC and had my first transplant in 2012. The PSC came back in my new liver and I am now on a transplant list again for the second time. I am on Vanco for my PSC and have been on it for about a year. My doctor was able to get it prescribed for me by having it compounded into a liquid form. It’s cheaper that way and my medical assistance pays for it. I would ask your doctor if that’s a possibility. I have had normal liver numbers until recently and I believe the Vanco helped.
Hi Marie84, sorry about your recent issues… Did your liver numbers go back up while taking the Vanco? Are you taking 1500 mg/day?
Hey, jtb,
Thanks for detailed description of your experience with vanco. That's a lot of information there. One quick question, have you ever test blood drug concentration of vanco during your treatment? Thanks.
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.
I have, and the concentration of Vanco (if there was any) has been below detectable levels. This is checked through a Vancomycin test and really wasn't necessary, but I was curious and got my doctor to sign off. The first clue that Vanco is sneaking through would be elevated kidney function revealed in the metabolic panels we get anyway to check our livers. If anything looks fishy, then it would be a good idea to get a Vancomycin test. Honestly, it is a very rare thing to happen and isn't something to worry about. I've only come across a handful of case reports where this has happened at significant levels and it only appears to happen in extreme and unusual circumstances.