Hi everyone! I have some questions for those who have or are taking vanco. My daughters hepatologist is going to be prescribing so I have some questions.
First-what brand/s seem to be effective?
Second-does vanco relieve itching?
Third-any negatives we should be aware of?
Thank you as always! This group definitely helps ease my anxiety about all this
Vanco comes in two forms: pills and IV powder (typically compounded with a liquid). Both can be taken orally. Pills are easier to deal with on a day to day basis. Kids who can’t swallow pills and those who are stuck paying out of pocket may be better served with the cheaper compounded IV powder. Drinking compounded vanco can necessitate additional dental cleanings due to plaque buildup and non-permanent staining. This is not an issue with swallowed pills.
Some people have reported decreased efficacy of certain generic pills (Alvogen, Akorn, Lupin). Preliminary research suggests this may have to do with varying rates of dissolution of gel caps between manufacturers. Name brand Vancocin from Ani pharma appears to have the fewest issues, though some still report improved results by popping open gel caps before swallowing. Ani also offers a generic version of vancomycin, which are reboxed Vancocin capsules, that are equally effective and typically much cheaper for insurance purposes.
What I would do is to ask around at pharmacies to see if they can special order the Ani generic. If unable to source, settle with another generic. Pop open the caps before taking and be sure to take with food (gives extra time for it to break down in the stomach). If LFTs and symptoms don’t resolve in a couple months, look into compounding IV vanco for oral use.
Symptoms, including itching, often resolve on OV treatment, even where LFTs only partially respond. When I first started treatment I was taking Alvogen pills that brought my ALP down from the 600s to the 300s. Most of my symptoms, including pruritus that kept me from functioning, resolved within a month. Later, switching to a different brand (IV Kabi) brought my LFTs to normal and resolved my lingering fatigue.
Like any antibiotic, vanco can make you feel a little sick when taken on an empty stomach. It is a good idea to take with food in any case to slow down its travel in the GI tract due to the above mentioned gel cap dissolution issue.
My son has been on Vanco for two months. So far so good. You should check out thecomicalcolon.com for information on vancomycin. The site talks about the brands and how to twist off the cap for better results when taking the pill form. It also talks about research involving vancomycin.
I get IV vanco of whatever available brand, and take it orally. I get the vanco IV powder rather than convenient pill, because IV version is insurance covered for me and the pill is not. I have not noticed evidence of brand inneffectivity using various brands of IV powder but in my circumstances that does not necessarily indicate that IV version doesn’t have brand issues (it may, no-one knows yet)- obviously the gell gap dissolution issue is avoided, but there are still brand differences reported with the oral (pre-encapsulated) versions which have yet to be noticed by those taking IV version for PSC. The teeth stains are a real thing for me (they will go quite brown if I simply mix the powder with water and drink it), so I avoid it by dispensing the dose into very thin rice paper, and swallow the little bundle with water (may be tricky for a child to do). Itching went away in 3 weeks, and LFT’s normalized. No side effects that I am aware of, Doctors keep saying “Vanco is well tolerated”.
Dose matters as do concurrent drugs. The Stanford protocol is 50 mg/kg/d, up to 500 mg TID, the latter to carefully adjusted up or down based on biochemistries and symptoms.
My daughter has been taking OV for about 12 years. It eliminated bloody stools and normalized LFT . She was completely weaned off prednisone, imuran and urso. She still has occasional issues with itching and has issues with fatigue. All in all it OV was a God send. She had countless trips to the ER and literally near death experiences prior to OV. She never had issues with the often cited concern about VRE. No observed side effects from OV. She took the OV compound suspension for 3-4 years and later the Vancocin pill form. No difference In effectiveness. We did not notice any teeth staining when taking the compounded suspension. I don’t think she would be alive if we had not learned about Oral Vanco from PSC moms site. We had to convince Dr’s at UM liver transplant center and William Beaumont Hospital to try the treatment. It was the best decision we ever made. My daughter was not an ideal candidate since she already had significant sclerosis, I only wish we had found out about the treatment sooner, it may have prevented scarring.
Hey there! That’s great your daughter was able to get a vanco prescription. I’ve been taking vanco for my PSC since January 2018 and it’s the healthiest I’ve ever felt!
Brand and dose is very important when taking vanco for PSC. Both are patient-specific, so it might take some trial and error to find the right brand and dose that works for your daughter.
Regarding brand, from personal experience and from what I’ve heard in the PSC community, ANI Pharmaceuticals seems to be the most effective. Some people appear to respond well to Lupin if ANI isn’t accessible. Other brands like Akorn and Alvogen seem to not work as well. (I was accidentally put on Akorn a few years ago and completely flared until I was put back on ANI).
Regarding dose, the standard dose is 500mg 3x per day (a total of 1,500mg per day. However, some patients need a higher or smaller dosage.
The Stanford protocol suggests starting at 500 mg 3x/day for patients who weigh more than 30 kg and to increase the dosage until the patient’s symptoms normalize. For children under 18 who weigh less than 30 kg, the Stanford protocol suggests 50 mg/kg/day.
Lastly, many patients feel a difference with vanco within 3 months. Some respond in a matter of days. For myself, I responded right at the 6-week mark. So if she doesn’t feel better in a few weeks, give it at least 3 months to see how she’s feeling.
Please keep us posted! I’d love to hear how she’s doing after 3 months. I’m very passionate about vanco for PSC, so let me know if you have any questions at all!