So my son’s doctor agreed to put him on vancomycin for his PSC. We asked the pharmacy how much that will cost and they told us $10,000 !!! Is this what you guys are paying?? Please help!
This isn’t universal but insurance often pays because oral vanco is a rather unusual prescription that isn’t typically flagged in their systems. That said, insurance is under no obligation to cover as it is experimental (same with urso).
Plan A is to try to fill the prescription and see if insurance covers. A side note - try to special order the Ani pharmaceuticals “authorized generic” as this tends to work better than the other pill form generics. If you are stuck with a 10k bill then walk away and exercise plan B.
Plan B is IV vanco compounded for oral use. This is usually 2-4 hundred a month for ~1500mg/day. You will need a new prescription from your doctor (“x amount IV vancomycin taken orally” or some such). A company called Cutis Pharma offers kits by mail or you can call around to pharmacies to see if they can compound IV vancomycin for oral use.
Is that $10,000 per year or month?
My son started IV Vanco early October. Our insurance will not cover it. He is taking Cutis, pre-mixed. We are paying $400/month.
Feel free to pm me for the name of the pharmacy we are using.
My liver specialist has finally agreed to prescribe Vanco for me. I am teetering on the edge of stage four and a recent colonoscopy discovered dysplasia. I do not want to take the anti-inflammatory, Mesalamine, because if I am going to spend hundreds and hundreds of dollars a month, I want to CURE this disease, not suppress it.
Is Cutis Pharma the best way to go in terms of both price and efficacy?
(My understanding is Vanco is not covered by insurance?) Also, I have been reading and reading about VO and the dose being used around the world for people with PSC. What dose are people taking?? Lastly, is there a patience assistance program for VO as there is for Crohn’s people needing to be on Remicade? Thanks so much. I’m new here and happy to have discovered this group. I’ve suffered with PSC since 1992 and UC for about fifteen years. I live in Western Mass.
My son started IV Vanco from Cutis in early October and initial results are positive. However, there is nothing to indicate that Vanco cures PSC (nothing does at this stage). Best case scenario is that Vanco may slow or stop the progression at long as you are on it. If you cycle off the med, PSC returns. For some people, it doesn’t work at all, for some it only has positive effects on enzyme levels on a temporary basis. But, for many here on this site, it has worked well over a long period of time, with testing showing a stop to progression and in some cases improvement in the bile ducts and liver.
We are using 1500 mg/day (500 mg, 3x/day). The pharmacy ships the medicine already mixed into liquid state, and charges us $400/month. I can get you the pharmacy name if you wish.
Is your doctor willing to prescribe Vanco?
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