My story starts in 1997 when i first join a new chemical compagny located in the south of france as a process engineer. They did a bloodwork and the results were dramaticaly high for AST/ALT and GGT. Until 2003 nobody can put a name on the problem and the scanner and IRM images was close to normal. Until 2003 i had no treatment only bloodworks evvery 6 months.
In 2003 the IRM image shows a slight modification on the liver and with an extended bloodwork lead to the name of the disease : PSC. Since 2003 i have been taking URSO (14 mg/kg/day up to 25 mg/kg/day) and rifampicine (600 mg/day). There was no difference concerning the dosages of URSO on the lab results and actually my AST/ALT are close to normal but the GGT is 4 times the normal range.ALK and bilirubin is also normal.
The itching itself starts with the taken of URSO and never really stops. Rifampicine was effective to lower it until the end of 2015 but actually the itching restarts despite the rifampicine.
Actually i'm a bit tired as a result of the disease but also because of my job but except the itching i had no pain and i can sleep. I will have my next IRM and bloodwork in march.
Like some of you i had no other drugs or trials during all these years. Vancomycin is not known for this disease in France. Same for new therapies like norURSO... it's a pity when you look at all the time we are losing.
I see that vancomycin is a rather expensivve treatment but how much is it in the US for example ? Is it easy to have it or no ?
Hello Philippe and welcome. Without insurance, 1500mg/day of oral vancomycin (the pills) is about $4000-8000 USD for a months supply. IV vancomycin can also be compounded so that it can be taken orally and this runs about $400-800 USD for the same amount. Vancomycin is still not a generally accepted treatment for PSC and doctors unfamiliar with the treatment are unlikely to prescribe. That said, the treatment is gaining traction and a number of doctors are prescribing it for their patients. In the US, if a drug is FDA approved for any condition/disease, it can also be prescribed "off label" by a doctor to treat other diseases for which it has not yet been formally approved.
Well that's a lot of money.
When you speak about IV vancomycin, do you mean the injectable product ?
Do you have brand name in mind about it ?
Generally, prescription drugs cost much more in the US, so in Europe vanco might be much cheaper…especially with national insurance etc?
Yes, IV vanco comes in powder form and while it is typically used for intravenous infusion, it can also be taken orally. A compounding pharmacy will typically add water and a stabilizing agent to the powder to help keep the vancomycin suspended over time. Doses are measured out in mL and taken orally.
More recent clinical trials have found therapeutic equivalence for most IV vancomycin generic brands (many IV generics bought the manufacturing process from Viropharma circa 2005). Personally, I wouldn't stress too much about brand if you are compounding an IV generic, but it can be a variable to explore if your numbers do not normalize after a couple months. I've had success with generic IV Kabi.
I take 1500mg a day and the months supply is about $7000-$8000. Its really expensive, but my ERCP every 6 weeks is more expensive. Luckily I have insurence and it's all covered except for a co-pay. They probably hate me for all these bills, but too bad. Also, you can save a little bit of money by using optunrx mail-order pharmacy.
It's a lot of money and here in France, the drug has not been confirmed for the PSC. So it's impossible to have it given by the doctor or to buy it freely.