Hope all of you and your loved ones are doing well. I have a girlfriend who is diagnosed with UC and PSC. She has been on Stelara for almost two years and doing quite well. Her UC is in remission with minor hiccups from time to time and she has been pretty stable. Once she was diagnosed with PSC last year, I found out about oral vancomycin therapy on this forum as well as many others and decided to be proactive and get her started on it right away before she started to suffer from her liver getting damaged and scarred.
We spent 3-4 months finding the right doctor to prescribe the medicine. As she is from Norway and we live in Canada, we tried many different doctors and hospitals in both countries until we found a doctor at Cornell in NY, who was supportive of the therapy and kind enough to prescribe the medicine.
Last week when we went to NY from Montreal to pick up the medicine, we found out that the pharmacy only had 17 days of supplies (around 140 pills) based on a dosage of 1000 mg a day and they were asking $3400 for them. I wasn’t sure whether there was a mistake as I read some other people’s experiences here about their costs being $500 a month.
Before reaching out to her doctor, I wanted to ask you guys to see what type, form, and brand of oral vancomycin you are taking and what the cost is like on a monthly basis. Given that we are not from the US and not insured there, I expected the cost to be high but not $6-7K a month. I’m not sure if having US insurance is even helpful since this is an off-label therapy but I would really appreciate it if some of you could chime in and guide us in the right direction.
All the best to each and every one of you dealing with this difficult disease. Thanks in advance.