My 20 yo daughter was fortunate enough to find a doctor willing to prescribe vancomycin 2 months ago (thanks to a referral from a wonderful member of this group), and in this short time, all her numbers just came back normal!! When they first told us she had PSC back in November of ‘17, her levels were 10x normal. They were lowered a little on urso, but now they are normal! And unlike Urso, vanco has been shown to stop the progressionI I know this drug isn’t for everyone, and there is a lot to still learn, but it seems to work wonders when it works. I’m not sure why it’s so difficult to find a doctor to prescribe, I called about a dozen doctors, and begged the four hepatologists we saw before our final one, and they all turned us down. But after reading everything I could about vancomycin, I was convinced it might help my daughter so I kept pushing. For those that are curious, she’s on ANI brand, 250mg 4x a day. I just wanted to share her story in hopes of spreading the word about this amazing drug, and encouraging those who think it might help, to keep pushing for it.
Joki,
Thank you for sharing your story about your dear daughter. I am thankful that Vancomycin worked for her. I do want to encourage though to not let down your guard but continue to get regular labs and MRCP’s to keep an eye on the disease progression, etc. I hope she will continue to do well and that she will have many years of symptom free living. If you ever have a need please don’t hesitate to reach out to this group.
I did want to mention, that if you have not already done this that you need to make sure if your daughter is still single that you need to get a healthcare power of attorney from her giving you permission to access her health records and make medical decisions for her when she is not able. Years ago, these things were not needed, but in these modern times of HIPPA and all, they will not let you make those decisions in your daughters behalf without a healthcare POA.
Mark
Thanks for the advice. We will be very sure to keep taking all test, and good idea about the power of attorney. It was all so easy when she was a minor.