PBC Guest Blog from Susan – June 5, 2023
My name is Susan and I was diagnosed with PBC in 1992 at the age of 38. There were no support groups at that time and the information on disease outcomes available was very bleak. My main goal at that time was to live long enough to see my young children through high school.
It was 20 years before I would meet another person with PBC. I was very sick at the time of my diagnosis extremely itchy, sleeping around the clock with raised liver enzymes including bilirubin and a positive AMA. At the time of my diagnosis Ursodeoxycholic Acid was not yet an approved treatment for PBC. I was told by my doctor that all that was known about the drug was that it made your liver enzyme numbers look better but it was unclear whether or not it was actually doing anything other than lowering numbers. It was very expensive and cost me between 800 and a thousand dollars a month so when I depleted my savings and could no longer pay for it my doctor’s advice was to take it or not as we don’t know if it will help. As I did not have a drug plan, I applied to the provincial drug benefit program for help. My application for drug coverage was approved but as the drug was not an approved treatment for PBC it was not covered. I had to apply for special funding approval through a medical panel which met once a month. My application was approved but the thinking was that no one should be on a medicine forever so it was only approved for a three months period, to determine whether or not it was having any effect. At the end of the approval period, I would then have to go off of the Urso for 6 months and wait for my liver enzymes to rise again and then resubmit an application for approval.
This process continued until the drug was finally approved in Canada for the treatment of PBC. Happily, my liver enzymes came down every time I restarted the medication and I have continued to have good response to the treatment.
I have had many ups and downs over the years but I am happy to report that I am in better health today than I have been in years. My liver enzymes have not only come down but have returned to normal and are good for someone who does not have liver disease. Along the way I have learned many things about living and living happily with this disease. I have found that keeping a positive outlook, managing stress, guarding my thoughts, meditating, watching my diet and engaging in regular exercise are key in living with PBC.