Hello fellow PSC’r!
In my personal experience the medication to “treat” the PSC is a larger issue than the PSC Itself.
My History:
I had abnormal liver function markers when I was ~25 years old. Took ~ a year to diagnose PSC.
Once the diagnosis was made, I went on a wild ride of medication.
For the first 2 years I was on Ursodiol (UDCA) to alter my bile composition. I stopped this as they could not definitively say that it would alter my long-term prognosis.
Following that, and moving to a new city with a new Dr. I was prescribed an immunosuppressant (Azathioprine) and a steroid (prednisone). I was on these for ~5 years.
These treatments caused my LFTs to be close enough to “normal” that my doctors were happy.
After a hip fracture, I was diagnosed with low-bone density (likely from the prednisone) and was switched to a different steroid (budesonide).
This continued for another 3 or so years (so ~10 years total on Immunosuppressant and steroid) when I decided that my quality of life was so negatively affected by the medications that I decided to stop them (I weaned off the steroid appropriately). I decided to do this because my day to day energy was so incredibly low, my ability to handle training was dismal, and frankly because I felt like garbage I began treating my family like garbage. I was becoming someone whom I never wanted to be and I realized that “prolonging” this quality of life just wasn’t worthwhile. Now, that was my decision and I do not advise anyone else to make that choice.
After ~1 year, my LFTs were back to looking ugly (my ALP had risen from ~200 to ~1,000).
However, I was feeling better - my energy was better, I was enjoying my life more - so I was reluctant to start treatment again.
After significant internet digging, I came across oral Vancomycin (an anti-biotic) as an off-label treatment for PSC. I went through a few doctors before I found one whom was willing to prescribe it for me.
I don’t know that anyone understands exactly how this works - but there are a few theories.
My LFTs normalized within 48 hours. Not “close” like they had on the Steroid and Immunosuppressant - Completely within range.
For the past 3 years I have taken ~250mg of Vancomycin orally 3x per day. Some brands do better than others, but all are outperforming the other medications.
I will say that I think that I feel “normal”, but the last time I was truly “normal” was so many years ago that I may not know what normal actually feels like anymore.
At the very least I’m able to do the things that I want to do and my body - more or less - reacts in the way that I would expect.
I have not had any side effects - which is funny because anti-biotics should wreak havoc on your digestive system.
The only downside is that it is incredibly expensive - I hit my OOP max early each year. New avenues like CostPlusDrugs make it much more affordable.
This is not medical advice and it is not necessarily suggesting that you follow the same route. It’s all just to illustrate that how I felt and performed was very much tied to the medicine that I was taking.
Goodluck on your journey and reach out directly if you’d like to talk or have more in-depth answers.