It's been a long, long time since I was last here - busy enjoying life and battling on despite the health problems.
I seem to be making a habit of collecting rare conditions and that's what brings me back. I recently 'celebrated' my 7th scleroderma birthday (7 years since diagnosis of limited cutaneous systemic sclerosis) and I'm wondering how many of us 'sclerodermians' also have Primary Sclerosing Cholangitis (PSC). Who better to ask than the expert patients on the forums.
After several years of poor liver function tests they reached a stage where action was needed and I was diagnosed in November 2015 with PSC. Since then I have done extensive research and educated myself as much as possible. My understanding is that the expectation for 'sclerodermians' with liver problems is usually Primary Biliary Cirrhosis (PBC), which is what the consultants thought was my problem, but there is now no doubt that my diagnosis is PSC.
I have only managed to find one research paper covering limited cutaneous systemic sclerosis and PSC in the same patient and, apparently, that was the first case known (at least to the paper's authors) and that was in March 2015. I can't believe that I am only the second person known to have both diseases so thought I'd post this in the hope that there are more of us out there (not that I would wish it on anyone, of course). If so, I hope to be able to compare notes as neither my scleroderma Prof, nor my hepatobiliary consultant have ever come across both diseases in one patient and are unable to answer any of my questions. We are all on this magical mystery tour and learning together!
So, if any of you have both limited cutaneous systemic sclerosis and primary sclerosing cholangitis, please let me know so that I can get an idea of numbers. I'm sure my consultants would be interested to know too. Thanks in advance.