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Comorbidity of localized scleroderma and primary biliary cholangitis (PBC). The coexistence of morphea, anti–mitochondrial antibodies positivity and PBC is a rare but possible association. PubMed, J Dtsch Dermatol Ges, 2018 Nov;16(11):1323-1327. (Also see Conditions Associated with Morphea and Liver Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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.
I was diagnosed with SSc last year, Doctor's think I have had it for the last 20 years (I'm nearly 43) I also have Raynaud's and recently diagnosed with PBC (Primary Biliary Cirrhosis). Get Blood taken every 2 weeks just now because my liver levels are too high, this condition really gets me down because I sometimes feel people don't understand that I am in pain. The SSc effects my hands and feet and I am in constant pain everyday. My Doctor has taken me off my medications for scleroderma just now because of my liver levels. Would love to hear from anyone who has the condition x Karen xx