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Primary Biliary Cholangitis and Autoimmune Hepatitis
Transplants | Last Active: Oct 3, 2021 | Replies (72)Comment receiving replies
Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes of sickness, but the one that I can’t handle is the scratching. I’m on Rifapin the last few years.
Since 1990, I’ve had numerous ERCPS, which worked miraculous to get rid of the blocked bile, which got rid of the itchiness.
Last Wednesday, I had an ERCP, but this time, the magic wasn’t there. I’m back to scratching. The physician that performed the ERCP informed me that I was completely blocked on the right side and the left side wasn’t much better and that ERCPS were no longer an option.
I contacted my regular specialist and her nurse is blowing me off. She obviously doesn’t realize the seriousness of this liver disease.
I told her I didn’t want to slip through the cracks and be ignored. Now she’s not responded to my email. She doesn’t like to talk on the phone, which is sickening.
My MELD score is only 9, or was 9 the last time I checked.
How does one live with itchiness? I find it so debilitating and psychologically it’s bothering me.
Any words of wisdom? What’s the next step for me.
Replies to "Rosemary : I know you had PSC. I have it since 1988. I’ve had awful episodes..."
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@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.
"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.
Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/
Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?