Hello everyone.
My name is Amanda and I was scrolling the net in regards to my condition and I came across you it’s… I live in England in a little village and I am not sure if diagnosis are different names across the sea but after reading many posts I can relate to all of the symptoms, struggles and lows that many have shared. I have a condition called Intrahepatic cholestasis of the liver. This condition effects the liver and bile ducts from bile stones and toxins that build up in the liver and make me unwell. I had cholestasis of pregnancy 22 years ago and also 19 years ago and fortunate for me once my little bundles arrived my LFT returned to normal with the help of ursodeoxycholic. Ten years ago I began itching like crazy and had some pain around the liver site. An MRI confirmed a stone lodged in my bile duct which led to an endoscopy and removal of the stone. My life returned back to 'normal with the help again of ursodeoxycholic. I know there are mixed reviews on this medication but for me it worked. It supported the health of my liver and enabled it to function…until 6 weeks ago. Familiar symptoms arrived itching and pain waking me in the night. I also have complete lethargy this time which is new to me with this condition. My bilirubin is currently 20 which according to my liver professor is not worrying. I have been prescribed with colestyramine 4mg sachet twice a day in the afternoon and evening to allow me to take my other meds in the morning. I am also booked in for an MRI. I just want this itching to go away. My skin is scratched and damaged and I have spots all over my legs and arms. All of my sister’s have the same condition and my little sister was so much worse bless her and she had a liver transplant 4 years ago and has two beautiful chdren
She’s doing amazing . So that’s my story and I look forward to chatting with you all. Have a lovely Christmas from over the sea in England xxxx
Hi Amanda
It seems your disease is not as much dangerous and severe as PSC. You have just stones . But PSC is autoimmune desease with no exact treatment. God bless you.
happy new year.