Vanishing Bile Duct Syndrome

[MSJT]

Hi, I was just wondering if anyone on here has been diagnosed Vanishing Bile Duct Syndrome (Ductopenia)? I'm in the process of being tested for this. Thanks

[vicary]

Hi , I was never told I had vanishing bile duct syndrome & although it is usually caused by certain drugs ( ie antibiotics) but is also the same with PBC ( of course not in all cases many live with PBC with none or very few symptoms) that wasn't the case for me it destroyed my bile ducts ... progression of PBC is different for everyone & many respond to medication very well unfortunately for me I was none responsive & had a transplant in 2019 . Please don't think the worst like I said many respond to medication to slow down the process of PBC & it is good they are checking on your bile ducts to ensure you are given the best treatment . Do you have any symptoms with regards to lack of bile duct function ie persistent puritus , fatigue & jaundice?

[MSJT in reply to vicary]

Hi Vicary, thanks for your reply. I have fatigue and some itching but no jaundice (from what I can see). I have been on Urso tablets for 1 month now and have just had blood tests done. The results show that my liver enzymes have increased in the last month which I'm a bit disappointed about. It also shows that my bilirubin has gone from 8 to 12 in the last month. Do you know if this means the tablets are making it worse? How have you been feeling since you liver transplant? Do you still have the same issues? Sorry for so many questions. I'm feeling so nervous about everything.

[vicary in reply to MSJT]

Please don't apologise, ask me anything , from what I remember it takes alot longer than a month for urso to stabilise things ( must be taken for months to have an effect I only stopped responding to Urso after 5 years ) I was diagnosed with PBC at age 45 although they believe I'd probably had it all my life ... it is a slow progressing disease .My blood total bilirubin reached over 35 this was approximately 2 years after I stopped responding to Urso so I don't believe its Urso because you won't really be benefitting from it yet but I believe there is another medication now if Urso doesn't help , unfortunatelyI don't know what that's called & the diseasehad caused too much damageto my bile ducts so nothing could or would help , I had extreme puritius & although my eyes didn't jaundice my body did . I was put on the transplant list & whilst waiting I had a nasal billary drain to help drain off the bile which was entering my bloodstream . My transplant went really well , by no means has it been a walk in the park more a roller coaster ( my story is far too long lol ) but with regards to still having the previous symptoms nope they where gone instantly, I would never want extreme puritius back my quality of life was zero my fatigue was off the scale . Of course I still have PBC but it's been slowed right down now so no symptoms yes I can get tired but I never let it stop me from living everyday to the fullest just rest when I need to recharge . It is alot to take in but it sounds like you are being well taken care of . Please don't be nervous or worry neither of these help ...in my experience positivity & staying strong has good results on the body . Remember we are all different no one has the same journey & blood tests are the way they keep on top of things . Always here if you need a chat . Sending my best wishes ❤️

[MSJT in reply to vicary]

Hi Vickery, I was just wondering what percentage of your bile ducts had disappeared when you had to have your liver transplant? I hope you don't mind me asking. I've just been told that 50% of mine have disappeared. Thanks

[MSJT]

Thank you for the info. My blood has been being monitored for 10 years and this last year I have had MRI scans, CT scans, Fibroscans and a liver biopsy. It was the liver biopsy that showed loss of bile ducts. I think the jaundice is the same for me, my eyes don't look yellow but my skin does seem to look more tanned than it used to. I'm 45 next year so a similar age to when you were diagnosed. It's all very scary to think about so I do my best to try and distract myself from thinking about it. I'm glad you have felt better since your transplant. Best wishes to you too.

[DonnaBoll Administrator]

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