My husband was diagnosed with PSC in 1997. He was monitored with regular labs, Ultrasounds, & eventual MRI’s and was very stable until August of 2014. He was on Ursodiol from about 2000 & the dose was higher than he’s on now, which is 300 mg twice daily. I believe he was taking 900 mg in the am, 600 mg after lunch, & 900 mg at bedtime until he was hospitalized in August with severe narrowing of his Common bile duct etc…read my initial post to this site for the long version & details… Anyway, he is still on the Urso 300 mg twice daily and his Hepatologist & Liver Transplant doc saw no reason to take him off it.So from our standpoint, he was stable on Urso for 18 years, and his liver failure resolved, he’s not a candidate for the list, and he’s been stable since October. So, until we can directly link his Urso use to a PSC exacerbation (with God’s help that won’t happen again for a long time, if ever again), my husband has opted to stay on Urso. I am always interested to read about various medical opinions on its benefits or no benefits…
I am aware of the differing opinions on Urso. I am on 2000mg daily and have been doing well. I tried to decrease the dose once to 1200mg daily and within a couple of weeks my bilirubin started going up and then itching was intense. So went back on 2000mg and things settled down. For me Urso is a life saver.
I agree with CarolQ. For me 1200 MG works well for now, although I have been having a time with my digestion recently. When the bile doesn't flow we all know what happens with our digestion. Ugh!
So happy for U and your husband!
I was just reading over this blog post again and wondered how your husband is doing since you posted this in April. Is he still managing his PSC well with Ursodiol? I had my liver transplant since I posted here last back in July and am doing well. I trust you and your family have a very Merry Christmas and Happy New Year.
PSC 2011 / Liver-Transplant 7-2015
Hello fcmmark, Thank you for your note. I haven’t been on the site for a bit. My husband was very very sick in Sept.& we went to Cleveland Clinic (originally to get evaluated for a live donor transplant-his daughter offered to donate) and because he was pretty sick, he was an inpatient for 23 days, then did rehab for 12 days in the Cleveland area to “get stronger for transplant.” But he became very ill again, was readmitted to MICU in Cleveland on October 19th, and because his condition deteriorated so quickly, I opted to have him transported back home (to our home in New York State)because I did not want him dying in the hospital. We came home on Sunday October 25th at 4 pm and he died on Tuesday October 27th. His liver failure was not reversible this time. However, Had his doctor in Rochester done his job the way it should’ve been done, my husband most likely would have been listed last year after his very first exacerbation, which was 17 years since diagnosis. But that doctor waited too long to refer him, and we trusted in his “medical expertise.” I have realized after everything that this doctor was not the “top specialist” that he claimed to be. That doctor has not even bothered to call to find out how my husband made out or, if he even knew of Jim’s death, to offer condolences. I’m trying to do what I need to do each day, but this has been a terrible nightmare and it will take a long time for me to feel like I’m “doing okay.” My husband, Jim, had worked as a school social worker for 33 years at the same school that he attended. He worked with kids, helping them with all kinds of issues, and he always gave to others, rarely asking for anything for himself. He was the most generous and loving person I knew. We celebrated his 65th birthday 3 months before he passed away, on July 25th. He was taken far too soon and I miss him every minute of every day.
I am happy to hear of your transplant and I pray for your continued recovery. God bless you always.
Oh, to add salt to the open wound, the daughter (my step-daughter) who “offered” to donate, fell off the grid 5 days after her father was admitted to CC Sept. 12th. Never emailed, texted, called…NOTHING…until she showed up at CC the day before I had Jim transferred home…then she made herself out to be “so supportive” and “here for dad…” It was pathetic…so like I said, its been a terrible nightmare…
Thank you for your reply. Please accept my deepest sympathies in the loss of your dear husband. Words cannot express the sorrow I have for you in this great grief you must bear. I pray that the God of all comforts will flood your heart with the precious promises of His Word and that you will be able to live on in the knowledge that you did all you could for him. There is such a great need for doctors who have patients that are facing liver disease that if they are not fully qualified to deal with this serious health condition that they would refer them to a hepatologist. I hope you may be able with all you have gone through to be able to help another person whose path you may cross in the future that may be going through a similar condition.
Please be assured of my continued thoughts and prayers for you.
PSC 2011 / Liver Transplant 7-2015