I cut my dose from 1,000 mg 3x a day, after three months of no response, down to 500 mg 3x. I also began chewing the ANI capsules. Had my blood work done a few days ago and it was looking really good again. Time will tell…
Hi Jeff,
I am new to the site and hope that this is the appropriate place to post my question. My daughter was diagnosed with UC in 2010 and had a total colectomy in May 2017. She was diagnosed in October 2016 with PCS from findings on an MRCP. She is asymptotic and until just now (2 years after diagnosis) all of her LFT have been normal. Her ALP went up to 128 at Mayo Clinic(lab top range of 104) and MRCP showed decrease sludge in on bile duct but increase in another and increased branching dilation. No fibrosis in the liver. Her doctor put her on Ursodiol. My question is would this be considered slow or fast progression. I should have asked the doctor but didn’t want to in front of my daughter since she didn’t ask. I try not to let my daughter know when I am worried.
Thank you!
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Hi., PSC-Mom.
The only component of my blood work that really got my doc’s attention was bilirubin. That is a very good indicator of liver trouble, more so that than the ALP.
As far as your specific question, it is difficult to say just based on two problematic ducts. .
PSC affect everyone differently. At two years, I was told my liver had moderate to severe damage. At three years was at severe. Yet many pscers go for years without a major hiccup, maybe a tweak or procedure here and there.
Don’t be hesitant to call your doctor/nurse to ask questions.
Thank you Jeff, that is helpful information. I wish you the best!