I was diagnosed with PBC at the age 34. I’m 40 now. My enzymes were in 1100~1200 range when I was diagnosed but they are back down to almost normal 30~60 range.
I’m really bad at taking my Urso at regular intervals and expected dosage. How bad is it for my liver and how does it affect my life expectancy? What I have is Primary Biliary Cholangitis with an enlarged spleen. My spleen size has never gone back down since this was first diagnosed but everything else has improved.
Your labs are great! Do you also do the Shear-Wave Elastography ultrasound to monitor fibrosis in the liver? You should do it at least once a year. This will tell, if you have any scarring in the liver and what stage you are at. Best to you!
You can take your urso all at once if that works better for you. Best to take it than be skipping. Urso should help slow down an already slow progressing disease. If it works for you then a normal life is expected if it's caught early. Any idea of your stage?
Thanks 🙏 never thought of taking all of them at once. Currently taking 5 250mg tablets. I’m in between stage 2 and 3 I was told last time.
Medical specialists would have the final say, if it were I. Perhaps some will disagree, but I use the Global PBC Score (available online) as one barometer of my longevity; and its projection, based on my readings, is that my PBC Stage 3 will not affect my lifespan. I was diagnosed 2 1/2 years ago at age 80.Keep your chin up!
All the best,
Don
Thanks Don. I didn’t know about global PBC score. I’ll look into it.
My hep was trying to convince me that I was fine when I was first diagnosed. I pulled out this research paper with that formula and he showed me the calculations using that formula and recent blood work. I suspect it is more academic than anything else since he never showed me again.
Hi, ninja girl Webb!Yes, the formula is a statistical average of some sort, and not intended to as an absolute for a particular person. My specialist firm doesn’t use it either; it’s a mechanism that I found and use.
Best,
Don
Okay ..I was diagnosed 28 years ago before urso... I was early on told I would need to be on transplant list within a year...I had a will made etc. Urso was being tested on patients off the books at the Cleveland clinic at one year they decided to put me on URSO. My numbers improved but went up and down.. I traveled alot for work and would forget my meds ..finally I decided to take them all at night with food it it worked ..my numbers slowly went down ...I realized it was Urso and living longer . I adjusted to side affects and tolerance issues by remembering I was lucky there was a drug which would starve off the transplant need. My numbers improved but it took 18 years to be in normal r ranges.. I recommend take your meds with food ..find the best time of day for you and stick to it and be grateful we have a med...so many illnesses don't...we are so lucky....I am thrilled that your numbers normalized so quickly. You are very lucky...Keep up the good work and do your part.😊
Than you for your kind comments snd sharing your story. I’m glad you are doing well now and Urso helped. You are absolutely right in saying I’m very lucky that I can take Urso and I need to do my part by taking it regularly. I’m going to try and stick to taking it all at once to see if it’s easier to be consistent with.
Any worries you have pbc related need sharing with the PBC FOUNDATION They offer up to date accurate info with great friendship you will never feel alone again pbc foundation .org.uk
taking care of others
itch and bilirubin, long covid
Rising Alkaline phosphates 
Mucus and sore throat
Another soul destoying trip to the hepatologist. 
