So I got my mri results and official diagnosis of PBC. Alp ast alt elevated/ positive for ama like really positive . MRI showed tiny benign tumor on liver. And that I was born with an odd pancreas. Basically how doc put it most ppl pancreas connects to liver with one driveway .. I have 2 driveways to the liver from pancreas. Otherwise liver looked normal and smooth, bile looked smooth . Nothing else really. My creatibecwas a little low and bun? He didn’t really seemed to be bothered by that. Not sure what that means. I asked him about staging. He doesn’t stage. N will not do a biopsy unless absolutely necessary but I am so positive for this disease we don’t need . Starting Urso 2x a day at first for a week then 3x a day moving fed after that. He says he is hoping after a month to see the numbers moving down . If so we will continue with dose, see him 3 math intervals for blood draws and 2x a year ultrasounds. I am hoping that with no liver damage or bile looking ok on mri I am in the early stage of this.
Mri results and official diagnosis - PBC Foundation
Mri results and official diagnosis
That’s great news. Take your urso religiously & follow your hepatologist’s advice. I am sure you will be fine.
Make sure you are vaccinated for Hep A & B as a precaution. Get a bone density to establish a baseline scan for future comparisons as pbc patients are more suspectible to osteoporosis.
Get your vitamin D levels checked & supplement if you need to.
Funny you mention hep a and b. He told me today at some point in my life I had both because it showed up showing that. I am hep a immune now and hep b I will need a hep b booster. He said a lot of ppl
have had hep b and a and never knew it.
I was vaccinated for Hep A & B when I was young. Hep B immunity elapsed so I had to get that series again. That is a series of 3 shots.
Hi if you already had Hep b and cleared it why do you need a booster?
Not sure exactly but i believe he said because once you have Hep A your are immune but Hep B can come back.
You’ll soon be an an old hand at this! Sorry you have to be in our club, but hope you get all the support you need here and from PBC foundation. Just one thing, when you’re on your regular Urso dose, please check that it’s the correct amount for your body weight. That’s important, and apparently quite a high percentage of us are taking too little.
Thank you Skypony. Yes he did mention my dose was by weight. I am prepared to follow his plan and get on with my life but he said I am borderline to have overlap with AIH as well which now has got me freaked out . He said we r not going to worry about that right bowl we are starting you on meds and work to get those numbers down. I am trying to grab the positive here. MRI was good liver and bile looked god bile had normal flow ? Hoping this is a sign of early disease.
Very well done for wanting to see the positive side! Sounds like your doctor has the right ideas, and it’s important to have someone knowledgeable who you can trust. Regarding your stage, I think quite a lot of us are in a state of relative uncertainty - goes with the territory. There are various ways to check liver condition, including fibroscan and elastography which measure stiffness (scarring) with varying degrees of success. All in good time though, just breathe, relax when you can, eat, sleep and exercise well. All of these things may help autoimmune conditions and certainly can’t hurt.
Thinking of you, and keeping fingers crossed for that Urso to do its thing!
Hi tnchikadee,
It sounds like your doc was able to ease your mind a bit and that you have a good plan for monitoring. I started on Urso about 6 months ago and I also have follow-ups every 3 months. I have responded well to Urso with no side effects and my labs are almost normal now, but most importantly, I still have no symptoms and feel fine so I hope you find that encouraging. Keep the positive attitude and live your best life. Glad things went well💕😊
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