pbc stages and symptoms understanding the progression and PBC | myPBCteam
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Have Any One Else. Heard That Even On URSO .. And Your Liver Enzymes Is Normal Again. Don't Mean The PBC Isn't Progressing..
A myPBCteam Member asked a question 💭

I read that's it's just bring your liver enzymes down. But don't stop the progressive of it..

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A myPBCteam Member

Urosidiol just slows it down

Just Recently Diagnosed With PBC So All Of This Is Very New To Me. What Does It Mean To Be AMA Negative With PBC?
A myPBCteam Member asked a question 💭
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A myPBCteam Member

I am AMA negative too. The antimitochondrial antibody (AMA) test is one of several different bloodtests doctors can order when they suspect liver disease. 95% of people with PBC are AMA positive… read more

Dietary Changes
A myPBCteam Member asked a question 💭

I’m looking to learn more about any dietary changes I can make to help. Also things to cut from my diet and things I might should add to it. Would love to hear about things your doctors have shared with you.

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A myPBCteam Member

My hepatologist said no raw fish, low salt, and fortunately coffee is good for the liver. Healthy eating best, even though I’m not able to eat much at one time so the said more small meals and healthy… read more

I Am Newly Diagnosed With PBC And Just Started The Ursidiol. 300mg 3 Times A Day. Has Anyone Noticed Hair Loss?
A myPBCteam Member asked a question 💭
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A myPBCteam Member

Vitamin D is very good for your hair.

What Advice Would You Give To Others Living With PBC?
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A myPBCteam Member

Just take one day at a time!! If you are able to get out of bed and can do a little something that’s better than doing nothing at all.Live your life to the fullest. Pace yourself, don’t try to do… read more

What Kind Of ALP Numbers Are Associated With Particular Stages Of PBC?
A myPBCteam Member asked a question 💭
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A myPBCteam Member

thanks Barbara, I wondered what my numbers were like compared to others. My doctor told me my case was mild right now and wanted to keep it that way and I get bloodwork every three months. But this… read more

Does Anyone Have An Enlarged Spleen?
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A myPBCteam Member

Thanks. My fibro scan didnt showed any significant scaring yet. My hemtologist said she didn't see anything not expected due to PBC and cleared me for hernia surgery that I have been avoiding. This… read more

Is Diarrhea And Nausea A Symptom Of PBC?
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A myPBCteam Member

I have more issues with constipation. Ugh!

Is Anyone Taking Ocaliva Along With Ursodiol? My Current Gastroenterologist Wants Me To Add This As My ALP Is Rising Slightly.
A myPBCteam Member asked a question 💭

I was diagnosed in 2003 and have been stable at stage 1-2 since then. My ALT and AST are slightly elevated but stable. My ALP is what Dr. is worried about even though it is 167. I take 900 mg per day of Ursodiol. I am worried about adding another medication with unknown side affects and efficacy. I have no real symptoms right now other than some fatigue and occasional mild itching. My last test showed little to no liver scarring/damage
Thank you all in advance for any information you can… read more

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A myPBCteam Member

I have been on Urso since my diagnosis in 2008 as well as Ocaliva. I participated in the final clinical trials for Ocaliva and it has helped to keep me symptom free (along with the Urso) until just… read more

Has Anyone Ever Tried "Liver Renew"? This Is Advertised As A Herbal Addition To Patients With PBC. I Am Very Curious, Sounds Great.
A myPBCteam Member asked a question 💭

I have Stage 2 PBC, hepatitis granuomatosis, , fatty liver, Auto-immune hepatitis, and NASH. Taking Ursidiol for 2 years.

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A myPBCteam Member

I would like to know the answer as well.