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February 25
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Answer Summary

Members discussed elevated alkaline phosphatase levels, with many sharing that high ALP was how they were initially diagnosed with primary... Read more

Members discussed elevated alkaline phosphatase levels, with many sharing that high ALP was how they were initially diagnosed with primary biliary cholangitis. Several members described their medication journeys, including successful results with Urso, Livdelzi, and Iqirvo, though some had to switch due to side effects like heart palpitations or nausea, with practical tips including taking Livdelzi with an evening meal to reduce stomach upset and working with doctors on insurance approval through programs like The Assistance Fund. A recurring theme was hope and encouragement as members celebrated each other's normal test results and shared the relief of finding treatments that work after years of elevated numbers.

A myPBCteam Member

I had blood work this yesterday and got results this morning. My ALP was in normal range. Probably the first time in 30 years.

February 25
myPBCteam

Does anyone else have high alkaline phosphatase (ALP)?

Yes, high ALP levels are very common in people with PBC. In fact, elevated ALP is one of the main markers doctors use to diagnose the condition.

High ALP happens because damaged bile ducts release this enzyme into your bloodstream. Normal ALP levels range from 44 to Show Full Answer

Does anyone else have high alkaline phosphatase (ALP)?

Yes, high ALP levels are very common in people with PBC. In fact, elevated ALP is one of the main markers doctors use to diagnose the condition.

High ALP happens because damaged bile ducts release this enzyme into your bloodstream. Normal ALP levels range from 44 to 147 international units per liter of blood. PBC is typically diagnosed when ALP levels are at least 1.5 times higher than the normal range.

Many people with PBC have this issue, so you're definitely not alone. More than half of people diagnosed with PBC don't even have symptoms at first—the high ALP is often discovered through routine blood work. What does high ALP mean for you?

High ALP levels are significant because they indicate liver inflammation and bile duct damage. However, lower ALP levels over time are associated with better outcomes, including a lower risk of needing a liver transplant.

Your ALP level can also help predict how well treatment might work. Studies show better treatment success when ALP drops to less than 1.67 times the normal limit within six months of starting ursodeoxycholic acid (UDCA).

Your doctor will likely monitor your ALP levels regularly to track how your liver is responding to treatment.

February 25
A myPBCteam Member

Super Congratulations!!!!!!!

February 25
A myPBCteam Member

My last visit my visit wasn't to good, my doctor was in a foul mood ,I left feeling upset she wouldn't let me finish my question and sent me on my way. I have a new diagnosis they found emphysema in my lungs . They prescribed me meds for me that are steriods. I hate them 😒 they mess with hormones and other things. I won't leave next time until I get a answer.

February 25
A myPBCteam Member

I did before my transplant

February 25

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