Rising Alkaline phosphates : In June of... - PBCers Organization

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Rising Alkaline phosphates

Mommyofmany profile image
14 Replies

In June of 2019 my AP was 427, normal is 45-129. I started on Ursodiol and the number started dropping. By Jan. it was 180 and has stayed about the same all year. I am tested monthly. The last few months its started rising, now it's 201. I see a Gastrointerologist PA. He says it's just because of fatty liver. Can I do something to help this go back down? Should I be concerned?

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Mommyofmany profile image
Mommyofmany
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14 Replies
rderezin profile image
rderezin

Always take your drugs with food..don't be supprised if they increase you meds at 1 year..I have had disease 28 years and on drug 27 ..every three months blood ..not all my numbers ever normal early years it was up and down...when they stayed up my drugs got increased..also my work was stressful..moved several times..so got new drs...went thru menopause..weight gain and lose..suggestion..eat healthy..exercise (my favorite was pool at health club classes) and be a glass half full person ..happy we have a drug...oh..and gold bond over the counter lotion for inch is as good as anything a dr will offer ( the menthol in creme tricks the never ending in your skin to reduce urge to scratch)

You will be great

Mommyofmany profile image
Mommyofmany in reply torderezin

Thank you for your words of encouragement! It has been a very stressful time. And Covid-19 epidemic made it more stressful!

It seems every time I think my body is doing better another issue flares up. The pain in my feet was so bad yesterday I could hardly walk and my hands were killing me. I wonder is this PBC or arthritis? Then I think does it matter? I don't want to take anymore medication 😫 but the pain is better today! So, I'm going to take your advice, my cup is half full! Thank you again!

OdinsMom profile image
OdinsMom

Yes you’re correct to be concerned. Fatty liver doesn’t increase Alk Phos only, so unless your other numbers are also increasing it’s probably not fatty liver. Are you taking a correct dose of urso(13/15mg per kg)? I’d find a hep familiar with PBC. Post menopausal women normally increase Alk Phos but not that much

ninjagirlwebb profile image
ninjagirlwebb in reply toOdinsMom

Why do post menopausal women increase in alk phos? What specifically drives that?

OdinsMom profile image
OdinsMom in reply toninjagirlwebb

Loss of bone

ninjagirlwebb profile image
ninjagirlwebb in reply toOdinsMom

I see. There is a blood test that breaks down alk phos into 3 components: gastric, bone, and liver. So you can actually identify the make up of the total number.

BonnieClyde profile image
BonnieClyde in reply toninjagirlwebb

What is the name of the test?

ninjagirlwebb profile image
ninjagirlwebb in reply toBonnieClyde

Alkaline Phosphatase Isoenzymes

Test Includes

Relative percentages of liver, bone, and intestinal alkaline phosphatase isoenzymes and total alkaline phosphatase

ninjagirlwebb profile image
ninjagirlwebb

How did the GI PA determine definitively that it is fatty liver rather than the pbc acting up?

Mommyofmany profile image
Mommyofmany in reply toninjagirlwebb

Good question! I have no idea.

ninjagirlwebb profile image
ninjagirlwebb in reply toMommyofmany

You should ask him.

Mommyofmany profile image
Mommyofmany in reply toninjagirlwebb

I really don't know. I don't think he has much experience. Blaming it on fatty liver is just an easy thing to say without any real proof or further testing. I am trying to find a doctor with more experience in PBC that accepts my insurance.

ninjagirlwebb profile image
ninjagirlwebb in reply toMommyofmany

Find a hepatologist in a major teaching hospital system.

OdinsMom profile image
OdinsMom

Find a hepatologist who knows PBC. If Alk Phos only is rising it’s not pbc

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