Alkphos: Hi! Thanks for reading this! I’m on... - PBC Foundation

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Alkphos

Sam1121 profile image
9 Replies

Hi! Thanks for reading this! I’m on Urso and last November my alkphos was normal - like really normal- then in April I had a med check (cholesterol check) with my family dr and it had gone to 135 and I just had it done for my GI dr for PBC and it’s 157!!! I’m panicking!!!! All other blood work is perfect!!!! I have no symptoms. I was diagnosed in November 2016. I have recently lost 47 lbs with Weight Watchers and have about 5 more to get to goal. The nurse said she didn’t think this had anything to do with it rising. Any clues why it’s higher!?? Thanks so much!!!!

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Sam1121
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Ktltel profile image
Ktltel

You mentioned you've lost weight. Make sure you haven't lowered your URSO dose too much. It's weight based but, high end of your weight dose is better than low end.

Stella ❤

Sam1121 profile image
Sam1121 in reply to Ktltel

It hasn’t been lowered at all.

Ktltel profile image
Ktltel in reply to Sam1121

So your still taking the same dose of URSO that you were taking when you weighed more? Hmm, that is perplexing. When I lost weight, my Alk-phos went down. But when I lowered my URSO dose to compensate for my weight loss my Alk-phos went up some. 🤷

Stella ❤

Sam1121 profile image
Sam1121 in reply to Ktltel

I just wrote my dr to tell him about my weight loss. I haven’t seen him since I lost it. I’m just so afraid I’m a non - responder to Urso.

Ktltel profile image
Ktltel in reply to Sam1121

I'm sorry ❤. That is a huge worry... I know. Try not to stress too much about it. Stress makes everything worse.

There is another option if it turns out URSO isn't for you. I'm sure you've heard of Ocaliva. I don't know too much about it. But others on here are taking it. Their being carefully monitored by their doctors I'm sure. Maybe speak to your doctor about it. Could be you'd do better on it. ❤

Stella

iagra profile image
iagra

Your Alkphos numbers are not that high. Compare to many PBCers they are quite low. Alkphos is also known to fluctuate. Don't worry too much about it. Check with your GI on what he/she thinks. My Alkphos never goes below 157. I was diagnosed in August of 2016, when my Alkphos was 375. It did come down with urso, but, it is never normal. My GI is telling me it's very unlikely it'll be ever normal.

Enjoy shopping for smaller sizes! :)

cazer profile image
cazer

there are other causes for alk to rise so may be worth them checking if its not pbc.

at its highest i think mine was 800 and something... now goes from 95 to 380 within a few weeks.... it can vary a lot....they probably monitor to check it doesn't keep going up. your body has changed a lot... maybe its just got to readjust.... hope it settles.... well done for the weight loss... no easy achievement. best cazer.

FranSP profile image
FranSP

Good for you for being a Weight Watcher! I too am a member and am down 20 pounds. You are eating a health promoting food plan.

Sam1121 profile image
Sam1121

I just heard back from my GI. He’s not worried and said it is still fine. He’s pleased with my weight loss and is not lowering my dosage at this time! Thank you everyone! I’m not going to worry now!!

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