Should something be done with a “moderately high” ALP?

[Gaspereaux]

Good moring! I had my bloods drawn last week and both ALT and AST went back to normal. My GGT came down but not normal, and ALP stayed the same as three months ago at 177 It was previously 385. (here, the ULN is 122). I have been on Urso for nine months, but only on the optimal dose for four months.

My GGT lowered from 569 to 225 as well.

My question is, if, in three months time, my levels remain the same with an ALP of 1.46 x the upper limit of normal, does on jut remain on URSO alone or is it normal to take a second line therapy to attempt to reach the absolute normal?

Thanks everyone!

[DonnaBoll Administrator]

Great question! I'm glad you mentioned that you have only been on the optimum dose of Urso for 4 months. Being on the right dose is crucial to give the Urso the chance to be the most effective. I can assure you that many of us with PBC never have their liver enzymes in the 'normal' range. We do have a big improvement though from where we started. You mentioned that your alk phos started at 385 but now 177. That is a big improvement. I know it's hard to be patient but give the dose of Urso more time, I think. Some experts are happy with an all phos below 200. It certainly sounds like your numbers are going in the right direction. Personally, I would continue to have my labs drawn every 3-6 months for awhile and see what happens with this Urso dose. I know most of us feel like we need to make changes quickly, but remember that PBC is a very slow progressive disease. Have you had this conversation with your hepatologist?

[Gaspereaux in reply to DonnaBoll]

Not yet….but i see him early November….thank you, Donna!

[SimbaTutor]

For me, it took much longer for my ALP to finally get to the normal range even as the other numbers showed progress. I started Urso in May 2014. If memory serves me, ALP dropped gradually each month, but it was September 2015 before I reached normal numbers. Lifestyle changes and Urso were the guns in my battle. Be encouraged that your numbers have significantly dropped. Continued use of the medication will be effective. It just takes more time than we like. Since reaching normal numbers, my ALP has stayed in range even as the dosage was gradually reduced. I have maintained normal labs while taking 1 tablet daily for the past 2 years. Blessings!

[Gaspereaux in reply to SimbaTutor]

Wow, Simba, that is awesome. And thank you…it makes me feel tht all is going in the right direction. You and Donna are both right….it takes time, and we want everything to be “normal” because if it isn’t, we feel we aren’t “normal” either! You gals are a great model and inspiration!

[DonnaBoll Administrator in reply to SimbaTutor]

Patience is not in most people's vocabulary. It's hard to wait. Why was your dose of Urso reduced? It shouldn't be adjusted due to to lab values. I'm just curious. Glad your numbers are good!

[ninjagirlwebb in reply to DonnaBoll]

Agree. Urso is prescribed based on the patient’s weight. Hepatologist does not adjust per labs.

[SimbaTutor]

Over the 10 years since my diagnosis was confirmed with a liver biopsy, my gastro doc very gradually lowered my dosage as my lab results consistantly remained normal and I displayed very few symptoms of the disorder. We share the opinion of using the smallest dose of meds possible to keep this condition under control.

[DonnaBoll Administrator in reply to SimbaTutor]

I sincerely hope this continues to work for you. It is, however, somewhat unorthodox to lessen the dose based on lab values. They have returned to 'normal' because you are on the right dose. There have been instances when someone stops taking it or lessens the dose and the numbers seem to rise quickly.

[SimbaTutor in reply to DonnaBoll]

Thanks for your concern. I know this is a lifetime medication. I have no desire to return to the physical symptoms that led to my diagnosis. I still follow the lifestyle changes I implemented as I learned more about this disorder and how to reduce the load on the liver. Blessings!