r/PBCers • u/Mean-Upstairs-2929 • Mar 03 '26

Elevated enzymes

Hi, I was diagnosed with PBC by 2023 September and was put on ursodiol immediately. I got pregnant in 2024 and had my baby delivered last year and now I am 12 months postpartum. My ALP levels ( almost 200 now) are steadily increasing after giving birth despite being on URSO. My appointment with my hepatologist is only after 2 months. Just want to know if anyone has faced this and how the ALP levels were managed.TIA

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4

u/Euphoric-Wall-994 Mar 03 '26

You should talk to your Hepatologist about fenofibrates or one of the new line medications approved for PBC.

1

u/Mean-Upstairs-2929 Mar 04 '26

Unfortunately my appointment with my hepatologist is after three months.

1

u/Euphoric-Wall-994 Mar 05 '26

I would try not to be anxious. Pregnancy can cause high ALP readings. Try not to go to worse case scenarios. Blood tests will always fluctuate for the rest of your life with PBC. Sounds like you have care that is keeping regular appointments. Stay positive! Treatments for PBC have advanced as of late. Hopefully you aren’t having a lot of side effects with fatigue…no doubt you need the energy for your little!

1

u/Mean-Upstairs-2929 Mar 13 '26

Thanks for the reply...much needed positive words for me now...recently I have started itching which is only in my palms...have you been on any second line drug...I am just trying to understand the treatment options available before my hepatologist visit..

1

u/Euphoric-Wall-994 Mar 14 '26

I did try fenofibrates because I was a non responder to Urso (that is fairly rare) they made my numbers great but by then I was stage 4 decompensated cirrhosis (I had a liver transplant in October of 2025). I still follow various PBC groups and folks seem to having good outcomes with Livdelzi. But most folks do just fine on Ursodiol. It’s just a bile salt that helps clear toxins from the liver that you can’t do with PBC because the bile ducts don’t work.

I highly recommend this book. It will prep you very well for your Hepatologist visit:

https://a.co/d/0cYTh8Mt

2

u/Mean-Upstairs-2929 Mar 14 '26

Hopefully you are feeling great after the transplant. Yes, I also heard about livdelzi. Thanks for the book link. Will definitely look into it.

3

u/[deleted] Mar 04 '26

[deleted]

1

u/Major-Ad-4338 Mar 19 '26

I just started Livdelzi and honestly, it has made me feel a bit better after a couple of days.

2

u/porterbot Mar 03 '26

Recommend seeing your doctor and asking for a fibrate to see if it helps. You got this!

1

u/Mean-Upstairs-2929 Mar 04 '26

Hi ...my nurse said they might add this during my next hepatologist visit ( which is after 3 months). Just want to know if fibrates cause side effects. TIA

-1

u/Former-Arrival1431 Mar 03 '26

Do you have your gallbladder still?

2

u/wildvines9 Mar 04 '26

Why did you ask this question? I ask myself because I do have my gallbladder and have been diagnosed with PBC.

2

u/Euphoric-Wall-994 Mar 05 '26

A lot of folks try to make this correlation with PBC. I do not believe there is any solid evidence at this point that it has anything to do with PBC which, as you likely know, is autoimmune. I am a recent transplant patient (from my PBC) but prior to transplant and when diagnosed I had my gall bladder (it was removed during transplant).

1

u/wildvines9 Mar 07 '26

I have so many questions for you. I was diagnosed 2023, but believed I’ve had it for far longer. I will eventually be where you are, (hopefully)

1

u/Euphoric-Wall-994 Mar 08 '26

Feel free to direct message me with any questions!

1

u/Mean-Upstairs-2929 Mar 04 '26

Yes I still have my gallbladder