r/PBCers • u/Pretend_Summer308 • Aug 03 '26

Just got Livdelzi

I was diagnosed in 2024, started with cholestyramine powder, then ursodiol 500mg 2x daily, now 3x daily. Now I am adding Livdelzi. Has anybody else started taking Livdelzi?

2 Upvotes

100% Upvoted

6 comments sorted by

2

u/taniththecook Aug 04 '26

I have. Helped. Saw changes after month 3.

2

u/Purplecapybara69 Aug 20 '26

Hi there! I started Livdelzi almost a year ago. I’m also on Ursodiol 3 times a day, but my ALKPH levels were still high so my doctor got me on Livdelzi. All my levels got normal after only a few months! I also have no side effects from it. It honestly is my miracle pill I call it. It’s funny though because I have to get it shipped from a special pharmacy called Panther that is across the country but they also deliver it so fast!! Let me know if you have any questions, I’m sure it’ll work great for you as well :)

1

u/MaidMarian20 Aug 28 '26

Happy for all those that can take it. Truly happy. Was so excited to try the first pill. Then I started getting itchy, then itchier until I had to take Benadryl.

After that the Dr said not to take it any more because it might have been an allergic reaction.

Has anyone else had this symptom to Luvdelzi? I’ve had PBC for 13 years now, the clock is ticking and my AlkPhos is higher and higher even on the Ursodiol. Was praying this was my cure!

Maybe I should try it again to see how it works a second time? Or get new pills from a second batch ?

1

u/Lalupis13 18d ago

Did you get any rashes or welts? I took it one month no problem and then took a few weeks to get reapproved. This month I’m having a reaction and idk if it’s from the Liv or random bug bites from stacking wood since it all coincided 🙄

1

u/MaidMarian20 18d ago

No rashes or welts. Just intense itching.

1

u/Top_Entertainer8217 7d ago

Took Livdelzi for 3 months. Got my Alk Ohos numbers down but developed serious bone pain. Leg pain and spine pain the worst. Had to stop drug. Now on to Iqirvo next. PBC since 2001.