Choice

[Zelda5]

My Hepatologist is giving me the choice if I want to take Urso. I have a fatty liver too. And my Alp is high again this month and was high last year for several months. He said I could take it now or lose weight and test again in two months. I'm not sure what to do. I am also Ama m2 positive. Last month my all my liver enzymes were normal. It fluctuates some. Any advice?

[Stub007]

I am 84 and have stage 2 PBC; I have taken two 500 mg Ursodiol pills for the last four years with no known problems. My liver function is “normal.” I have a wonderful, active life.

I would consult with a physician whom I trust and go with her/his advice.

All the best,

Don

[Michi1]

PBC causes the microscopic bile ducts to be pinched or bent, cholesterol clogs them, and then bile movement stops and they die. The backed up bile causes scarring which is, by its definition, cirrhosis. Over time as this happens over and over your liver fails. If your ALP is high, it means bile isn’t moving through your liver as fast as it should. It is my understanding Urso affects the consistency of your bile, making it more easily able to move. It also breaks down the cholesterol getting built up in your bile ducts. That alone will help prevent liver damage. There is newer research showing that people with PBC have some defining characteristics in their microbiome, and Urso helps bring the microbiome toward a more healthy balance.

I’m all about holistic health and went 6 months with my hepatologist doing monthly blood testing on a raw foods mostly veggie diet. My ALP went up in a straight line to as high as 630! Urso brought my ALP close to normal within a year and for the last 5 years it has been normal. For the last 2 it has been at the low end of normal.

I’ve continued with the healthier eating (more along the lines of mediterranean Diet and gluten free. My fibroscan scores show the damage is being reversed, having gone from 8.2 to 3.9. The doctors told me the goal was to stay the same or progress as slowly as possible. SO I plan to keep doing what I’m doing, including the Urso.

Everyone is different. If you want to know more about the nutritional and lifestyle changes I made, message me and we can set up a call.

[OdinsMom]

WOW just WOW . Can't believe that any hep who believes you have PBC would give you that option! Weight loss won't affect PBC but urso will slow it and prolong life if you're a responder. Urso is a bile acid, not considered a "harsh drug" by any measure. Is your hep saying they don't know if you have PBC? If they are unsure of their diagnosis then do a biopsy but don't delay treatment.

[Terri-Lynn]

Zelda5,

It's important to start taking the Urso medication and try to lose weight at the same time to get your liver test results going in the right direction.

Losing weight is no joke and trust me when I say, I've been struggling with my weight for 20+ years. During my annual exam 1 1/2 yrs ago, I discussed my weight with my primary physician. Together, we set up a plan moving forward which would encompass me writing down everything I ate, my weight, how I felt, exercise, BP, fluid intake (what the fluid was). She agreed to start me in Phentermine at a low dosage to give me a jump start. I've now lost 45 lbs in 1 yr and still have a long way to go but feel much better too.

The best part is having my clothes literally fall off me! I've had almost everything taken in and have had to buy some new things too.

My test result show no elevated liver and my A1C is 5.8.

I love to cook and eat so have tried to eat only fresh/frozen 'real' food without any preservatives. I also shortened my window to eat to 16 hrs no food and eat only during the 8 hrs. I still use butter to flavor up my dishes but it's a much smaller amount. Olive oil is my go to but if cooking anything at a hotter burn time, I usually switch to peanut or canola oil.

I haven't had any side affects to the Urso but some people have.

I exercise 4-5 days weekly with Pilates, riding my Peloton, and walking my new puppy I adopted in Dec 2022. Even small amounts of walking with him has increased my metabolism.

All of this can be overwhelming. Once you come out from the covers, it's just taking 1 step at a time. You are not alone. Most of us on this blog have had similar challenges. Taking the initial step is the hardest for us all.

Sending you support and know we're here for you.

Warm regards, Terri

[JeanAZ]

Hi Zelda5, I was on the Urso Dosage study in the Mid ‘90’s. And have been on Urso for all those 28 yrs. It’s dosed by weight. Urso is a very non side effective drug. What it essentially does is slow the progression of PBC down. With such great labs your probably not yet ready for Ocaliva yet. With in the study we were able to get two doses 250 mg. And 500 mg. So there’s a tighter application of maintenance. Try it for a time frame and see if you can work with it. It works great with Fatty Liver. A lot of us have Fatty Liver as well as PBC. I would get on a good Plant Based diet with docs help to manage weight. just my Humble opinion. I’ve all ready lost 37 lbs on it 2 yrs.

Feel free to get back with me with ?’s

Hugs Jean AZ

[OdinsMom]

Take it if you want to slow your PBC.