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Is Anyone On Any Of The New PBC Medications? How Is It? And Is Anyone Else In Stage 4?

A myPBCteam Member asked a question 💭
Mundelein, IL

I have been on Urso for several years and then started taking Ocaliva with the Urso a couple of years ago. I was in stage 3 and in the last couple of weeks had an ultra sound done and the result came back as the beginning of stage 4. I am now getting a biopsy done. I go to doctor every 6 mos.with new blood tests. I have NO symptoms *Thank God*! And all of my labs are Good. Several years ago during a yearly exam I had my blood drawn and my Alk.Phos. was Very high. Urso helped bring it down… read more

December 4, 2024
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A myPBCteam Member

My Alk phos score is 130. My meld score is 6 I feel good. No itch. I moved to stage 4 , 6 months ago and was diagnosed 20 years ago. Our bile can’t break down fats except for olive oil. Avocado oil and MCT oil. I stay away from bad fats like margarine , crisco, fatty meats, etc. I drink a small bottle of kefir twice a day. Low sugar, low fat. We tend to lose bacteria in our gut. Keep my salt intake at around 1500 mg. I eat 60 to 80 grams of protein daily. Fresh fruits and vegetables, unsalted nuts for a snack. Eat small meals. I work out 3 times a week, plus do chores.
I am on 350 Urso twice a day. My symptoms are dry eyes and mouth, mild bloating
My weight is good. I hope I have another 20 to 25 years. Life is good.

December 19, 2024
A myPBCteam Member

Hi Joyce
You and I are in the same stage. I am only taking Urso at this time. I get checked every 6 months. It is my understanding when and if our Alk Phos goes above 200 then the second medication is given. So far Urso is still working for me and my numbers are down. I eat totally clean and organic. No alcohol. I drink kefir daily for my digestive tract. So far I have made it to 70. Best wishes on your journey.

December 11, 2024
A myPBCteam Member

It sounds like you're managing your PBC well with Urso and Ocaliva, and it's great to hear that you have no symptoms and good lab results! The progression to stage 4 can feel concerning, but regular monitoring and your proactive approach with your doctor are key. Newer medications like PPAR agonists (e.g., Elafibranor and Show Full Answer

It sounds like you're managing your PBC well with Urso and Ocaliva, and it's great to hear that you have no symptoms and good lab results! The progression to stage 4 can feel concerning, but regular monitoring and your proactive approach with your doctor are key. Newer medications like PPAR agonists (e.g., Elafibranor and Seladelpar) have shown promise for those who don't respond fully to traditional treatments. You might want to discuss these options with your doctor. Stay strong!

December 4, 2024
A myPBCteam Member

I’m on Urso last 2 1/2 years. I’m stable. No new meds offered to me ~Labs are good.

December 5, 2024
A myPBCteam Member

Hi Joyce, I two am stage 4. My blood work is not good. I take ursodol cellcept ( anti rejection drug) I take cholesterol meds for my liver vitamin d3 b12 vitamin a I get an injection 1 a year for step. I take a lot more this is what I know off hand. I’m up for a transplant. I see the liver surgeon Feb 6

8 hours ago

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