Labs

[Shulsey]

The numbers are still moving, seems like they're moving slower now. Still taking the Urso with Ocaliva 5mg. Waiting in the Ocaliva 10mg to see if they start moving more

[Ktltel]

Hope your feeling OK. I'm so happy you're numbers are looking better!!

Stella

[4pjx__]

At least they are headed in the right direction!

[Ottley3]

Hi! I am new but i read your story. It's so good that the numbers are going down. I know it is frustrating and i feel the same way but when the numbers are smaller the movement will be too. I admire your positive attitude and am grateful to you for sharing. Wishing you luck with the 10 mg Ocaliva.

[Nanajo1962]

Good news..

[DCMurphy]

Glad to see you're responding so well to the Ocaliva. I'm about six weeks into mine, in addition to Urso, and hoping to see the same result.

[LindaVillanova]

Great news. I look forward to your updates!

[Shulsey]

I just got off of the phone with Accredo Specialty Pharmacy. I'll get a call on Monday to set up the delivery time for the Ocaliva 10mg. I should be alternating the 5mg with the 10mg by next Friday. Fingers crossed the itching stays like it is. It's minimal at the moment, but when I get the break through itch, it's awful.

Thank you for all the positive comments. I just ❤️ my PBC family😁

Stay strong❣️

Shannon

[Sachin1234]

I don't think you have stage 4 pbc.. your hepatic panel is normal except alp which is expected..I thought stage 4 pbc have abnormal albumin, total bili and debilitated!

So happy for you and keep improving 👍🏼

Your results shows new medicine oclivia works fine👍🏼👍🏼👍🏼

[Shulsey in reply to Sachin1234]

Stage 4 is also cirrhosis with varicies. I wish you were right Sachin1234, that would be awesome. Unfortunately this isn't the case. I see my GI on Tuesday & back to Indy to see my heptologist Sept 25th. I will ask both about this.

Thank you for your thoughts.

Stay strong❣️

Shannon

[Sachin1234 in reply to Shulsey]

Would you aske one more thing for me, please ? Is bladder inflammation can be related to pbc 🙏

[Shulsey in reply to Sachin1234]

I sure can🙂.

[Sachin1234 in reply to Shulsey]

🤗

[Shulsey in reply to Sachin1234]

Sachin1234, your question has me wondering about my past numbers. So, I sent my heptologist the question of my being at stage 4. Plus, I looked back into my lab results from a year or so ago & my numbers have not ever been this normal. I think he'll send me a reply next week indicating the positive progress that the Urso/ocaliva combination is working🙂. I've had issues with my digestive system my entire adult life. First they thought it was my gallbladder. I had it removed at 19 years old. Then they diagnosed me with something else Im not really fond of talking about (i was 25). I took 6 months worth of treatments that made me extremely sick. Found out that was not the case. More tests & more hospital stays. I was given a diagnosis at age 36ish of PBC. Went into the ER for unrelated lady problems & was informed that my ALK Phos was over 2000. I was hospitalized for more tests & a liver biopsy, which was not my first biopsy. This is great news about my numbers being this great. Im thankful for all who volunteered with the trial study of Ocaliva. I wish they could find something to help with the fatigue though. I have fallen asleep three times already today🙄. Can't seem to shake it.

[Sachin1234 in reply to Shulsey]

I also have a digestive problem like trouble digesting fatty, milky, and sweet stuff, now I know, that is all related to pbc!

Do check your lab work with dr. or redo all the lab works one more time just to make sure!

As I said, your liver panel looks very healthy!

For fatigue: eat lots of veggies and if you can do light exercises!

I get one or two fatigue in a day but they don't stay long tho which is very good 😊

[Shulsey]

Yes, the numbers look great, but only started getting to this normalcy since starting Ocaliva. I go back for the same labs in two weeks. My hep had a standing order placed for the hepatic panel every two weeks for six weeks, then every month after that as long as my numbers keep going in the proper direction. Between my GI & my heptologist, I feel that they've always stayed on top of things. I truly appreciate your concern😊

[Mary2017 in reply to Shulsey]

Shulsey,

I live in southern Indiana and would like to find another doctor as I still have not been prescribed Urso or Ocaliva. I went back to my doctor but saw the nurse practitioner and she said he had written in his notes that he didn't want to prescribe Urso do to high mortality rate. Well I am getting worse by the day with swelling in my abdomen, legs and feet and I'm jaundiced and extremely fatigued. I would like to get an appointment st IU med center but don't know where to start or how to go about it. Do you have any suggestions?

[Shulsey in reply to Mary2017]

I see Dr Howard Masuoka at Indiana university. He's absolutely great & very educated in PBC. Not sure who you see but they obviously have no clue what they're saying. You sound to be in late stage PBC, like myself. Please message me your email & I can send you his information. Urso is the first thing that is prescribed to get the levels of your ALK Phos to lower. With the swelling in the hands, feet & abdomen is not good at all. Please message me❤️

[EileenUSA]

Prayers for you to continue these stabilized levels. I'm joining the team to cheer you on.