Above is my baseline (1st row up and down). And then two months on Ocaliva. So, in the past two months on Ocaliva majority of numbers look good. But then they always were. Just my Alk-Phos has been routinely elevated. But on Ocaliva it seems to be going up. Not down😔. Now.. even my "bodily solids" are changing color to this light taupe color. What's that about?? But I feel ok. Just a bit tired easily. Interested to see what my Hep says.
*Here's Joel and me at a religious class we were privileged to attend late last month. It sure keeps me anchored in this crazy life.❤🙋
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Ktltel
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Hi my dear, I think you need more time on ocaliva to see it’s effect. I’m sure the best will happen after couple of month stayiny on ocaliva. And about discoloration, As well I know it must be related to high levels of direct bilirubin, but yours is normal. Isn’t it? ( bil: 0,3?)
Great photo of you both, glad to see Joel looks well. You were worried for him a little while ago so I hope things are on the mend for him. I am wondering how long you have to wait until you see the hepatologist? As you say the numbers are looking better except the alkaline phosphatase. Are you still taking the ursodeoxycholic acid as well? Let us know how you get on.
Thank you, yes. I'm still on URSO as well. Everyone I've talked to or have read about, has noted that after starting Ocaliva their numbers either showed marked improvement or.... not, (especially their Alk-phos) within 2 to 3 weeks. Some even sooner. I realize everyone is different. But for me, as you can see, my Alk-Phos is climbing. My GI called and said "Well, it looks like we're going the wrong direction here. Better speak to your hepatologist."
So, my hep is getting faxed those numbers today. I'll speak to his nurse tomorrow probably. My worry is that I already have mild fibrosis. I really want to slow that down somehow.
Great pic! I know that must be so frustrating to watch your ALP continue to go up🙁I hope your hepatologist can give you some guidance. I've read some success stories of benzafibrate lowering ALP. Maybe ask about that?
It’s a beautiful picture thank you for sharing. I wouldn’t worry too much your numbers are fantastic. My numbers are terrible and I’m still the lowest number possible on risk scoring. I’ve been doing a lot of research on the minds ability to heal the body. Just stay positive and try not to focus on it so much. I’ve been able to continue to do everything I love including intense cardio classes, and many other things by deciding I was going to leave my sick person behind and be a new person. It changed my whole outlook and my numbers improved! If you have Netflix, great documentary called Heal. It doesn’t address PBC specifically but does talk some about autoimmune disorders .
No not yet. I called the doctor and his nurse is supposed to call me back. Still waiting to hear from them. You can only leave one message. I emailed her too.
I’m now taking prednisone and budesonide for my new diagnosis. My dr said budesonide is often used with pbc. I have microscopic colitis as well. The colitis isn’t that bad. But it sure gave me a stomach ach. My dr also said that he doesn’t start worrying about the alk until it goes over 200 range. I had my apt in Jacksonville and had my first fibroscan and another altrasound. I really think that you are doing ok Stella. The stress of not having normal enzymes with this disease is concerning as it is.
I sure keep us all in my prayers Jen. ❤❤Thank you!
Lovely couple! Stella, your AlkP remains under 200 which is acceptable and the rate of increase is declining. So maybe it is on the turn to go down further. Just a Happy Easter thought to you.
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Taken off Ocaliva today. 
Ocaliva and weight gain.
Side effects of Ocaliva
