Diagnosed around 5 years ago with PBC and was on 1500mg urso and nothing doing. After biopsy February I was told now stage 1 child’s cirrotic 😭 but NO symptoms like ZERO.
I’m very lucky to now be on Ocaliva - Obeticholic Acid 5mg daily
I started treatment on Monday 9th April and had my bloods done on Monday this week and saw my GP to go over my results.
My ALT is 48 (this is actually in the normal range! Whaaaat!?!) before treatment on new drug it was 131 🙌🏻
My cholesterol is down from 7.95 to 5.37 🙌🏻 (Not on any statins)
My alk phos is currently 328, pre treatment on new drug was 847 (highest it has been was 950) I know not in normal range but a third of what it was!
Extremely encouraging results!!!! I knew it was going to be good as I feel like a new person. I just got tired before but now I feel like ME.
Positive vibes going forward. I see my consultant on 21st June I’m expecting a high 5
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Alison2306
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Only itching a little my feet and hands but I’m coping with cooling sprays and keeping hydrated and moisturised. Happy tears from me and my doctor today she’s awesome and cares. I’m 35 this month and feel like a Weight has been lifted and I just need to keep doing what I’m doing xx
I’m so pleased as this was the last treatment for my consultant to try me on 🙌🏻 Only positive comments from me on ocaliva (Obeticholic acid). Kind of feel like I’ve won the lottery
Alison2306...I saw my NP Thursday. I shared with her that if my next fibroscan shows good results with little to no progression, I am hoping I can relax a little more. A year is a long wait to see if med is doing a good job. She said i don’t have to wait till September if I would like sooner. I’ll probably schedule for early August.
Happy news that you found something to help with your LFT's lowering. I was just reading about the side effects and was wondering if you have experiences any of them. I know you said hands and feet were a little itchy...maybe from the med, maybe from the PBC itself..hard to factor. I am allergic to URSO, so this sparked my interest. But I have to say, the listed symptoms are a little frightening to me. Not to say that PBC itself doesn't scare me, but sometimes I have to wonder, as Joan Osborne said in her song..."What if the cure is worse than the disease?" I wish you the best outcome on your journey with this. I know how good it feels to see better labs. Embrace your joy! Hopefully someday, research will find something to prevent this madness...probably when monkeys fly!
I gave all side effects list to my partner and put myself on a google ban. I really was at the point of I need to try this or this PBC will silently keep destroying my liver. I’m only 34 and last biopsy showed cirrhosis and classed as child’s stage 1.
I’ve never had any itching (lucky I guess) from my PBC only thing I’ve ever had was tiredness and not fatigue like others experience just super tired come 2pm in afternoon.
The itching of feet and hands kind of comes in waves and I would say it started 2 weeks into ocaliva treatment.
My GP couldn’t believe the difference in such a short period of time (8 weeks) my levels have been off the charts since 2014 some peaks and troughs but generally very very bad.
I gave my other half the list of side effects so I wasn’t thinking about it and waiting in a sense and when i didn’t feel normal i let him know. But so far 8 weeks in the itching is definitely subsiding. When it was bad I actually took the skin off of the top of my toes scratching!
Now it’s only if I get hot it effects my feet mainly.
I really appreciate that you took time to write back to me. I am very fortunate that I usually am asymptomatic of itching and fatigue. I sometime times wonder if it's my diet, lifestyle, bio-identical hormones, or what! but I'll take it, right! Anyway, as I said, I'm allergic to sulfa, so no URSO for this girl. But when I get LFT's back nd they are always high, reality sets back in. Believe it or not, I'll see my first Hepatologist next week since this all began over 21 years ago. G.I.'s have been seeing me, but I have never been staged. Well, I begged a G.I. for a Hep. referral and fought insurance for 3 months to see a guy here in AZ. So, I'm putting notes in my "GOD BOX" that this Hep. doc will grant me the privilege of a fiberscan. My biopsy did rule out everything els, and as suspected they diagnosed me with PBC. I sometimes wonder if this is a mis- diagnosis. I was very fatigued for years, and the itching was crazy. I too have lovely scars from scratching arms and legs...hate when the top of toes itch.
So again, thanks for the information and your time. I'm going to have to probably pass on the medication you found, as I am hyper-sensitive to most, but we'll se what the doc's here have to say. In the meanwhile, I'm finding a liver supplement and milk thistle are holding me at my normal high level. Hope your success continues to soar.
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Side effects of Ocaliva
Experiences of Ocaliva
