12 week update on Ocaliva - plateau’ed.

[Ottley3]

Update on me. For reference I was diagnosed with PBC in March 2017. Went on urso which was helping but then plateaued over the summer. Started Ocaliva 11/13, at the lowest dose 5 mg/day. I was very nervous about it. Was really itchy weeks 2-4, it subsided and now comes and goes. In terms of blood work, I saw great improvement in first 6 weeks, over the next six it has plateaued - actually gone up a little. Is this normal? Does PBC “flare”? . I am disappointed by this but the big picture of improvement is good. Wondering if anyone else has experienced this kind of plateauing on ocaliva. Also wondering if the “twingey” feeling i’ve Been having for the last few weeks is somehow related to the levels not getting better. I see my doc on Thursday. As always, appreciate all insights and advice.

ALP March 2017 375, November 2017 274, December 2017 191, March 2018 195

ALT March 2017 207, November 2017 89, December 2017 67, March 2018 57

AST March 2017 139, November 2017 52, December 2017 39, March 2018 43

Thanks so much to all of you for your support!

Xo,

[ninjagirlwebb]

Your numbers look good & in right direction. Doesn’t matter if they fluctuate if within normal range. The alk phos under 200 is good...hepatologist told me for people with pbc, that is good. Don’t know what the range is for the other 2...but it is going down for most part. You should be fine.

[Ottley3 in reply to ninjagirlwebb]

🤗

[gwillistexas]

I’ve been on Ocaliva since October & last Lab in January things were still improving. This is my first 3 month span for lab as I was having them monthly & now it will be April. I’m anxious. Hope you do okay😊

[Ottley3 in reply to gwillistexas]

😍 thanks!

[Biddyb]

Hi, blood results look to be going in the right direction I think most of us get the yo-yo readings at times with no one seeming to know why. Mine do increase if on the odd occasion I have had a glass of wine which is only on special occasions. Most of us I think have flare ups which will show in the blood results if the timing co-inside. Can I ask are you in the UK ? Good news hope your progress continues

[Ottley3 in reply to Biddyb]

Thanks so much. I am in the USA.

[Shulsey]

Yes, I too had to start the Ocaliva. It's getting close to a year. There was great change at first. Then it started to slow, my body was adjusting. It seems to be typical for us with PBC to have our numbers slightly off. According to my heptologist it is the norm. Just a lovely part of our journey😉.

Stay Strong❣️

Shannon

[Ottley3 in reply to Shulsey]

Thank you!!!!!!

[LindaVillanova]

Hi there, I had similar results and have been on OCA since AUg. #s went down right away, stayed the same and went up slightly until last month when I had a big drop as well. Still not normal (double normal) but best I've been since Diagnosis . No itch for me and have doubled dose of OCA to 10mg last month.

[Ottley3 in reply to LindaVillanova]

Thank you!! So your big decrease was on the 10 mg?

[LindaVillanova in reply to Ottley3]

No it wasn’t - I haven’t had blood work done yet as just started 10mg a few weeks ago. Doc said there isn’t typically a big drop on 10 but I’m curious and hopeful. Next bloodwork a couple of months.

[Ottley3]

Update, i had a blood test a few weeks ago for supplemental disability insurance. I’m not optimistic for getting it, but i did see a little improvement in my blood levels! ALP 188 ALT 55 AST 35. Encouraged. My GGT was 133 which looked startlingly high but when i checked back it was in the 300s in September and over 1000 in January 2017. My cholesterol is up more so I’m worried about that but otherwise feel that Urso and Ocaliva are doing their job. Thanks to all who responded for their encouragement and advice. Next blood test is in June and fibroscan is in September. Definitely less itchy. Thanks again