I was diagnosed in 2016 and have been on URSO since then. Thought to have been in very early stages. Labs initially only slightly elevated (Alk phos and ALT) but quickly normalized. MRE (MRI with Elastography -thought to be more sensitive than fibroscan) 3/2016 showed no fibrosis only inflammation - stage 0-1.
In past month slight elevation of ALT-36 ( 20-32) and decrease in total protein 5.9 ( 6-8.5), all other labs normal. Had repeat MRI which shows overall fibrosis stage1-2 and focal areas stage 2-3
Am I considered a non responder now?? My hepatologist told me he thought it was unlikely I was ever going to progress. Very concerned about this degree of progression in 18 months. My understanding is this is a poor prognostic sign.
Should I ask about Oclavia?
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gallatracy
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How much do you trust your hepatologist's opinion? Was this a comment from your original consultation or recently. Maybe be worth asking about Ocaliva.
the answer is alt 36.Under urso the value must stay down .What dose of urso do u take?Are u taking 13-15 mg/kg?Maybe u don t take the right dose...If i was u i would take the highest dose of urso that is safe:apx 15 mg /kg for 3 month and after that repeat all tests......
Ummm, I been on urso 1200 since biopsy in 2013. My GI DR said I was at a very early stage, too. My blood work had went down to normal & has stayed there. Last November I started feeling sick & having pain so had US & MRI but still no answer why. Went a hepatologist who did a Elastography. Nothing was mentioned about all over or a focal point just that I'm stage 3 fibrosis & blood work still normal. Now, I too, am very concerned
I'm not sure what an MRE is but I had an Elastography which I'm told is like a fibroscan but better. The hepatologist said Ocaliva is only given if you just have PBC. He did consider it but after results came back that I'm stage 3 fibrosis believed to be from fatty liver, he said I'm not a candidate. IDK how that's so since he said it's still in a trail status when it sounds like on here it has been approved for awhile
Hi, I don't know how to answer or help with the above points and questions, as it is all beyond my frame of reference, and I think it needs expert help - or input from those who have been through such a scenario.
However, I do suggest that you check out the 'PBC Foundation' website - link at top of page or google 'PBC Foundation' (but don't bother with most other online stuff, as it's often way out of date). The 'PBC F' host this forum on 'HealthUnlocked' and they are wonderful. If you join - it's free - you get access to all their website, where they have assembled all of the latest research findings - especially on diagnosis. Also their trained advisors are lovely, you could email them or phone. But I do recommend reading around the site first.
Also, personally, I would want to see a leading hepatologist, preferably an actual PBC specialist, as here in the UK many Gastros and even general liver medics are not up-to-date on PBC diagnosis and treatment, as PBC is rare, but work on it has advanced so much in the past 10 years.
gallatracy...I feel your degree of concern. I’m out right scared myself. My fibrosis increased the last year on OCA. It’s not much but still a concern. I pray your dr will be on top of it & take you in the right direction. We tend to have concerns because it’s our health. But I feel most of our drs, being experienced, don’t get as alarmed as quickly as we do. But it’s still scary. I bet you will be just fine. Hugs☺️🦋
“But I feel most of our drs, being experienced, don’t get as alarmed as quickly as we do.”
This statement is right on point. I panic at the slightest thing & my doctor has to calm me. It is because we only know our own cases while they see a lot more patients & know what the focus should be. I am referencing the doctors who are well versed in pbc.
No matter, it is always something I am cognizant of that we have this incurable autoimmune condition & it is plenty scary. Some days it gripes me with fear. Other days, I am too tired of worrying & trust my doctors to manage it on my behalf. It takes a strong personality to deal with all this.
You’re so right. I think we fear the “unknown “ like we’ve never feared it before. I do. And as women, we want to fix everything. And when we can’t fix it, it drives us crazy😅
I also feel that the more educated we are with this disease, the more apt we are to be able to read between the lines. When I saw my GI’s NP in August she mentioned AIH & that it was most likely to affect women. So I’m thinking she & GI are considering this a possibility since my fibrosis increased & probably why they want me to see a hepatologist. I’m no fool!😀
i remember that i read somewere that urso will improve liver biochimie but the progresion will still continue.As u all, i am taking urso from 05.2017.Urso even took the nr of Ama under positive but now they ur up.I also have some small pain in the liver area.As u all , i think that the progresion is on.I am 35 y, man.The problem with this illness is that we do not have instead of urso and ocaliva any other treatment and a very big procentage are nonresponder to urso from the begining ....or they become nonresponder after a while....
Andrei...from what I’ve seen in discussion at the last PBC conference in Houston, benzofibrate is a consideration. Dr Robert Gish is comfortable enough with the findings, that he said he will probably start prescribing it to his patients.
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Normal Labs
PBC/AIH, early stage of fibrosis confused.
