OCA, labs & weight loss

[gwillistexas]

So, my ALP is down to 107 from 128 in October. That’s great but it’s a shame ALP doesn’t indicate the health of our liver. Also, has anyone experienced weight loss on OCA?

[Ballymahon2]

Great news

[gwillistexas in reply to Ballymahon2]

Thanks Aine😊

[Arlie]

Thats good gwill 🙏

[gwillistexas in reply to Arlie]

Thank you Arlie 😊. Hope you are doing much better🦋

[periwinkle88]

I don't know about ALP indicating the health of our livers, but I was told recently by my hepatologist that the level of ALP indicates how much damage is being done to our bile ducts. The higher the ALP the more damage is being done, is my understanding. So your relatively low recent lab result is great news!

[iagra in reply to periwinkle88]

I understood the same from my gastro about ALP. There is another important indicator - GGT.

[gwillistexas in reply to iagra]

iagra...GGT is one test I’ve never had. I feel sure when I see new Dr (hep) he will test it. 😊

[iagra in reply to gwillistexas]

Yes, make sure he includes it. It is an important test. Check this out: labtestsonline.org/tests/ga...

Urso moved it into a normal range for me, from pretty high before taking Urso.

All the best to you!

[gwillistexas in reply to iagra]

iagra...yes, labtestsonline is a link I visit regularly 😀 & have saved all the info I read on the different labs. I have the info on GGT too. This poor dr is in for a real treat with me🤣. He has no idea how proactive I am & how much I research.

Thank you & I hope you continue doing well🤗🦋

[iagra in reply to gwillistexas]

Thank you!

[claygi]

What’s interesting is that my ALP is in the normal range, last check it was 78, down from 128. However, the recent MRE I had showed I’m already stage 2-3 fibrosis. I’m on 900mg of URSO a day, no OCA.

[periwinkle88 in reply to claygi]

claygi Your current low ALP (78) may mean that your bile ducts are not currently being damaged much. Maybe your progression to stage 2-3 fibrosis occurred before you started URSO or before you were diagnosed? And now the URSO is working so there is less current damage happening to the bile ducts? Just speculating...

[claygi in reply to periwinkle88]

I think that is likely the scenario. I had abnormal liver enzymes starting in 2014, but normal AMA until mid 2016, and no real diagnosis until Feb of 2017, due to low positive AMA up until then. Started URSO that month. My ALP has never gone above 130, at its worst anyway.

I have considerable pain though, have for over two years. My liver aches and feels stiff line a basketball in my abdomen. My hepatologist at UCLA says livers “don’t hurt.” Well I’m here to say that they do.

In fact, I’ve been given disability due to the pain, and only work part time now.

[gwillistexas in reply to claygi]

claygi...my ALP was only slightly elevated in 2015. I guess Dr wasn’t alarmed so no further testing was done. ALP was normal in 2016 & in 2017 it was elevated again @ 248. Then he got busy with testing. I feel an ache sometimes but not often. It is my understanding, the liver actually has no nerve endings but the capsule which it is enveloped in, does. I don’t remember if you have had fibroscan?

[claygi in reply to gwillistexas]

No fibroscan because at UCLA the claim is that it is inferior technology. So he gave me an MRI with elastography instead, which showed stage 2-3 fibrosis and also a cm long lesion on my pancreas, and multiple swollen lymph nodes which are all nothing to worry about according to the hepatologist.

[gwillistexas in reply to claygi]

claygi...I’ll have to agree about fibroscan. I hope my dr doesn’t suggest another one. I might refuse it. He said even though I’m thin there could still be an inaccuracy.

[gwillistexas in reply to claygi]

claygi...same here. My labs have been normal for quite some time. I started OCA In September 2017. Numbers normalized quickly. I went from stage 2 fibrosis to stage 3 fibrosis in that year, according to fibroscan this past August. A bit discouraging 😊

[PBCRobert Partner in reply to claygi]

There are a number of factors here that are separate.

1) ALP tells us how much inflammation of bile ducts is happening now.

2) Histology tells us how much damage has happened till now, in the past. How much damage before you were diagnosed was already there?

[PBCRobert Partner]

The blood tests are an indication of different chemical reactions so no, they do not, as a rule, tell us function or health as such, they still tell us the processes going on.

e.g. Alk Phos is high when there is inflammation in bile duct cells (cholangiocytes)

ALT and AST are raised when there is more damage to liver cells (hepatocytes).

The more normal the numbers, the better our liver is on a day to day basis.

I am not aware of formal data for Urso but we know there was a small subset trial that showed OCA can improve histology, which is great news.

[gwillistexas in reply to PBCRobert]

Robert...Thank you. And I do understand. It’s just that when the ALP has been in normal range for several months, then you’re told fibrosis increased, it becomes s concern as to why. My first comment to my GI was OCA isn’t working in terms of keeping fibrosis to a minimum. So, that’s when he decided I should see a hepatologist. And I’m okay with that. I need an expert to step in. 😊🦋

[PBCRobert Partner in reply to gwillistexas]

It would be interesting to know your ALT/AST results.

[gwillistexas in reply to PBCRobert]

They’re perfect & have been for long time.

[PBCRobert Partner in reply to gwillistexas]

So it is true.... you are a mystery!!!!!! 😍

[gwillistexas in reply to PBCRobert]

When first diagnosed June 2017, AST was 46, ALT normal. November 2017 AST down to 38. ALT was high for first time @59. Both back to normal in January 2018. Normal ever since. Yes, I’m the fun one😂. 🦋

[Skypony in reply to PBCRobert]

Robert, on the subject of what our bloods indicate; typically IgM and GGT are also raised.

Do we know what information each of these gives us please?

[Sona_akb in reply to PBCRobert]

Dear Robert

If OCA can improve histology, is it good for me to take OCA beside urso?

I haven’t rechecked my labs after starting urso since 23days ago.

Please let us know if there’s every little thing which can make an improvement

[Sona_akb in reply to Sona_akb]

First row of test was:

Ast80 alt100 alp261 ggt195

[PBCRobert Partner in reply to Sona_akb]

Urso is the first medicine to take. If Urso dows not give us the result we want or need then clinicians will look at alternatives:

OCA

In some cases bezofibrates

In other cases clinical trials are worth considering

[claygi]

My ALT and AST have always been elevated, at least doubled, until I got on URSO, now they are normal.