New Biopsy report: The submitted biopsy does not have any diagnostic features of primary biliary cirrhosis

[Komiko]

I was diagnosed in 2010 after elevated labs and AMA. Biopsy from 2010 states:

Morphologic features consistant with an early stage of primary biliary cirrhosis (stage 1 of possible 4). Presence of periductal granulomas and small duct epithelial damage. Reticulin stain reveals clumping of reticulin fibers around necrotic liver cells. All other stains normal.

I have been on Urso this whole time. My labs have been normal except for one outlier. I had another biopsy (my choice) to check for progression. My new biopsy states:

Focal nonspecific inflammation in the portal areas, without increase in periportal fibrous connective tissue, there are no diagnostic histologic features of cirrhosis or hepatitis, all stains normal (including Reticulin stain). The submitted biopsy does not have any diagnostic features of primary biliary cirrhosis.

I am still AMA positive.

While this is great news for me it leaves me with so many questions. Anyone else ever have a followup biopsy that revealed a reversal of damage?

[4pjx__]

Oh happy day! This is great news for you. I am hoping for improved results myself. I have heard of this happening but I'm not sure where I heard it. xx

Pam

[Hidden]

Biopsies are highly subjective to interpretation depending on the pathologist interpreting it. Was your biopsy analyzed by the same pathologist?

Your questions are valid & you should schedule time with the doctor who is managing this for you to have it explained.

[Komiko in reply to Hidden]

yes same pathologist analyzed both biopsies, I will talk with my doc, was just wondering if anyone else ever had this kind of report back.

[Hidden in reply to Komiko]

The liver is a big organ. Hence, if the specimens were taken from different locations, results might differ. Having said that, I would be curious to what the pathologist or your doctor tells you on this. If your condition was improved or "cured", that is just uplifting news for everyone on this site.

[Komiko in reply to Hidden]

Yes I understand about how a random sample could possibly not include a damaged area. He did say my condition was improved. That was before I got to see the pathology report. I am preparing more questions for him. I was told to continue the Urso and see him in a year.

[Hidden in reply to Komiko]

Great! Let us know what he says! I didn't know the condition can be improved; thought urso only delays the disease progression.

Can you ask what exactly "improved" means? Very happy for you!

[Komiko in reply to Hidden]

Improved means that I had a histological response to the Urso that was reflected in my biopsy. I still have disease but my liver is not suffering any damage right now. My LFT's still run along mid-high of normal. I wasn't aware that Urso could help reverse liver damage, apparently it does

[Hidden in reply to Komiko]

Will you see him before the year just to get answers to your questions?

[Komiko in reply to Hidden]

I spoke to him today online. He didn't answer all my questions here's what he said:

"Use of ursodiol in patients with PBC is reported to improve liver enzymes as well as liver histology. So it would appear that you are responding nicely to treatment. However, If you would like a second opinion from Duke or UNC I would be happy to make that referral. We would like to get both liver biopsies for them to review. Please let me know how you would like to proceed.'

When first diagnosed I went to UNC Chapel Hill Liver Clinic and saw a Doctor there. First visit was great, very informative. Next year when I saw him, he didn't even have my records, knew nothing about me...it was a waste of time so I never went back. Considering a visit to Duke.

[Hidden in reply to Komiko]

I vote for Duke for you as well!

[Hidden in reply to Komiko]

Let us know what they say after you go. Thx.

[Ballymahon2]

My tests have been inconclusive for pbc my hepatologist started me on urso for 3 months to see if blood levels come down after the 3 months i will be looking for more tests and more definitive answers i do not want to stay on urso if i dont have pbc thanks for sharing that with us

[Komiko in reply to Ballymahon2]

I don't want to take Urso either. That said it did have almost immediate improvement in my blood work when I started taking it. When first diagnosed my eosinophils were elevated also, they and my LFT's were in normal range within 2 months. I always wondered about elevated eosinophils and their relation to this disease my research indicated a link between PBC & elevated Eos although I still don't understand it completely. Urso is so expensive now. When I first started taking it retail price for 90 pills was $24. 3 years later is was $260. I'm looking to go on Medicare in the next year or two. Urso is a tier 3 medication in the plans I looked at which will cost between $40-60 per month,

[Ballymahon2 in reply to Komiko]

Here in ireland urso costs 40 euro for a months supply which is 40 dollars so its not expensive i am glad urso worked for you i have been taking it for a week and so far so good no side effects hope my bloods impove in 3 months time when i am due another blood test

Thanks

[Ballymahon2]

Will you still have to take urso

[Komiko in reply to Ballymahon2]

Yes. I did speak with my doctor. He said that urso has been known to have a positive effect on liver histology, hence my good biopsy results. He said I have responded very well to urso but must keep taking it. I'm still AMA M2 positive which means I still have disease. He also said he would refer me to an expert at Duke University Hospital if I wanted to pursue my questions further. Debating now if I want to do that.

[Ballymahon2 in reply to Komiko]

Thats good to know that urso has worked well for you and you are getting good results

I have just started urso and my first blood tests will be done in 3 months time

Would be good to see the expert at duke university hosp

[teddybear7]

Doesn't it depend where they take the sample from you could be ok in one area but not in another. Sometimes it's so confusing this thing. X

[Komiko in reply to teddybear7]

Yes from what I understand it is possible.