I had a recheck on my labs and everything is finally in normal range!
ALP-89, ALT/AST-both 19. Woot! Woot!
So very thankful that I responded to Urso fairly quickly as my ALP was around 200 when diagnosed. However, I still have concerns about the fibrosis continuing even with good labs. And like many others on here, I’m not 100% sure what stage I’m at, but feel like it’s early. How often is everyone getting scans or MREs to monitor disease progression once your labs were in normal range? And are there other tests I should ask about? I feel like my hepatologist may just tell me to come back in a year, but I’d like some assurance before that.
Thanks!
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HealthyChik
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Hi. Following this post. I was recently diagnosed at Mayo this last week. I asked specifically about the correlation between ‘good labs’ meaning that levels are in target range and the damage that is being done. My doctor told me that good labs, in range has a direct coorelation to less fibrosis. They also told me that when levels come into range, it may mean that the pbc has become inactive. I feel like I’ve read posts from some though that have experienced something different and feel like I’m not sure what to believe. There are others far more educated than me on this forum and I hope they chime in here I do know based on my recent Fibroscan that I’m stage 0-1, and ultrasound showed no inflammation. They said Fibroscan and annual ultrasound moving forward. For now, I’m trying to find peace with what my doctors told me.
Thank you for responding. It's great that yours was caught at an early stage and Mayo has a great reputation so I'd be confident in what they told you. I feel the same way about everything you have said and I don’t mean to come across as a Negative Nancy as I am so thankful for where I am. It could be so much worse, but I just want to be sure I have all the knowledge I can, so I can ask better questions and be proactive. I too have read about others who still seem to be progressing even with good labs. I also strongly believe that staging is often ambiguous and there seems to be a lot of variation among the different imaging tests. With that being said, I am choosing to go with my MRE results (F0-F1)and hopefully stick to that same test for the next time I’m monitored. I feel like so much is still unknown about PBC and we definitely have to advocate for ourselves. Luckily I have a great Hepatologist that doesn’t mind answering all my crazy questions🤪I have an appointment coming up in April and will let you know if his explanation is any different from what you were told.
I completely understand wanting to know everything about this disease and it feels like once I think I’m starting to understand it all, there is someone with a different experience. Here’s to hoping my doctors are right about the correlation!
I feel as though I have seen folks reporting that "even with" normal or close to normal LFT's they find out that they have more advanced fibrosis etc.,
Now of course it's good to have best levels possible regardless (and I'll celebrate them, believe me!)
but I also am not sure about a direct correlation between lab levels and disease activity, scarring etc... Hope others chime in.
My hepatologist told me a sonogram every couple of years. He did a fibroscan last year because I asked him about it. I think how often depends on your history & labs. I see him every 3 months.
Last appointment, I asked him how do we know what the current state is vs. before the urso & he said, we don’t know unless we do a biopsy and compare it to the original biopsy. But based on labs, we know the pbc is stable. Alk phos is key.
We do a bone density test every couple of years. I did one 2 years ago & before that, one in 2014. We test for Vitamin D. Every now & then he also checks the TSH for thyroid. Many PBC patients also have thyroid issues. So he checks.
In addition to the hepatologist, I see my primary care physician for an annual physical & she runs a very comprehensive set of labs including folate, B12 levels etc.
Yes..this helps. I have been going every 3 months as well, but thought he might push my appointments out further due to my labs being normal now. He has always stressed the obvious importance of my labs trending down and did explain that's how you slow the progression.. especially by keeping ALP within normal range. I'm not going to worry too much about it, but I will ask why some still progress with good labs. And since you mentioned the vitamin D, I'm sure mine is probably still low.. however, I do seem to feel better since starting the supplement. I'll get that rechecked next month. Hope all is well with you💕😊
I think he will probably want to keep tabs on you every 3 months. You still need to monitor the labs. Post his response to you on your questions after you see him.
I too responded well to Urso after not being diagnosed correctly for 4 years. My numbers were real high and like many who find out about this suddenly, it really freaked me out.
They did a liver biopsy in 2015 and I was Stage 2. I was petrified. They put my on Urso and saw me every 3 months. When my numbers decreased to normal in 2017 I was seen twice a year, now once a year. My recent fibroscan showed my liver was healing and looked normal albeit, they then said I had fatty liver disease so this at times seems like an endless battle.
I am in AZ and not covered for Mayo but went to St. Joes hospital for liver disease. I have great Dr. who moved to the Liver Institute so I go there to see him until he retires and then not sure if I will go back to St. Joe's or stay where I am.
I don't think about my disease everyday anymore and just live my life.
Thanks for replying. That is great news about your improved fibroscan and so encouraging! When I was first diagnosed I was freaked out too. It hasn’t been a year yet for me, but I’m so much more comfortable with it than I was. I don't have a fatty liver, but I've had 2 different staging results (Fibroscan in September showed F2-F3 and in January a MRE showed F0-F1). My doctor feels like the MRE is more accurate, but I can't help but wonder. I love this forum because you get such a better understanding of PBC and how it affects people and I really feel for those who look good via labs, but continue to progress rather quickly. Although my 2nd scan results were improved (or maybe I should say...more accurate), it just makes me wonder why it happens. As with many diseases, I guess we all have different paths. I hope we both continue to do well and here's to a long healthy life😊💕
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