First Post and a Thank You: First off, I'd... - PBC Foundation

PBC Foundation

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First Post and a Thank You


First off, I'd like to thank each of you for your posts. I have learned more from reading your stories, questions, and responses than all other sources combined. You have helped me in knowing what to ask my doctors, and how to answer questions from family and friends.

With all of that in mind, I'd like to share my story in case it may help someone else.

I came to learn that I have PBC like so many others. Last spring ( May) I had some blood work done to ck on cholesterol levels. (I take a statin to keep cholesterol low) I have been on the medication for several years and have these tests done 2x/year to ck levels and monitor if my liver may be affected.

The results showed mildly elevated liver enzymes (ALT and AST), so i stopped taking the statin for several months, at which time another round of tests showed the same. the numbers were low enough that there was no alarm, and the doctor thought it might be a case of fatty liver. He sent me to have an ultrasound which revealed nothing. Including a missing Gall Bladder that was removed about 5 years ago This was in the Sept/October timeframe. So my Dr. then sent me to a Heptologist, who ran a more in depth panel of blood tests.

I then had an appointment with the heptologist in mid December to review the tests.

The ALT/AST remained slightly out of range, all other values squarely in range-including Bilirubin, Abumin and ALP. RIght in the middle of the normal range. The AMA results were positive but fairly low-indicating high probability of PBC. The Heptologist walked me through this initial diagnosis, explained what it is, etc. It was confounding and surprising to hear that I have an incurable disease. He told me about the treatment, and that I shouldn't worry because my liver was still functioning normaly and that we likely caught it very early.

He referred me to the hospital to have a biopsy (done in first week of January) to confirm diagnosis and stage the disease if the diagnosis was confirmed. During the follow-up visit with the Heptologist, I was told that my liver showed 'minimal' damage/evidence of PBC and the Dr. was optimistic that the progression could be greatly slowed and the damage was so minimal that it might be reversed. I was told to lose some weight, eat better, but no other restrictions other than no alcohol, which really stinks as I enjoy a cold beer or cocktail from time to time-especially during the warm summer months in the southern US.

My regular Dr. told me he has a few other patients with PBC who are doing well. He also mentioned how "Lucky" I am to be one of the small percent of PBCers who are men. Of course this was tongue-in-cheek, so I got a good laugh. I feel fortunate that he knows what PBC is, how it's tracked and how it's treated.

As I have no other symptoms I consider myself fortunate that this was discovered as part of my normal healthcare routine. Hopefully I'll continue to be symptom free for a long time.

I have been taking the URSO for nearly one month with no issues. Why is it so darned expensive? I have another blood test scheduled in a couple months. I guess this will now be part of the routine.

A few additional thoughts: I have found it interesting to learn about the differences in medical care between the US and UK and other locations. (I'm in the US)

For example:

Being given copies of Test results-seems to be an issue in UK? we have easy access to all of our healthcare records, and it is easy to interact with our providers via email/online portals (at least for me and my family).

Obtaining timely appointments is not an issue-including for specialists.

Aggressiveness using Biopsies to diagnose and stage. No question here to use the best avail procedure to aid in diagnosis and staging/tracking.

Travel insurance. I don't think we need that here-of course our Healthcare system isn't nationalized. My family has traveled internationally many times and have needed care on a couple occasions without issue. I will say that I plan on trying to squeeze more travel in sooner rather than later in case I become symptomatic at some point.

This site, and the PBC Foundation based in the UK, is the best site for for support and information that I have found. So I'd like to congratulate you-this community and association-for a job well done!

1 Reply

Hello MK3117

Welcome to our community and thank you for your informative and upbeat email. As you say without the PBC Foundation and Health Unlocked we would not have this great place to come and share and to gain knowledge from our fellow sufferers.

I also keep an eye on PBCers Organization in America and have been amazed at the cost of URSO, here in the UK we are fortunate to have a National Health Service which protects us from the vagaries of the pharmaceutical companies.

best wishes

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