PBC diagnosis? AMA 125,1

[Cat1966]

Hi,

I am 55 year old.

In 2008 I had a self resolved Hep C, and the virus has never been present since, I had two tests in 2008 and one now, no virus, this takes chronic Hep C off the table.

I have my blood tests yearly (except 2019, 2020), everything was normal.

In November 2021 my ALT and AST were about 2,5 times elevated, and then the testing began.

US showed a homogeneous liver, Fibroscan 24,7, diagnosed cirrhosis, no fatty liver or alcohol.

MRI suspects cirrhosis (suggesting biopsy), majority of the biliary ducts are normal with mild biliary ductal dilation in the left lobe.

Blood test from 2 weeks ago showed ALT 208 and AST 247.

IgG 25. ( normal 15) and IgM 3.53 ( 3 normal)

With all my luck, I got COVID, and knowing that I have a liver issue went to the ER, ran the blood and my AST 81 and ALT 108, that is lower than 2 weeks ago.

Now I am home recovering from COVID ( day 4).

And today I received the tests for AMA 125,1 ( norm 24,9) and smooth muscle 47( norm 30)

This is PBC confirmed? My readings are jumping?

The bile ducts are normal on MRI?

I am on the waiting list with a hepatologist, no appointment yet. I am in Quebec, Canada, and everything in regard to Medicare takes forever. And if I wanted to go to a private hepatologist, there none exists, only through a system. In the meantime my liver is dying! with no underlying condition known.

I did due diligence on my end, went to private MRI, flew to another province for Fibroscan, had immunology tests in the US (these tests are still not ready for me in Quebec).

I ve been always a healthy eater, and since November I am on a liver disease diet (even though I don’t know the cause of it and the diet is better if based on the cause of the disease), no fried food, no white bread, pasta, only steamed and boiled. Not a drop of alcohol.

Now with all these results on hand and no doctors appointment, I am super stressed and helpless.

Did anybody have similarly experience, like all is normal and then BOOM, cirrhosis of the liver, the result are jumping and inconclusive?

I will really appreciate any comment, or sharing an experience, or advise in regard to all of the above.

Thank you!

[Tcmb50]

Oh my goodness, you have really been having a hard time. I don't feel equipped to give you the indepth advice about this that you need but I wanted to respond. I understand that the lack of a clear diagnosis is very worrying for you as you feel your health is failing. You really need to see a hepatologist and have all your questioned ready so you can get all the answers you need from an expert. More than likely things are not as bad as you think. It seems possible that you could be diagnosed with PBC with the elevated liver enzymes and positive AMA result. However you only mention Alt and Ast . Elevations in Alp and Ggt would be more important for PBC. I was told by a hepatologist that without an elevation in Alp, I would not be formally diagnosed or given Urso for PBC. You may have inflammation in your liver from PBC or from another cause and this could account for a high Fibroscan result. If you do receive a PBC diagnosis you will be treated with Urso which can help to stabilise the disease at any stage. I spoke with a lady who was diagnosed at cirrhosis stage and is still well 10 years later. I know it's easier said than done but try not to worry too much or think the worst until you get your appointment. Fingers crossed that will be soon. Take care.

[Cat1966 in reply to Tcmb50]

Hi,Thank you for your reply!

A little update,While still waiting to be seen by any specialist, I had a chat with a person ( a doctor himself) who happened to have PCB.

He suggested I have an overlap of AIH/PCB, and that I should ask my GP for a prescription for urso to begin with. He also recommended Heptral manufactured by Abbot.

Have you heard anything about Heptlar for PCB?

[Abstractionist]

If your finances allow it I suggest you make an appointment with a good hepatologist in the US. Go to Boston or NY. It is your health and future and worth more than a trip to Paris. With a positive AMA you have PBC likely caused by previous infection. You can get

Tauroursodeoxycholic acid without prescription on the internet. It is the taurine conjugate of Urso but may even be better. It is being investigated. Anyway, there is no downside. Read about it.

Do not delay. You can halt the progress.

Good luck.

[Cat1966 in reply to Abstractionist]

I was looking into this as well, especially Boston is just few hours away. I looked the hepatologists up on google, and they all look perfect on paper. I don’t feel like going to see just anyone.

If I have to travel to another country to see a doctor, I would like to go to one whose specialty is something close to liver cirrhosis caused by autoimmune disorder.

So I am still looking and asking around.

I ll definitely do some research on

Tauroursodeoxycholic acid as an alternative.

How long have you had PBC?

In my case, even though I have no symptoms, based on the tests, I have it probably for about 10 years.

[Abstractionist in reply to Cat1966]

I have only known about it for under 2 years. I had vague discomfort under my right rib cage and asked my rheumatologist to get bloods. I am an MD. Did my research after finding out my liver enzymes were ridiculously high. Made one unsatisfactory choice of hepatologist, who made the diagnosis and started treatment. Now after asking around among other specialists, I am seeing superb specialist whose name is Dr. Leona Kim-Schluger at Mt. Sinai in. New York. She is super smart, attentive, responds to emails quickly and is a specialist in this area. Obviously Boston has excellent docs. Just look at the Harvard hospital specialists online and pick one and get an appointment or call and make an appointment with my doc. It's important to start treating as soon as you can as I'm sure you know. Feel free to reach out again.

All the best.

[Cat1966 in reply to Abstractionist]

Finding the right doctor is the key, Are you in the US?

As I am in Montréal, Canada, and to get treatment here is a quest.

I personally did all due diligence on my end.

After the enzymes were slightly elevated in November, and the ultra scan showed problems with my liver, I had to fly to Toronto for Fibroscan, and even my immunology blood work, I had to do in the States (it was requested by my doctor here, but for some reason it is still not ready. If I had not done it, I would still have been waiting for the results),

MRI I had to do privately as the waiting list to do it through the system is up to six months.

New York is not too far from Montréal.

And it does worth to walk an extra mile for the things that are important, like your health.

Thank you so much for giving the name of your doctor!, it is always better when someone could recommend one based on own experiences.

Do I just call to Mt. Sinai and ask for an appointment with Dr. Leona Kim-Schluger?

Do you think she would do a virtual rendezvous to start if i sent her all my tests?

May I ask what happened wth the first hepatologist, wrong diagnosis and wrong treatment?

I apologize for a myriad of questions.

And thank you again for all the support.

Elena.

[Abstractionist in reply to Cat1966]

Dear Elena,I had no idea the Canadian health care system was so problematic. At least you aren't having school shootings and crazy people believing conspiracy theories!

Anyway, yes I live in the US, currently in New Jersey but pre pandemic in New York during the week. You can go on the Mt. Sinai website and put in her name. Then you can request an appointment, and I think you can request a virtual visit which they schedule at different times. The first doctor didn't even do a cursory physical exam and didn't request repeat bloods after three months on Urso. I had to get hold of her PA and ask him to order the bloods. That was the end of my seeing her. PBC is treatable, but liver damage doesn't recover, and the sooner you're treated the better. I started taking the taurine conjugate with Urso, I used to do research on taurine very long ago, and the data on its benefits is astounding. I am not a holistic sort, more traditional medicine, but if I were you I'd start on the conjugate as soon as I could and reach out to Dr. Kim-Schluger. She is lovely and at the very least she can help you find someone good in Boston. Although flying to NY every 6 months may be worth it.

My email is: [e-mail] if you want to communicate more directly. I'm very big on being pro- active and not settling for poor care. Sometimes it's a lot of effort but worth it.

Leslie

[Cat1966 in reply to Abstractionist]

Hello Leslie,

Apparently Quebec is known for the highest tax rate, and the worth Medicare in Canada, it is not as bad in the other provinces. On the other hand, it is still quite safe, and it is hard to have the best of both worlds.

Monday, I ll call Mt. Sinai, and try to get an appointment ASAP.

As based on my test results, I have an overlap of AIH and PBC, and the liver is cirrhotic.

I hope with right diet and a proper treatment I could improve it at least a bit.

I had a glance at few research articles about the effects of ursodeoxycholic acid and taurine on serum liver enzymes and bile acids in chronic hepatitis. It is very interesting.

At what dosage do you take taurine?

Is there a a special diet you follow as well?

Thank you for your email, I ll email you direct going forward.

My email: [e-mail]

[Abstractionist in reply to Cat1966]

My suggestion is that you order tauroursodeoxycholic acid (TUDCA). It comes as 500mg. Capsules. The dose is the same as Ursodiol. 13-15 mg/kg/ day. I weigh 112lbs. So I take 750 mg per day in a divided dose. I am retaking a combination. But since you don't have Urso prescribed you'd take that of tudca. I also have autoimmune hepatitis with OBC. Common. So I have positive ANA and AMA. All liver enzymes are back to normal range except alk phos, which is coming down but not normal yet. Hopefully you'll be able to start addressing this soon.

[Cat1966 in reply to Abstractionist]

Thank you so much!

Is there a brand that you would recommend?

Are you taking anything for AIH? Prednisone or steroids?

In my case, as of today, I don’t have ALP elevated, only AST and AFT slightly, based on the last blood test taken three weeks ago.

I ll take another test next week, as I ve just had COVID, I am vaccinated 2x Pfizer plus one Pfizer booster.

I went on mount Sinai hepatology site and requested an appointment. I put an address for the US company i am working as well, and as insurance-other. Let’s see what they reply.

I also did some reading on S-adenosyl-L-methionine (SAMe), also known as Heptral brand name by Abbot. It is by prescription in Europe, and is considered a supplement in North America. As per the studies, it helps to normalize liver function and enzymes as well

There was a trial on this done at mt Sinai as well, I believe I read.

Have you heard about this by any chance?

I ll email you few links about this.

[Abstractionist]

Yes I have heard about Heptral but since I am responding to Urso so far I haven't had need to explore it. I purchased BioBody TUDCA, but have no point of comparison with other brands. It seemed like the best value and I liked the their website.

I do not take steroids and would be reluctant to unless there was absolutely no alternative. I would never have known about AIH if it weren't for PBC so I focus on that.

Sorry to hear you had COVID, although I assume after vax and booster you weren't very sick, and also hope you don't have any long haul problems. I too have had Pfizer vax and two boosters, but still remain very cautious, mask up when indoors with others except my husband, and don't eat at indoor restaurants. Going to the theater this week for the first time since 3/20, but everyone will be masked. I'm a little uneasy about it, but hopefully it will be ok.

Let me know how it goes.

All the best

[Cat1966 in reply to Abstractionist]

I haven’t seen your reply, and sent few articles on Heptral. I am still awaiting for my ANA, but I am positive for AMA and AMSA.

With COVID I was relatively fine, just had a fever for a day, and felt weak for few days. Now I am mostly concerned for my liver, hopefully it was not that affected, but I guess I ll know more with the tests.

My husband and I wear masks indoors everywhere, most people don’t do anymore, as the mask rule is lifted, with few exceptions.

We went to the theatre for the first time about two months ago, and everyone was masked. I guess this will be in our lives for sometime.

Enjoy your time outing.

I will let you know on my appointment.

All the best.