I suspect I have a pbc. Where to begin? Indy.

[JCIndy]

Not Diagnosed. Just googling and it really seems this is what I must have. I had esophagus cancer 13 years ago. And I feel this has stressed my liver. Never had a drop of alcohol? Thank goodness.

[Ktltel]

Hi ya,

Lots of questions here:

Sorry your having these problems. Did they get the cancer under control for you? Do you have an elavated Alkaline Phosphatase and a positive AMA-M2 test? What makes you think it could be PBC? Are you seeing a Liver specialist?

Stella

PBC/5yrs

probably longer.

[JCIndy in reply to Ktltel]

I was looking at symptoms. My doctor hasn’t been any help recently. I have a Gastro doc and have seen Gastro docs at Mayo. My latest alkaline phosphate was 66 in July and February. But I got pancreatitis. And this past week my biliary area feels knotted. And I am itchy all of a sudden. Among other things. Having had gallstones and it removed I am aware of the general biliary duct area. And it just feels like nothing is flowing. My throat was sore yesterday and had pharyngitis too. I have had throat ulcers for three years and this pain was all along the throat/stomach. My stomach is pulled up to my throat. I’m being treated with my now fourth antibiotic for a lung infection as well. Recurring due to my bronchiectasis. I kinda of feel like the antibiotics might have not helped my liver and biliary functions. So just looking at symptoms for my doctors to consider. This one seems to check a lot of boxes and my gut feeling too.

[Ktltel in reply to JCIndy]

Sorry to hear what your going through. There are 2 criteria for diagnosing PBC. (1) is an Elavated Alkaline Phosphatase (Alk-phos) and (2) is a positive AMA-M2 blood test. Some doctors do Liver biopsies as well but some PBC long-timers disagree with that procedure for a definitive diagnosis.

I had an an elavated Alk-phos and a positive AMA-M2, "PLUS" my Liver specialist had me have a Liver biopsy as well. My liver biopsy only showed mild fatty liver. Zero PBC. But, I did infact have it. Like I mentioned, those 2 criteria (elavated Alk-phos/positive AMA-M2), according to my hepatologist, means one has PBC. Your Alk-phos is normal. That's a good thing👍🏻. Probably a good idea to have more tests done and get to the bottom of what's going on. That way Doctor Google doesn't scare you to death. I see Doctor Google too. He gets it wrong a lot. 😉

Keep us posted.

Stella

[JCIndy in reply to Ktltel]

Not sure if I should put this here in a reply that might not get seen. But wondering which hospitals telehealth/video visits are recommended for liver specialists? Again I’ve been to Mayo, and Cleveland Clinic, so I already have establish care at those places. But I’ve not done virtual visits with anyone. I am open to traveling, but if I could hook up with care providers long distance like this, and they could order labs for me locally, that might be faster way of getting better treatment.

[JBH2000 in reply to JCIndy]

Hi JCIndy- PBC has nothing to do with alcohol. Your GI Dr should check your liver enzymes- that’s how they determine if you have PBC. I went about 9 years with enzymes going up and down- then stayed up. To confirm, I had a liver biopsy.I get bloodwork every 3 months. I have joint aches, and the medication is strong, so it’s not great for my GI system. Bottom line, you’ll live a full life on meds with PBC. I eat better, and walk 5 c a week. I’m a couch potato- but PBC got me motivated to take better care of myself! Good luck! You are not alone - reach out anytime.

[cazer in reply to JCIndy]

I have pbc and have had pancreatus.. And have a damaged pancreas from that..I would say in my experience that the pancreatitus can have lots of symptoms which are similar to the pbc symptoms...

Also the bld tests are likely to be off for both conditions.. For similar bloods.. e. g alp etc..

I think you probably need specific antibody tests for pbc, but you may need the pancreatitus to improve before they can work out if you have pbc...

If you want more details on crossover symptoms I had /have please message me, or if there's anything else you want to know about my experience..

Best wishes carole.

[JCIndy in reply to cazer]

Thank you for your informative reply and offer. I’m getting ultrasound today for this general area

[Lauralee851]

Hi JCIndy ,

I went on a couple of lots of strong antibiotics before Christmas and they affected my ALP or ALT, my liver was aching as well but once I stopped the antibiotic I got retested in two weeks and my level had returned to normal.

PBC is one of those things that you just don’t know until you’ve had the tests done as there are other possibilities. I have positive AMA but my liver is still normal 8 years later so I see my specialist and get tested regularly but still not diagnosed with PBC (which I’m glad about).

Take care x

[Heaslea in reply to Lauralee851]

Lauralee851 - do you take Orso? Or did your liver stay normal on its own? Hope it's OK to ask. I have positive ama etc but haven't started Orso yet - I will see specialist soon and guessing he will want me on it.

[JCIndy in reply to Lauralee851]

Yes, I have a lung infection and am on my fourth antibiotic. The first one Levaquin almost felt like I was gonna die from it. One dose. They then put me on doxycycline, azithromycin, and a new one now called sophamemyst. Because I keep getting really bad nausea from all of them. I’ve never had nausea from antibiotics I could always take them like candy. Maybe this is what affecting me too. You don’t know how thankful I am that you saw this and replied to it. I really feel deep down at this is what’s happening to me. Again I am so far not a normal person when digestion is concerned. Since my stomach no longer works, I don’t produce stomach acids, bile is the only digestive enzyme that I have except for the little bit that comes from the pancreas. And I had pancreatitis a couple of months ago. Also had a colleague get the same cancer I did go to the same doctor and have his esophagus removed, and the thing that eventually killed him after only 18 months was his liver stopped working. That’s my biggest fear. And I’ve had two bouts of hepatitis too. I just keep trying to fight and solve all the problems that come my way. Again thank you very much.

[Lauralee851]

I have only ever been put on urso when I was pregnant and my bile acids went back to normal after that. I’ve just been lucky so far, it’s nothing I’m doing ‘right’ my dr describes me as having ‘mild chronic autoimmune liver condition’ in my notes or something like that and I’m generally very well which I’m grateful for!

[Lauralee851]

Really sorry to hear about your troubles, it sounds like you’ve had a lot to deal with. I also had awful gastric problems with the antibiotics and felt much better once I stopped them, I hope you feel better soon too. Recently I read on here about a couple of alternative things to take for liver and I think I might read it in to those things such as TUDCA and see if they could help to keep my liver as healthy as possible. All the best and take care!

[Stub007]

I would start with my primary care doctor: Telk her/him. your suspicion and ask for the appropriate bloodwork. If two or more items turn out to be high, the doc will refer you to a specialist who will confirm whether or not you have PBC.Best,

Don

[JCIndy]

I also started getting very bad itching, prickly feeling Saturday night.

[JCIndy]

Visited pcp. He did not think I have pbc. Lab came back but only had the alkaline phosphate and it was normal. I’m assuming this eliminates pbc. He thought I might have a liver stone as I have no gallbladder. Ultrasound to follow.

Thank you to everyone that cared for your insightful discussion.