Recent PBC Diagnosis - Male

[windfire777]

Hi All! Recently diagnosed and from my research of PBC, I am apparently the rarest of the rare- a male diagnosed with PBC and AMA-negative. I am headed to Mayo in a couple of weeks for a second opinion. Was diagnosed based on biopsy (very mild scarring) and high Alkaline Phosphatase. I have no symptoms and was started on Ursodial (no complications in the first three months). Guess we shall see what Mayo has to say. The PBC Foundation has a lot of great information!

[Ktltel]

Well, Welcome!

Join the PBC foundation above if you haven't already. Lots of great people on this site, some other males too, so you're not alone.

Sorry you have to be here in the first place. Hope your appointment at Mayo Clinic goes smoothly. Let us know how things go.

Great you've started on Ursodiol. First line of defense! PBC is a slow progressing autoimmune disease and with Ursodiol it's even s l o w e r.👍

Again welcome Windfire777.

Stella

DX PBC 10/16

DX RA 4/17

DX DeQuervains tendinitis 7/17

[windfire777 in reply to Ktltel]

Thanks! Yup, I already joined the PBC foundation. Only being 34 and having something that is pretty rare came as a shock to me. But at least from the first review of everything, they have ruled out PSC, which is more prevalent in males, but is less manageable. So I guess that is good news. 🤞 that Mayo goes well. Thanks again!

[EileenUSA]

Glad you found us here. ( well sorry for needing to) Catching it early is a good thing and there is a lot of research going on that you could benefit from in future years. Hope your Mayo visit gives you answers and direction.

[gwillistexas]

Best of luck to you.

[Sachin1234]

I’m a male diagnosed 3 years ago Man!urso is working fine with me since I started tho I’m having other side problems from pbc like reactive hypoglycemia, hypothyroid and sjogerns like that..all the best and let’s hear what mayo says! 👍🏼

[windfire777 in reply to Sachin1234]

I’m interested to hear if they find any other autoimmune issues. I don’t have any of the typical symptoms of PBC or other autoimmunes that are commonly found with PBC, like sjogerns. But my sister was actually recently diagnosed with sjogerns and AIH. I just got my blood results after 3 months on urso. Not sure what to expect in the way of decreased ALP after only 3 months. Hopefully the docs will have good news. Thanks for reaching out!

[Sachin1234 in reply to windfire777]

Pbc is more concern than any others..

mine alp drop after one months.. that is a good sign ?

[Sachin1234]

I was diagnosed at 37 but my symptom started around 32 or 33 and dr rule out lactose intolerance!

Where do you live ? I live in Frankfort Kentucky!

[windfire777 in reply to Sachin1234]

Elevated ALP is my only symptom, but they apparently confirmed PBC with biopsy. Getting a second opinion because there were conflicting initial thoughts on what it was. I live near Philadelphia.

[Sachin1234 in reply to windfire777]

I had abnormal liver panel and ama..

when they did biopsy my liver was fine.they thought I had aih frist and my gi wanted to put me in steroid since I didn’t have inflammation so he wanted to 2nd opinion and sent my biopsy to Boston hospital and also consulted liver specialist in uni of Louisville who is my primary dr right now and they conclude I have pbc😔.. any way so far so good

[4pjx__]

Damn! Too bad you didn't win a lottery jackpot instead! My hepatlolagist said the Urso should slow or stop the progression of this disease. I like the "stop" word myself and there is no doubt that there are some people that have had their PBC stopped. Most people, I think, see a slowing down. Mine has slowed as far as I know. My lft's have stablized. I have been on Urso 5 months now. One of my doctors said if she had to pick a liver disease, PBC is the one she would pick. In most cases it can be managed. There are several gentlemen on this site and I bet they'll be happy to have someone new to share their issues with. Stay positive, you can get better.

Pam

[PCBnPBC]

Hi, its a shock right?

I was disgnosed only 2 years before my tx. it all came on very fast, but obviously had been suffering for 20 years.....(the family joke about me sun tan was it turns out jaundice!) all thwe symptoms cane crashing in during the last 24 months.....now 3 years post tx, and douing really well. had I realised PBC earlier, with Urso I might have avoided the TX. so in a way good that you know, but in every other way bad luck! need to keep spirits up, that is key, welcome to the community, there is a great source of help and support here, slowly we all start to get a better understanding of this rare autoimmune issue, ask all the questions, someone here will have some answers! most people die with PBC not because of it is something to remember!

keep smiling and taking the urso.