More like PBC

Thanks again for the add. We are still sorting out with testing..what my 20 year old son may have and I dont see any other young men who have PBC here, although in sorting through his tests, it appears more like this could be his diagnosis. Di yoy kniw of any younger males who hace this, and what their outlooks, medications and risks are? Thank you..worried Mom

20 Replies

  • Me again I know I'm getting a little ahead of myself but I can't help but take these numbers go online and try to research and put them all together. The most positive thing I've seen with regards to medications is Van. If my son turns out to have a crossover with autoimmune hepatitis would Vany still be a suitable drug for him?

  • I have pbc with aih cross over.

    Why do you believe he has this

    What's his enzymes,

    Was he AMA or AMA M2 and smooth muscle tested. Also Ana

    This is blood work

  • Non AMA .positive ANA. Alk P 398. AST 74 . ALT 156 non IgG or IgM. Non ANCA

  • And no smooth muscle either

  • When you say no smooth muscle, are you saying that his smooth muscle is negative or they did not do the blood work for smooth muscle?

    Did he have a liver biopsy

    Or other scans? There is also a disease called non alcholic fatty liver?

    Does your son drink alcohol

  • Hi Nwad

    I really think you'd be better waiting to see what your son is diagnosed with. I know you're worried but you're just going to stress yourself out googling.when will he see someone regarding his results?

    Only about 10% of people with pbc are male and I think 20 would be very young to have this.

  • Not only does google stress us out. Most of the information is incorrect

  • Negative smooth muscle.. had MRCP scan..negatuve. ultrasound next week. Non drinker.

  • Hi again , I think you just need to be patient and wait until all the results are in and your son's specialist can discuss it all with him and decide on the way forward. I know it's hard to wait but there's not really much you can do at the minute. Have you told your son what you are thinking? How is he feeling about it all?

  • Parts he may have a liver disease that may progress to transolant eventually. He is pretty much in denisl at this point. No symptoms but some intermittent itching.

  • It's good he's not too concerned for now. It could turn out to be nothing serious hopefully. Also stress doesn't help. I think it would be better to try not to keep discussing it for now until you know more from his results, but that's only my thoughts. Good luck and let us know how he gets on.x

  • My brother had PSC which is a similar autoimmune condition affecting the bile ducts. My consultant described PBC as the affecting the twigs whilst PSC affects the branches - symptoms are very similar but it is much much more common in younger men. We think my brother probably had it in his early 20s but wasn't diagnosed until his 30s.

    My brother had a transplant about 8 years ago. His new liver is working fine but he a few other health issues.

    Which hospital is he being treated by?


  • Duluth Minn. St Lukes. Considering the 4 hr drive to Mayo Rochester

  • He is also looking at small duct PSC

  • To me - and I'm no doctor..... but over 20 years experience with brother - the PSC sounds more likely and small duct sounds better.... If I were you and it was my boy (mine is 17 years old so not far behind...) I would go to Mayo if that is where the experts are! We are in the UK (London) and my brother goes to Kings College, it can take hours to get there and back depending on traffic.

    Keep positive, early diagnosis is going to help your lovely son live a long and happy healthy life


  • Thank you

  • Talk to the trained advisors at the 'PBC Foundation' - they host this site - there is a link at top of the page to their website, where you will find email and phone contacts. However, I would suggest that your son needs to see a specialist Liver consultant/hepatologist, not just a general gastro: and preferably a hepatologist with a speciality in PBC.

    For a formal/official PBC diagnosis, 2 out of 3 diagnostic criteria need to be present :

    1 - raised/abnormal liver function tests (lfts) typical of PBC eg: ALP and GGT are what my consultant sets greatest store by. and/ or:

    2 - the presence of AMAs (anti-mitochondrial antibodies). and/or:

    3 - a liver biopsy that shows liver damage typical of PBC.

    Your son cannot be diagnosed by symptoms alone, but for PBC these are usually: fatigue, itching, muscle and joint pain, and possibly some signs of jaundice.

    If 1 and 2 above, are positive - especially with symptoms - that is enough for a diagnosis of PBC, but don't worry, the drug Urso has made makes things so much better for most PBC people, and now there are two new drugs (with more in the pipeline!!) that can be used with Urso if that's not enough - and recent results suggest that they work even better if used with Urso.

    If AMAs alone are present, that is not enough for a diagnosis [I've had AMAs since 1992 - maybe even all my life - but have no signs or symptoms of PBC, and just have to have lft -tests every year, with occasional examinations, ultrasounds etc].

    If the lfts are abnormal and typical of PBC, but no AMAs are present, then a liver biopsy is needed. An ultrasound can rule out lots of other issues and conditions, but is not enough to diagnose PBC. But, if an ultrasound shows some scarring of the liver, then that should prompt a biopsy, which is the best test for PBC.

    Obviously I hope it is not PBC, and that you get some answers soon. But try to not worry, as the outlook for PBc has improved remarkably. Also, try to help you son not to worry and stress, as these are the worst things for any autoimmune condition. Easier said than done, I know, but encourage him to do the things he loves and that make him relaxed and happy - just maybe not including alcohol!! Good diet, exercise that he enjoys and lots of fun and spoiling are always the best.

    Hope this helps, Take care,


  • Hi GrittyReads,

    I remember you mentioned in some other post also about the 2 new drugs for PBC.

    I now there are many in pipeline. But one of the 2 drugs I know is the Ocaliva. What is the other one?

    I thought for PBC there are currently only 2 drugs officially Urso and Oca.

    Do you mean Fibrates?


  • Hi worried mom, my son is 17, and has just been diagnosed with PSC, not sure if he has AIH as well. We are waiting to see the GI Dr at Phoenix Children's hospital. My son has had strange skin reaction with burning,itching,triggered when going outside,emotions, and exercise for 3 years, and just recently this diagnosis. I have no idea what to expect either.

  • Just to fill you in he has transient elevation in SM/antibody, ANA negative P-ANCA was1:640, He has a normal MRI in november, but the liver biopsy in March showed typical PSC, changes in tissue were classic PSC, still healthy tissue seen. We are going to Phoenix Childrens hospital when referral is approved,hurry up and wait. This is very hard on my son and we are unsure of what to do..I am modifying his diet, and suggestions?

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