Men

[spoul]

Just interested. I know only 15-20% of men are sufferers and I've noticed of the handful of men I've met they have all had transplants.

Tends the suggest that mens prognosis is slightly different to us women!

[Hidden]

Hiya spoul, I do know of a male on this site who hasn't had a transplant and he has PBC as does his brother. He might respond, up to him to comment if he reads your posting.

As for this I'm not sure myself. Does it somehow work then that it could be like this for males and the other way round if females have PSC then?

If there is something in your post then does that somehow suggest then that PBC is somehow hormone related? There was a mention on here recently of a man thinking his wife's PBC was down to becoming pregnant but I actually doubt that as that would point to PBC being an all-female thing but hormones, could be different as both sexes can have some male/female hormones.

[spoul in reply to Hidden]

Hi peridot,

Think I mentioned to you before that I was a midwife and there is a condition called obstetric cholestasis which affects the liver with resulting itching.....lfts usually return to normal after pregnancy. I do wonder whether these woman are predisposed to liver disease in later life.....but I don't know! I have a friend who suffered with the condition in her 3 pregnancies so I will observe her very closely!

[Hidden in reply to spoul]

Yes I have heard of obstetric cholestasis and know of women who have had it but I still don't think it has anything to do with PBC. Hopefully one day we find out. I know I was fine throughout my pregnancies, sailed through with no problems at all.

[spoul in reply to Hidden]

I'm sure it's something that research will prove or disprove. Obstetric cholestasis is a relatively new thing that's picked up during pregnancy but like most things it's always been there.

Pbc and ob cholestasis are both cholestatic liver diseases.

[Brummi]

Hi spoul, When I first found out that I PBC I was told that it was mainly ladies that suffer this. When I got home out come my birth certificate just to check my orientation. Joking apart the consultant said they do not know what

causes it and why males got it was an even bigger mystery. I had been ill for years but typical male pride mixed with a bit of ignorance I got it very severe. Things are getting better now as I have had a transplant, would it not be nice. if we could all say I'm cured.

[spoul in reply to Brummi]

Haha that made me laugh brummi! Glad your keeping well with your new liver.

[Brummi in reply to spoul]

All the way through my illness I never. Lost my sense of humour. Even when I wheeled into theater. It makes life less stressful which in turn helped the PBC..

[ranrace]

"Recent studies have shown that it may affect up to 1 in 3–4,000 people; the sex ratio is at least 9:1 (female to male)"

en.wikipedia.org/wiki/Prima...

So does that make a male a 1 and 27,000-36,000 chance?

Anyways, male here with the PBC for sure now (long story). I hope the prognosis is good, but they don't really say much about all that. Other then see you a month aka drawing more blood.

[Hidden in reply to ranrace]

Out of interest this week on our national news wikipaedia has been under fire in the area of science and it was stating that certain facts that are on the site are wrong. I don't go in for the statistics as I find working out averages a bit of an oddity myself, always have. Always laugh at the 1990s phrase (or was it 1980s?) of the '2.1 children' scenario.

[SC49]

I've wondered about this. Given the experience that people have getting a diagnosis, I wondered if maybe men don't get diagnosed at all, especially if there's unusual features to their illness. For example, if the LFTs are not raised, maybe they'd not investigate PBC further or if there's no AMA test.

I wonder the same about other countries - if there's a low incidence of PBC, is that because people don't get tested / diagnosed or if there's a genuine lower incidence

[PCBnPBC]

I understand (and my personal experience backs this up) that there is a TENDENCY for males to have PBC for years and years without being aware, sure we tend not to go to see Drs. (if you can generalise) but IF we were itching and fatigued I am sure many would be diagnosed earlier ! So us Males have less to report UNTIL the liver becomes cirrhosed, PBC tends to be very aggressive in males towards the end, so between being diagnosed and getting a transplant (for males) tends to be a much shorter time frame. I await transplant, and I am very ill, I was diagnosed Feb 2013 with PBC

[spoul in reply to PCBnPBC]

Sorry to hear your not well and hope you don't have to wait too long for a new liver. I think your probably right in saying that generally men are not good at attending doctors and this could therefore postpone diagnosis

[Hidden in reply to PCBnPBC]

That is how I took myself off the the GP. Itching. I wasn't concerned about being fatigued as my life had been full of trauma, stress and hard work over the years I just took that as normal at the time. I had not seen a GP with any health complaint since 1999 and it was 2010 I started itching.

[sistergoldenhair in reply to PCBnPBC]

you are in my prayers, cyndy

[sistergoldenhair]

To me the bottom line is not why me, how, when, what could be different............it is something that is there. You can only take one day at a time, we do not know about tomorrow. I am in stage 4, was diagnosed almost 20 years ago at 37. For whatever reason this is part of God's plan for me, I don't dwell or sit and mope(not saying anyone else does), I thank God for each day and try to get the most out of it, if I push myself to much, so be it...........then I take a down day or two. I just know I am blessed, there are many people not only w/PBC but other afflictions way worse than me. My thoughts and prayers are with all of them and all of you, cyndy

[spoul]

Thanks sistergoldenhair...... Kind and true words x

[jmhaskins]

I have PBC as far as I know. I was diagnosed middle of last year though I'm going through a second opinion with the Mayo Clinic right now. Very early stage. I was diagnosed because I was applying for life insurance and the blood test said my enzyme levels were elevated. I have no symptoms except since the biopsy I can now sometimes feel a small amount of pain (sometimes more pain) in the general area of my liver. Urso seems to be lowering my enzyme levels though. I exercise regularly and try to eat right. we'll see what happens.

[littlemo]

Thats a good point re men and other countries ie. if PBC is not common then people presenting with the symptoms are probably being tested for other diseases other than PBC. I personally feel having lived with this now for 13 yrs (diagnosed 12yrs) that the more research done into this disease the more likely it will be that a cause and a cure will be found. That is why sites like this are so valuable also, as we can all share our experiences of living with PBC and can state how it affects us personally and give tips or advice from our own personal experiences as to how to deal with symptoms or even just what questions we should ask our hepatologists drs etc. So as a famous ad once stated Its Good To TALK. x

[Karaliz in reply to littlemo]

Beautiful picture littlemo! Congratulations ! Karaliz.