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stage 2 Primary Billiary cirrhosis

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Posted 2/4/2010 12:42 AM (GMT 0)

Hi all..

A newbie here.

Funny thing really... I have never done drugs, never been a drinker I think I had a glass of red wine about 4 years ago and before that I can't remember. I was just diagnosed with stage 2 Primary Billiary cirrhosis, go figure! It does not run in my family and I test negative for any Hep. They said "Strongly positive AMA" AST and ALT levels high they also say "Advanced fibrosis" and "low iron saturation". Just really learning about this and I thought what better place to be then with folks that have what I have. Another funny thing is about 15 years ago I was denied life insurance after a blood test, after grinding them down they finally told me they can't insure people with Hepatitis C. So I went to the doctor and got tested, NO Hep C but I had elevated liver levels. I blew it off and now 15 years later I guess I finally have to deal with it. From some of the things I read it looks like I have a long road to travel... confused

Marc

Posted 2/4/2010 4:38 AM (GMT 0)

Hi, Marco, and welcome to the forum.  I'm really sorry for your diagnosis of PBC.  The cause is unknown, but it is thought to be an autoimmune disease and frequently other autoimmune diseases (such as rheumatoid arthritis) are found in patients with PBC.  PBC cannot be cured, but it can be treated.  In Dr. Melissa Palmer's Guide to Hepatitis & Liver Disease, she states the 3 standard drugs used to treat PBC are methotrexate, cochicine, and ursodeoxycholic acid.  

We do have several people here with PBC.  I know they can give you more info and support.  Also, stay in close touch with your doctor and keep a positive attitude.

Hugs,

Connie

Posted 2/4/2010 5:31 AM (GMT 0)
Hi Connie.
I have to tell ya I never even gave the liver a second thought. The only thing I knew about liver was that nasty smell that use to fill the house when my Mom was cooking it. I'm finding ton's of info on it and my doctor has given me ursodeoxycholic or Ursodiol I think it's the same stuff. I figure if it took me 15 years to get to stage 2 I should be just fine for another 15, I hope.
Posted 2/4/2010 9:09 PM (GMT 0)

Marco, once a person starts to have symptoms from liver disease, it can often go downhill really fast.  So don't become complacent and think that you will have 15 more years to progress.  Unfortunately, this may not be the case.  Take your medications, eat properly and get enough rest.  In other words, take very good care of yourself.

Hugs,

Connie

Posted 2/4/2010 10:16 PM (GMT 0)

Marco D,

You are correct, it is a long road as it is a chronic condition but don't let the negativity get to you.  Positive thoughts really do go a long way when dealign with lifelong conditions.  There was nothing you could have done differently.  You had mentioned not having done drugs or drinking heavily.  PBC has nothing to do with that.  I have AIH (autoimmune hepatitis).  Same thing, who knows what caused it.  Different things could be a trigger but hard to pinpoint one cause.  Patients usually have a predisposition where autoimmune diseases are concerned.  I have 2 sisters with MS.  I, too, am on Urso but to treat a side effect of my immunosuppressant.  Generally, Urso is a PBC drug.  It's a bile acid to keep the bile thin so it doesn't back up and cause more cirrhosis.

Connie is right, don't think that since it only really came to light now that you have all the time in the world to take action.  Be good to your body, eat right, exercise and take your meds.  See your doc and get your labs done when you are supposed to.  Find out about the alcohol thing.  If your doc says none, then none it is!  There is a lot of info in Melissa Palmer's book and check out The American Liver Foundation website.

Let us know how you are and welcome to our little liver-related family!

Posted 2/4/2010 10:21 PM (GMT 0)
Marco, I can confirm what Connie just told you. I had Hep C for 38 years before diagnosis. No big deal, I felt fine. A few years later I had a cerebral hemorrhage and my liver became cirrhotic almost overnight. Five years went by, some problems, though they certainly weren't insurmountable. Last spring, I began to experience fluid in my belly and legs. The belly wasn't much, until it became infected, then they had to try and drain it off. No luck, so I was hospitalized for 5 days and treated with diuretics and iv antibiotics. If you take a look at my recent post to Bostonmike, you can read what happened next. I went a long time, almost 45 years and then I had a transplant. I thought that it would never happen, until the day it did. If you can find a way to avoid getting to that point, ie. taking very good care of yourself and getting the best medical care, do so. Be well. **David**
Posted 2/5/2010 12:31 AM (GMT 0)
Hi David, Hi Dany.

Well.. I got a bone density test yesterday as well as giving them more of my blood. They say I have to get blood tests every 3 months. I eat good most of the time but now the Doc says I have to cut back on the beef, he says I need to watch my protein intake. One funny thing about all this is he said to watch my chest, for some reason I guess ManBoobs are something that could happen. I'm a 170lbs 5' 10" so if I were to start growing boobs you would defiantly notice it. I mean don't get me wrong... I love boobs!! But I prefer them on women, not me. Maybe I should get some info bra sizing.. :)
Posted 2/5/2010 1:16 AM (GMT 0)

The "man boobs" thing is gynecomastia.  It is caused by a hormonal imbalance and is something that can happen with liver disease.

You are better off eliminating beef from your diet.  This is the most difficult protein for your liver to break down.  In a diseased liver, it really has to work overtime to break it down.  Try turkey burgers, chicken breast (no skin), seafood, pork tenderloin, beans. low-fat cheese.  You can do a search online for recipes.

It's a lifestyle change, but your liver will thank you for it.

Hugs,

Connie

Posted 2/5/2010 1:26 AM (GMT 0)
Hi Connie..
I love Turkey! and chicken as well as pork. Eliminating beef should not be a problem for me but..... The Manboob thing might, I mean how many women out there dig a guy with possibly bigger boobs than them?
Marc
Posted 2/5/2010 4:03 PM (GMT 0)
Hi Marco,
I had "manboobs" before receiving a transplant. My PCP told me it could happen, when he prescribed spironalactone (sp). I've been told that actigall may also do the same. I'm sure there are other drugs that precipitate it. Being "stacked" when you're a guy isn't fun. I didn't take my shirt off, even on the beach. I'm thin, so it looked weird. Six months post op and they're gone. Phew! **David**
Posted 2/5/2010 4:17 PM (GMT 0)
Hi David..
Holy smokes!! So what am I lookin at, a D cup? I mean were they really that noticeable? I'm only asking because ever since I heard this I'm constantly looking at my chest and wondering how long before I have bigger boobs than Pamela Anderson.
Thanks..
Marc
Posted 2/5/2010 4:21 PM (GMT 0)
Also..
Anybody here ever get a skin infection?? I have this nasty infection under my arm it's like a total bummer, right in the arm pit. The Doc said it could be staph infection. Are we folks with PBC more susceptible this? I'm on antibiotics and it seams to be getting smaller.
Posted 5/23/2011 12:42 PM (GMT 0)
Hi Marco,

How are you? Hope you're feeling well. I just read your thread for the first time, and was interested in your story. I am a 43 yr old female, relatively healthy, except that recently I had itchy palms and my doctor being a paranoid one, ran so many tests for lupus, addison's disease, etc...And one test for antibodies came back positive which is AMA. My liver enzymes are all ok, so she didn't get alarmed but will repeat the test in 3 months. I read so much about PBC and the correlation between the AMA and PBC and I think I have an early stage of the disease. How did your doc diagnose you? Any liver biopsies? How are your liver enzymes now that you're on Ursodiol? How do you feel in general?

This forum is great. There are genuinely caring people in here, which helped me through  a lot during my mom's liver illness last year. Hope you're doing well Marc, and looking forward to hear from you.

Best regards...

Liverette

Posted 5/23/2011 12:50 PM (GMT 0)
Marco... My Mike would kill me for telling you this but yes he had Man Boobs... quite a nice set... probably about a B cup though sorry no D's... once during confusion which comes with ESLD.... he paraded around in my large ole lady white undies and bra... he was a sight to behold.... you have lots of fun to come... hopefully later than sooner... and maybe youll stalll it... but doing all the right things will help... glad u found us... Sandia
Posted 5/23/2011 3:25 PM (GMT 0)
I just recently tried to cut my meds in half because of the same exact reason. I Take 200 mg.'s of Spironolactone. Figured if I only had to take a 100 mg.'s the ManBoobs would lessen. When I awake in the morning sitting on the edge of the bed, I can feel them and when my girl hangs on me while I am on the computer. I tell her do not touch my BooBs their really sensitive. Crazy subject. I can see if I was 245 pounds and had a little boob action going on, but I am usually 185-190,and 6 feet tall, now. I am really self-concsious about taking my shirt off on the beach or anywhere. Even coming out of the shower in front of my girlfriend thatI have been living with for 9 years. I love the ocean but being on diuretics may not be a good idea to spend the day there. Maybe an hour or 2,tops.BostonMike. Having ManBooBs really STINKS!
Posted 5/24/2011 12:45 AM (GMT 0)

Guys, did you notice that his last post was in 2010?

Hugs,

Connie

Posted 5/24/2011 2:49 AM (GMT 0)
Yeah, but we're guys and that's all we think about.
Posted 5/24/2011 2:59 AM (GMT 0)
          turn
Posted 5/24/2011 2:50 PM (GMT 0)
scool I was feeling pretty cool until Connie... pointed out... what none of us numsculls figured out.............lol tongue
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