Help My mom was diagnosed with PBC and we need answers if anyone can help.

[andrea042473]

Hi everyone my mom is 72 years old and was diagnosed with PBC in January of 2013. She has little to no systems at this time. However last month according to her ultrasound it read the liver showed mild cirrhosis. Can anyone tell us once the cirrhosis shows in the liver does it progress fast or is it still a slow disease. My mom is on Urso and has been for over a year. i read so much about this being a slow progressing disease is that still the case once you get the cirrhosis. She is due to have a ct scan in August. The ultrasound she had in February 2013 showed her liver looked unremarkable and now last month the ultrasound says mild cirrhosis. This disease is so hard to understand. Alcohol has never touched my mothers lips. I need my mom for many more years. Please if you can help us understand the stages of this disease I would greatly appreciate it. I understand your reply is based off of your own personal experience.

[valco]

Everyone is unique, but it seems that your mother's symptoms are much like my own and I am almost 72. I have had PBC now for 11 years but still live a normal, healthy life. My liver shows mild cirrhosis and I am aware that with some people the disease accelerates faster than with others but look on the bright side, if she is symptom free it is most likely to be still in the early stages. The physicians will keep an eye on her.

[Hidden]

Hello andrea042473.

I was recently 50 and was diagnosed with PBC in late 2010 when I was 46. It took 9mths from going to see the GP to get diangosis of PBC. I had an ultrasound scan 4 months prior to diagnose and it showed my liver and surrounding organs to be in pretty good shape.

Now with PBC it appears that everyone is different as valco has stated but with urso it seems to halt PBC somewhat with majority of us.

Your mum might never progress further plus we can all expect a bit of deterioration with our organs as we get progressively older naturally. Doesn't mean to say that it will ever be a problem. Even if one is said to be in a mild state of cirrhosis it can be a case that that stage can go on for years. Your mom sounds in pretty good shape if she isn't experiencing much in the way of symptons of PBC (I just have the night time itch).

One of the best ways as a guide to how one is doing with PBC is to have a look at the LIver Function Test (LFTs) blood results. That can spur people on seeing them come down or remain stable whilst taking urso.

I personally do not go in for these so-called stages of PBC. I have not had a liver biopsy and doubt I'd uptake one if offered now. I was diagnosed with fatigue and itching, abnormal LFTs and also postive AMAs back in 2010. MY hospital doctor at the time reckoned early stage and he said I'd probably started with a few years prior.

My motto now I have PBC is to live my life, enjoy it as best as I can. I never took life for granted being a young widowed mother and I had to accept that just as my children had grown-up and I had got my life back together on remarriage, I started itching and this led to PBC. Enjoy your mom and continue to make those good memories together as how you think at present might never happen and I do not live on what if's. Easier to deal with anything that comes along, less stressful. Best Wishes to you both.

[Calogia]

Andrea - I am 56 yrs. old and have Stage 4 PBC. I have mild cirrhosis and it has not changed in 5 years. Have your Mom stay on the URSO and if she is not having any other symptoms that is a great sign! Alcohol does not have anything to do with the causes of this disease however, once diagnosed you should refrain from any alcohol intake. Especially if you have cirrhosis. You sound like you are staying on top of things. Your mother is lucky to have a daughter like you!

[crundalite]

Hello Andrea

I am 68 years old and was diagnosed 20 years ago. I have few symptoms apart from tiredness and some lethargy. I have reached the stage where cirrhosis is present and also oesophageal varices which will probably be banded before too long. No-one can forecast how long we will live no matter what is wrong with us-so enjoy what you have. I hope it is reassuring for you to know that there are quite a few of us 'silver tops' (as my daughter calls us) out there.

[andrea042473]

Thank you so much everyone for taking the time to share your own personal experience with this disease. I have shared all of your stories with my mom and she is blessed and is so happy to hear that you can live many years with PBC. I wish each and every one of you many more years of happiness and god bless all of you.

[Axl888]

Andrea PBC is not a death sentence. Contact the PBC Foundation in Edinburgh and you will get lots of information that is factual and therefore reassuring. Go with your mom to next appointment armed with a list of questions to ask the consultant. They know you mom on an individual basis and will be able to give you more information based on your moms results. Don't worry ... ps also the symptons people have are no indication of how far on the disease has progressed. We are present differently with symptons but they are no indication of how scarred the liver is. Take care

[Brummi]

Hello, I was diagnoised with PBC. Nobody actually knows why it happens. However two and a half years after being told I have it I had a liver transplant. Having been through it I am happy to talk about it. So please ask I will try to answer anything you ask. Regards to you both

[andrea042473]

I do have a couple more questions my mom wanted me to ask . Has anyone ever experienced chest discomfort more between breast bone area. She has described it more as discomfort than pain. Also some bloating in the upper abdomen and gas. (This might be from ursol) Lastly does anyone follow a special diet and or take special vitamins? Thank you very much .

[Brummi]

Hi , I will try to answer what I can, PBC is a slow disease, mine may have been in my body for about 20 years. I have had more then one scan in fact several ultrasound, CT and MRI. I went to the liver clinic once a month and had bloods taken and depending on the readings the next course of action was then planned. The trouble is not much is actually known about the course, I got tired easily, I was quick tempered. Certain foods I have to avoid mainly foods that contain potassium ( bananas, mushrooms and ect) . Potassium is the enemy of the liver, but your body needs it . Now the so called healthy foods grapefruit,citrus,also Green tea and Earl Gray are forbbiden as they react against my anti rejection tablets. There a web site that will help you , my advice is stick to UK sites as the american ones may differ slightly. If you are not sure about anything please ask if I don't know I will find out for you.

[andrea042473]

Thanks Brummi I will definetly share your inoformation with my mother and I really do appreciate you taking the time to answer back. Its great to have people to turn to for answers.