Pbc

[janine541]

Hi everyone

Has anyone on hree had pbc for a long tjme without a transplant.

I read that without symtoms it can be years. With symtoms less brford you nèed a transplant

[mrart]

8 years so far and no symptoms and no longer any cirrhosis of the liver.

[janine541 in reply to mrart]

Have you ever had any symtoms and how have you repaired the cirrosis

[Arlie in reply to janine541]

Janine , I’ve had pbc over 30 yrs , i’m now 71 , i’m on urso since day one , as of the last 6 mo It went to 900 mg daily , been having ammonia levels fluctuate so I’m taking lactulose, I’m ok ups and downs here and there , I’m going to NY City to Presby Hosp liver group and see what’s going on with my liver now , I never drank and avoid drug med , i’ll Let everyone know , think positive and , don’t drink, try avoiding pain med , and take your urso 😊

[janine541 in reply to Arlie]

Thankyou

[Sun65 in reply to Arlie]

Thank you

[mrart in reply to janine541]

My symptoms were very mild. Some itchiness and cognitive/recall issues. As for the cirrhosis, the liver can heal itself and I think taking my Urso exactly every 12 hours keeps therapeutic levels of my meds consistent. In other words the meds work better. Too many people take their meds around sleeping and eating times which is very sporadic. Meds are meant to be taken ever 24, 12, 6, etc hours depending on your dosage. To get the most out of your meds take them like they do in the hospital, on time every day.

When dealing with a chronic condition you have control over 4 things that can have an impact on your health. They are: what you consume, how much exercise you get, what you think and if you socialize. I follow the FODMAP diet for IBS, I don't smoke, drink or do recreational drugs. I stay active walking and taking the stairs, Instead of worrying I think about how gratful I am every day, I meditate to clear my mind of worry and make a point of spending quality time with family and friends. Having PBC is no longer a death sentence if you have questions ask you doctor and figure out what works for you. If you spend your time worrying and asking google you'll be chronicly stressed which will only worsen your condition. If these 4 areas need to change Do Not try and do it all at once, you're guaranteed to fail. Pick one do it until it's a habit then move onto the next. Also have someone you have to answer to call you every day so you're accountable. Doing these 2 things will increase you chance for success.

You're not going to die from PBC anytime soon so enjoy your life now. I hope this helps.

[janine541 in reply to mrart]

Thankyou

[Sun65 in reply to mrart]

Thank you I now understand how to take the urso

[jane1964]

Hello I have had PBC for 15 years with symptoms from the start fatigue, aching and itching.I am fortunate that Urso works pretty well for me.I have progressed to cirrhosis in last 2 years but it's early cirrhosis and I hope to live many more years before I need to consider transplant if at all.I was 40 when this all started.I hope you do well too.

[janine541 in reply to jane1964]

Aww thankyou

[cazer in reply to janine541]

i have had a transplant but i believe in hindsight ive had it from my early 20s...

im now 55...and had txp at 53...so that's over 30 years..

unfortunately it is a myth that cirrhosis heals... inflammation can ho but full blown scarring is there for good... however you can manage very well with a partly scarred liver... and urso is thought to slow the progression of cirrhosis.

please try not to worry about what might not happen.. every person is different and some never get significant liver damage.

enjoy life in every way you can and take good care of yourself, very best wishes cazer x

[janine541 in reply to cazer]

Thankyou ... I try not to think about it and to be honest been ignorant at the fact of being over weight and un healthy.

I convinced myself that because i didnt drink or smoke i would be fat and happy.

I have recently started slimmingcworld and lost 2 stone. I will continue this as i feel healthier and walk regular with my dogs.

When seeing my consultant it worries me when they start testing for further things.

[Haking]

Hi, I was told by my consultant that in every case is different, and some people live to a good old age and never need a transplant.

You can also check online and you see the same answer. The liver is one of the most important organs in the body, so relax and try to put it out of your mind, have a healthy diet walk or exercise and live a happy life as it should be, don't put unnecessary stress on your liver. No one knows what the future hold, they might come up with something that reverses the condition. Autoimmune disease is affecting many people and I'm sure before long there will be a cure for it.

[janine541]

Yes im sure too

[DoreenD]

I was diagnosed over 30 years ago and still doing ok without transplant.

[janine541 in reply to DoreenD]

Exellent do you get many symtoms and do yoh have AIH

[DoreenD]

Hi Janine, I have fatigue all the time and itch flares up at times. No I don't have HIA.

[skdavis59]

Hi Janine. I have PBC/AIH overlap also. I was diagnosed eight years ago but believe I have had it a long time. My liver enzymes have been elevated for over 15 years. I have fatigue, muscle and joint pain, and some itching. I Also have osteoarthritis, hypothyroidism, neuropathy, Chronic Veinous Insufficiency and lymphoma in my ankles and legs. My liver enzymes stay pretty normal except Alkaline Phosphate. It stays elevated between 160 - 190. The last scan I had was good. I am getting a Fibrosure test soon. I know it could be a lot worst, so I try to remain positive and I am thankful that it is not worse. I know my limits and have to have a lot of rest. When I can, I walk for exercise and try to eat healthy. I have never smoked or been a drinker.

Wish you well!

Sharon

[Sun65 in reply to skdavis59]

Wishing you well

[janine541]

Aww I wish you well