PBC

[barotacnuevo]

Just found out that I'm AMA positive. My symptoms are itching and slight pain on my right lower rib. If you're AMA positive, does it mean you have PBC? I have read too much regarding PBC and I'm very worried and scared. My husband told me to be positive and I'm trying to.

[littlemo]

Hi diagnosis of PBC is usually through blood test and symptoms. Not all people who are AMA positive have PBC think I read somewhere its 95% of people who have PBC have a positive AMA. If you do end up being diagnosed with PBC do not worry it is a SLOW progressive disease many people have PBC and as have no symptoms, dont even know they have it. YOU can still live a long happy life with PBC you may just need to make few adjustments to keep yourself healthy.Have you seen a consultant yet? Another important thing someone once told me too is that you are most likely to die WITH PBC ( i.e. from some other cause) than FROM it. Hope that helps.

[donna30]

Hello, I was diagnosed just two weeks ago age 30 and like you i was terrified as i just read too much, What i can tell you is two weeks on i am slowly becoming more positive. This site is such a huge help the ladies are amazing ask them anything you want to know and only get your info from here or the liver north site. I was told to get the dvd from liver north, i have watched that as have my family and it really puts your mind at rest. You will live a long life, i was in your shoes two weeks ago so i really understand how you are feeling its not easy but really take all the ladies advice on here it will really put you at ease.

[Ginger_11 in reply to donna30]

Hi Donna, You will go through a period of shock, being frightened, worried and trying to find out about it and being overwhelmed. Gradually, you will come to terms with it, realise you cannot do anything about it so just have to carry on with adjusting to having this condition.

There will be days when you are totally exhausted and days when you can run with the wind. It is about managing the symptoms, taking each day separately, and going with the flow. If one day you feel terrible, just sit and read, or do puzzles or watch tv, knit, whatever you need to do that is more sedentary and don't get down about it. This may just be the new normal for you. On the days when you feel ok, go out and do something, but make adjustments that this may tire you so take the next day easy. I actually make a list of what I am going to do the next day (no further than that). This gives you a target to aim for so that you push yourself out of the depression that you may fall into which is easy to do when you realise you may not have enough energy than you did before. Sometimes I do not make it, but will do it the next day if I feel ok. This is not a failure on my part, it is just listening to my body and not over pushing myself when I do not feel well enough.

I did find the Liver Trust website more informative with regard to the actual function of the liver and it's connection to other organs in your body, so that may help you. All this takes time but you will adjust.

[barotacnuevo]

Hi, littlemo and donna30. thank you so much for the encouraging words of support. Appreciate so much. This website is great. I feel I'm not alone, reading other people's stories. My worries are lessen, although still scared. Praying that everyone can overcome whatever battle we are facing. Thanks again.

[Fudger126]

Hi ladies,

I like yourselfs once I found out I had PBC I was so scared to what my future would hold, I was 24 at the time. It upsets me that still to this day when someone new finds out the have PBC they feel that they are going to die!!! Why are these doctors making us feel like this! Then we come onto the Internet and it reads no cure.

I have had PBC for 9 years and I like others thought I wouldn't reach an old age, or have children or watch them grow up, but within the 9 years nothing has changed I'm very glad to say. I also understand that that isn't the case for everyone. I worry constantly when I'm tired, or start itching, or pains in my wrist has my bloods changed? But then sometimes I think to myself I cannot do this for the rest of my life!

Sorry ladies for my rant, I just wished that the doctors now more, and when they tell someone that it is PBC they do it with a little more reassurance.

Donna30 I'm glad ur feeling a little more optimistic, and u should be.

Barotacnuevo - you will be ok, remember we are all in this together, any questions or information, the girls and guys on here will answer.

Take care all, and sorry for the rant. I will say a prayer tonight that we will all be strong enough.

Xxx

[donna30 in reply to Fudger126]

This is so true, having now spoken to many ladies so much older than myself who have known for decades i wish i had known this the day of my diagnoses. A liver transplant is a last resort not many diseases even have that as an option and i have been told only about 5% of pbc sufferers ever need one. So please keep your chin up harder said than done i know. Always here to chat i do not know the ins and outs as yet but know you should not waste weeks, months upset. I feel stronger each day it takes time i have ups and downs but suppose its early days. Everyone is different though. Please dont feel you are on your own keep strong its defo not a death sentence. I am now trying to look at it as a positive to enjoy life to the full xx

[Magnolia in reply to Fudger126]

Absolutely the drs need to present this a better than they do. When my first GI dr. told me of my diagnosis I left the office thinking how much longer do I have. He said " You might live to be 80, but you will need a transplant.

And as far as I knew, people had a slim chance of surviving after that. But none of that is so! Later another dr. told me had a patient that had lived so far 16 yrs with one.

Also this dr. wanted me to go right away to a liver clinic and get on the list for a transplant, meaning an evaluation done. I studied enough, that I learned before I ever got there, that my bile numbers needed to elevated before they considered doing one. And the PA there agreed with me, mine were not high yet.

All of this was in 2003. I've been on ursodiol ever since, and my liver is still not scarred or enlarged. My bile number actually came down. I have actually had this disease for 20+ years, it's just no dr. could figure out what it was.

[June9961]

Hi, my sister had the transplant and had a good quality of life for 15years. I have PBC also. If and when I need a transplant I will be happy if I have the same time. In the meantime the only thing that bugs me is the pains, fatigue and bloating (sometimes I look 9 months pregnant haha). Just wish the experts could get their act together.

[wendyh]

please contact the PBC FOUNDATION they are a great source of info and will send you contacts in your area as well as an information file.

[Hidden]

Hi, I was diagnosed with PBC in 2006, didn't have a clue what it was. I joined PBC Foundation, they will provide you with lots of information.

I just attended Professor Mills clinic in GGH in Glasgow, they are all so very helpful.

[barotacnuevo]

I'm already a member of this Foundation and I have a very good feeling of this site. Thanks for all the responses and for the great support of all the members. I'm doing great at the moment. I concentrate on being healthy and keeping fit, do some exercises, trying to stay well. My LFT is back to normal, just a bit of low platelets. I had my blood test yesterday and will see the results next week. Praying for everyone, take care.

[Dolly67]

I tested AMA positive 5 years ago. Also had elevated liver enzymes alt and aft. Was told to lose weight and levels went down but AMA remained positive. Usually these two factors; positive AMA and elevated liver enzymes does mean PBC. I just had a liver biopsy and got my confirmation. Early PBC. Soooo all I can say is put yourself under the care of a good hepatologist. I am waiting now to see if I go on Ursiodiol.

I live in Miami, Florida, female, married, 67 years old. I am very upset. Can't believe it's happening to me.

The worst thing anyone can say to me is .....be happy it's not worse. No one wants anything. Stay positive like your husband says. Good luck.

[barotacnuevo]

Hi, Dolly67, thanks for your response, I'm also 67, female, from Melbourne, Australia. I try to put my mind at rest (easy to say) after that initial shock of knowing I'm AMA positive. I have got over that now. My symptoms come and go, I'm suffering from the terrible itch starting before bedtime and I just deal with it when it comes.

I'm seeing a good hepatologist every six months but not on any medication, yet. I'm also paying more attention to my diet then exercise, learned from this site to "eat little and often". Hoping that these extra things will help.

Good luck and God bless.