Hi I'm new here :-( having problems coping being newly diagnosed. I have a neg AMA but biopsy confirmed my dx. Is this familiar to anyone?

[Cher29]

I can't help but think I have something other than PBC causing my liver damage.. Appreciate any thoughts... Thanks!!

[Sunny_snowflake]

Hi Cher29!

I was diagnosed end of last year. It takes time to adjust to the diagnosis. Most of my days are now okay, I take my meds (Urso) and focus on my everyday life. Sometimes I get sad, but then I try to think positive. Usually this thing is slow progressive thing and who knows, there might be even better drugs ahead. Just remember, you are not alone. And even this thing is not very common diagnosis, the rare thing does not always mean that it is also something not to cope with. This is autoimmune thing, like diabetes, celiac or e.g. rheumatism.

[Cher29 in reply to Sunny_snowflake]

Thank you for the feedback! It helps to know that I am not alone! I hope it gets easier! Truth is, I loved to have my cocktails and b social. Now I feel like I'm not invited to the party.... I understand it will take some time to get used to the dx.... I will try and be positive!!! Thanks again for your words of support!! It helps!!

[Mcinnel2]

Cher29 - You will have your ups and downs. Iv had pbc for a couple of years and Crohn's disease about 20 years and whilst I'm normally positive last week I was feeling down about it all and resented taking the tablets. Like you I like a cocktail or two and there is nothing to stop you having the occasional one and I normally go onto a Virgin one so not to feel totally left out. My friends actually see me at not drinking a positive thing as we now never fight over whose driving. Try and keep positive and when your feeling low go into this site as we are all in the same boat and normally it does make you feel better.

[Cher29 in reply to Mcinnel2]

Thank you for your thoughts and I wish you well!! True you are not alone!! I pray for all of us so that we may have a lil peace!!

[Hidden]

Hello Cher29.

I was diagnosed with PBC due to abnormal LFTs (liver function test), 2 symptons at the time, itching (still have, night time) and fatigue (long since gone) and a positive AMA result back in Dec 2010. That is when I started taking urso.

I started itching early part of 2010 and just thought due to working very long hours, running about here there and everywhere and that it would just go away after a few changes (if only....). I went to see the GP, he took blood and then started ruling this and that out and eventually it was decided it was a problem in the liver area.

I started snooping about myself prior to diagnose and stumbled upon PBC. Hoped I hadn't got it but things were pointing that way. Nevertheless I waited to see a consultant later 2010 and he did the AMA that day. 6wks later I was informed I had PBC and given urso.

I was 46 at the time (50 in the notso distant future) so have been diagnosed just over 3yrs now.

I had started to make several changes during 2010 and after the first abnormal LFTs I didn't have any alcohol and still haven't. With alcohol it isn't exactly a total no-no, common sense really. I'd say that the odd glass wouldn't be of any insignificant problem but quite a few at one time can actually alter the LFTs.

I've not actually missed any alcohol as I wasn't one for going out, never really had the opportunity over the years due to the fact back in 1993 I was widowed and had 2 young children to take care of with very little family to help.

I think it does take a bit of time for the initial shock of being diagnosed with PBC that you are them informed is something that there is no cure for currently and that you are stuck with it can be rather traumatic at the start. I already knew I had PBC prior to being informed from the GP who relayed it from the consultant as I asked the receptionist when she rang asking me to go in to surgery what medication I was to be given. When she said ursodeoxycholic acid I knew.

I gave my new husband of 18mths the option of leaving me but he said he was going nowhere. To me he hadn't been taking it seriously enough from the beginning and I'd not filled him in what more I knew of PBC. It was at my first hospital consultation following diagnose and 8wks into taking urso that the doctor explained more about PBC and ended with the words, 'In some case it can lead to transplant'. That was the shocker for my husband.

In the beginning I resented taking the urso as I had a few initial side-effects and never being one for reaching for even an headache pill I just didn't want to take a drug for the rest of my life. But 3yrs on I am still ploughing on with the urso.

After awhile I just decided to try to get on with life best I could, forget I had PBC as difficult as that can be later in the day when I start to feel prickly with the itch and often dread the night time and make the most of the here and now. I don't want to waste time now as never know what is round the corner.

I get more annoyed with the doctors, the whole system seems so hard work at times (just getting a print-out from the surgery each time I have the bloods seems like I am asking for something Top Secret!). I get edgy when the bloods are due as I've a tendency to go up a bit and then up a bit more on repeats and then drop down again, seems to occur at the same time of the year.

I've not told more than family, the little family that I have got that is and also a couple close friends. I decided I'd rather just get on and not tell more. Some of my family just do not get it at all, one family member seems to think just because I pop a pill daily I'm ok now, wish it did work like that.

I'm certain as I did, once you start seeing some more positive results with urso (I am presuming you were prescribed?) then you think you've got over an hurdle and then as more time goes and you reach a year from diagnose and then another year, you do start to get back into enjoying life that bit more as best you can.

[Cher29 in reply to Hidden]

This is a very complex issue!!! Thank u for sharing your story... I am 47, work full time as a nurse, newly married with a 16 year old. I'm hopeful it will get better. I am a bit of a tender hearted wimp and can't hold back the tears at times!! I may see a professional to help me cope! Trying to do it "ALL!" With a happy face. I'm thankful for everything I have and understand it can always be worse!!! U are an inspiration as well as the others!! Thanks for your words!!

[Hidden in reply to Cher29]

Hello again Cher29.

There are times when you feel that you are 'hard done by' with this and wonder 'Why me?' but I used to then think of others who are much much worse off.

My sister who is a year younger than I am suffered a sudden brain haemorrhage due to an aneurysm 3 months ago and though she appeared to come through surgery and wake up she is at a sort of standstill at the moment.

Though she seems to be fixed, she might never be the same again. Whereas this PBC cannot be cured (as yet) I can get up every day, walk about, communicate with the world and somehow feel I've not got it as bad as a lot of others out there.

I was not married a year before I started itching and though my husband and I made contact back in 1996 originally (he advertised for penpals as he was in the army and overseas), we never met up in person until Nov 2008, got married 6 months later. I did feel I'd somehow robbed him when I got diagnosed in 2010 but at the same time I thought I'd struggled on for years raising 2 children alone and had another chance to be happy again and then it seemed to come tumbling down.

Having PBC makes you evaluate what is more important in your life though for me I always knew from losing my own mother when she was young and then my husband.

It's early days yet for you but as the weeks and then months start to tick by you should start to feel much different about it all. I've been fortunate so far in that in the last 3yrs since diagnose I've been pretty much ok.

If you feel you need to seek a professional I'd say do so. Often someone being an outsider can be a lot of help as that person is detached from you unlike your immediate family.

[Jtxx]

I am also AMA negative with PBC and diagnosed by a liver biopsy 3yrs ago. (Only 5% of us are AMA negative). I am also SMA positive for AIH so I have PBC/AIH Overlap Syndrome.

I am one of the lucky ones that do not have the itch. Sometimes you will hit a brick wall (figuratively speaking) and just have to sleep but if you listen to your body and pace yourself these are not so often.

I still go out with friends and do not drink. People will get used to it and it will not bother your true friends.

Just take the Urso and get on with your life. You are more likely die with PBC than of it.

Stay positive and take care. X

[Cher29 in reply to Jtxx]

Thank you for your words!! It helps!!! I know that we all are here to help each other!! That is a beautiful thing!!!

[NotorDJP]

I'm not officially diagnosed yet, but I know I soon will be. I have been having trouble with this too, but after my Ultrasound showed it was normal for now, I'm feeling much more optimistic. I know I can take a turn for the worse at any time, as that is the nature of this disease, but I'm trying to just live my life and not worry too much. I know I will have times when its bad for me, but I will try to get through that then. My prayer right now is that I am able to get in with my GI doctor soon so I can start on mediciation and they don't make me do a biopsy. I really would rather just start on treatment and then do a biopsy later if they think I'm not responding. In the US they tend to want to do a biopsy as normal part of diagnosis and only consider the diagnosis complete if you have one.

I have high AMA titer, High GGT and High ALP. That is about it for me. I have some abdominal discomfort and some fatigue that I can't really attribute to this, as I also have some gynocological issues. This group is a great. I love coming her for a pick me up and good information. Hope your mood improves.

[kristieerhodes]

I was diagnosed 9 years ago and I am AMA negative; apparently 5-15% of us with PBC have the more rare form of it. I still take Urso, even though it doesn't helps maintain acceptable liver functions, but without it, I would be worse. I'm waiting for the new AMA negative med to be released sometime this year for compassionate use. The main thing I can tell you is to stay positive and try your darnedest to to live a normal life, minus the use of alcohol, tobacco and lots of bad foods. Oh, don't skip the occasional slice of pizza or delicious cheeseburger; you deserve to treat yourself.

[Cher29 in reply to kristieerhodes]

Thanks for the honest feedback! I've been on ur so for 3 weeks and assumed my liver tests would improve. I see that this is not always the case... 9 years... That itself is inspiring!! I will b positive!!!

[Axl888]

Hi there I was diagnosed in September 2009 by chance when other issues were being investigated. I also have AIH as well as PBC. At first I was devastated and extremely upset. But, since being on URSO and other meds for the AIH I am so much better in myself now. I used to suffer terribly with fatigue but ddn't realise why. Always at the weekends, I would have to have an afternoon nap. I don't need that now (only occasionally). Most of the time these days, I don't think about having PBC. I don't worry about it anymore. I personally know 3 people who have had a liver transplant because they have PBC. Their lives have been transformed. Not everyone will need a transplant but if I ever have to I wont be so worried knowing what my friends have gone through and how it has changed their lives for the better. Its understandable that you are going to be scared initially but you will start to feel better soon. We are all different and some have more severe symptons than others. PBC has never stopped me from going out and having a god time with family and friends. You don't need alcohol to have a good time. I always drink Becks Blue the non alcoholic version of larger or similar or have Scleur instead of wine. I also like tap water with ice and a slice of lemon and getting up the following day without having a hangover is great I will have alcohol occasionally. My consultant said it wouldn't hurt. Life is for living and you don't know what is around the corner. Focus on what's good and be happy. I have a fanbulous support network of fellow PBC sufferers on Facebook which I find helpful. The PBC Foundation is also a good source of information and will put you in touch with people with the same condition who live near you if you wish. This site also is a fab support. You will start to feel better soon as you gain more information and understanding.

[Puddles]

Hi Cher29,

I am 48, also a nurse, I have 2 young kids and was diagnosed in May last year with PBC. It is quite overwhelming when first faced with diagnosis, and initially it was all I could think about. I wanted clearcut answers to all my questions about what symptoms I would get when, how long would it take to progress etc. etc. Over the last few months through the experiences of others and reading as much information from reliable sources as I could find, I have been able to accept and cope much better. Particularly I have learned to accept that there are no definite answers to all those questions, but that for most PBC is a slowly progressing disease and that so many here have lived with it for very many years. It no longer occupies my every thought, and I have returned to living my life and making the most of feeling well for now and enjoying my family. I trust my Dr, and that if and when complications arise, we will cross those bridges then - and who knows what other new developments will come about in treatment over the coming years.

There is lots of support here and you are not alone.

Take care

Puddles

[Cher29 in reply to Puddles]

Thank you for your response. Truth is that it has gotten better since initial dx about a month ago!! I'm learning how to live with this and emotionally I have accepted this and have been trying to enjoy every day!!! Appreciate your thoughts and grateful for all the positive feedback you and others have shared...

[Ellean]

... One minute your here the next your there. Feeling you have time, healthy etc then you get thrown to the there. ... The opposite unhealthy and time limits being juggled in your mind etc.

How much of a future do you have, what lies in front of us.

How much of a future do you have with pbc - is really the same as how much of a future you had before. We don't know what lies in front of us - we cant control life. If we did it would be free from pain and sorrows .......

One thing I found was that everything became beautiful and bright, my appreciation of life lifted life/ mundane things to a different level. So I can now embraces my days and enjoy. Relish them because they were taken for granted. It can make every day special and the people who are in it.

"With ever up side of something there is a down side and with ever down side there is an up".

I hope this makes some sense I'm not very apt on occasions.

[Cher29 in reply to Ellean]

I appreciate the comment! I am learning how to cope better these days!! And feel sooo grateful for everything in my life!! Thanks again for your words of encouragement!!!