PBC Foundation

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Awaiting confirmation I have PBC

Hi everyone.

I am new here. Not happy about being here! but extremely thankful that there is a forum of others with the same illness I have been feeling very alone and depressed since my bloods last week and my specialist dropped this bombshell on me in a very rough way. Telling me its as "rare as hens teeth" etc etc. I thought I was going to die by Christmas the way he put it to me.

Anyways, I also have Hashimotos Thyroiditis (diagnosed in September) so these last few months have been rather tough for me. I am 37 with children, 5, 8 and 9.

I am struggling with the idea that I am "sick". Hardly ever been sick in my life - even with coughs, colds etc. I always imagined I would lead a lovely long healthy life so this has been a real kick in the guts.

Just wondered how many of you have had liver transplants, or now long it is since you have been diagnosed. And how your health is once you are on any meds? Also anyone else got another autoimmune with the PBC?

Would love to hear from you

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34 Replies

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Hi Whitestar. I had a transplant in 2004 only because I was not diagnosed until my liver was badly damaged. Five years ago PBC was found in my new liver and I started taking Urso straight away and my liver function has reamained stable ever since. I also have thyroid problems which is another autoimmune desease and often goes Han in hand with PBC. The thing to concentrate on is the fact that the majority of sufferers live to old age and usually die of something else. Have you joined the PBC foundation? They are a fountain of information and great support. Their website is pbcfoundation.org.

Hi there, thanks for this. Im feeling a lot calmer after reading other peoples stories on here. Thank goodness for these forums! I was just getting over the thyroid news and I was landed with this too Lovely to talk to others in the same boat. Thanks

Yes I also have Hereditary Spherocytosis and I have had PBC approx 10yrs. I am on Urso tablets for that and I have led a fairly healthy long life as did my father with same thing to 87 (very active). Please look up PBC Foundation online and join them. Marvellous magazine and information. You are not alone helps a lot. You may never need a transplant just enjoy as healthy life as you can.

Thank you for your reply. Is the spherocytosis another autoimmune? Im so thankful many of you on here are doing so well after many years with this illness. It gives me a lot of hope and I feel a lot better. Many thanks

Yes my father had hereditary Spherocytosis an auto immune blood disease that obviously if you are strong you can live to a ripe old age with. Youdohave to guard against aneamia and jaundice. But usualky after Splenectomy you are SO much better. Then after that you have vaccinations and antibiotics to guard against Pneumococal Septicaemia because you have a very low immune system. If you look after your diet take mukti vits have gentke exercise and LOTS of enjoyment e.g. singing etc you can have a long happy life withlots of ailments (don't let them control your life)

Hi Whitestar I'm sorry your consultant was so insensitive. I was diagnosed 3 years ago and put on to urso. My consultant was very reassuring and told me I would probably die of old age before I needed a liver transplant. My LFT's are now normal although I still have the fatigue, bone pain and itching however, I have been horrified at some of the things said by " medical professionals". Please look at the PBC foundation. No scaremongering just facts. My consultant gave me their booklet on my first visit. Try not to let it get you down. I have good days and not so good days but hey doesn't everyone? Take care x

He truly has a shocking manner. Very insensitive. He mentioned he had another lady with these results and didnt know what happened to her as he never saw her again. At the time it sounded like she crawled away and died very quickly (was in a bad head space and no doubt misunderstood him!) I have joined the Foundation and read through their facts and feel a lot better. I hope to live to a very old age and will do everything I can to make sure that happens. Thank you

These specialists should learn to explain properly and have a better more understanding manner. Mine was a shocking experience too until I found the foundation online. Noone told me!

Tigger358 said it all exactly right. Contact the foundation and get their magazines. Xxxx

Hi whitestar.. I'm 34 and I was like you never sick with colds etc.. Enjoying life.. Just married Sept 2012.. Thinking I'd try for a wee family etc.. Then in May random blood test for sore joints shows pbc.. I already had psoriasis a a raynauds (both auto immune)... Now they're telling me I have scleroderma (another immune disorder)... I was like you are now upset panicked etc.. Now I just get on with things and try to deal with any symptoms that arise and generally look after myself a lot more than I used to... One things for sure I value all the things I have in my life a lot more.. You are very blessed with your three little ones, I just hope and pray that I will eventually have children.. I've been told I'd be high risk due to the scleroderma as this may attack any child I do carry etc :-(..

Try not to get too anxious you will feel a lot better all round if you don't.. I've felt considerably better since I accepted things.. I don't even think about things everyday now.. And it used to consume almost every thought.. And keep talking about your feelings it helps too..

Hi Whitestar . I was diagnosed in 2011 and was put on Urso straight away. By and large my liver function has been stable. Perhaps not as good as I would like but my specialist is not that concerned. The majority of people do not die of PBC they die with it. DO NOT look on it as a death sentence - it isn't. Do become a member of the PBC Foundation - they are a mine of information and very supportive.

Thanks so much for your reply. I have just joined the Foundation and already feel a bit better reading through their website. I was so panicked at the start of the week I felt like I was having heart palpitations after receiving the news that I probably had PBC. Im having a lot of scans, xrays, ultrasounds done tomorrow to see what exactly is going on. Apparently my liver results are within normal range though. Appreciate your reply, thank you

Hello Whitestar.

Well I was 46 back in 2010 when I was diagnosed with PBC. I had stumbled across the condition myself earlier that year as I wanted to see if I could find out what was up (I suffered bad fatigue at the time and was itching. Itching took me to the doctor) after blood test after blood test kept showing up that it couldn't be this or that but the LFTs were still slowly rising. There was a blood test to check whether bone or liver related and that was when I was informed it was liver. Off I went for a scan which showed virtually normal organs. This was July 2010. I never mentioned PBC to my doctor nor did he mention it as I had hoped I didn't have it (or another condition - PSC - I cam across same time). I'd never been sick as such myself nor did I ever suffer with colds either. I was referred to a hospital consultant when the doctor said he had exhausted blood tests that he could do and when I finally went beginning of Nov., I had the AMA (and ANA) blood test and on 3rd Dec my doctor rang to speak to me and when went to surgery told me I had PBC (but I knew as I asked the receptionist who rang to say I'd to call in and doctor wanted to give me meds., asked what meds. Knew when she said urso).

I think it hits hard due to the fact you hear the words 'No cure' and the other 2 'liver transplant' (though it wasn't my doctor who said the latter 2, it was the hospital consultant). I gave my husband of just over a year the option to leave. He wasn't fully aware of PBC like I was at the time and he'd not taken things seriously at times during 2010. We'd only been together 2yrs by that time as I was widowed back in the 1990s and left to raise 2 young children on my own.

I think in the early days you go through allsorts of emotions and even anger creeps in. I started feeling a few initial side-effects from the urso, heartburn was one and I did think the itching felt worse. But I continued to take the urso and when I returned for repeat bloods Feb 2011 and got a good result I decided to carry on taking them. I saw the hospital consultant for the first time after diagnose Feb 2011 and it was he who talked briefly about PBC in my husband's presence, he then ended with "It can end in live transplant" but he didn't overly-stress this due to the fact with PBC you never know which way it will go for anyone in the early days when the bloods are not overly-bad even if abnormal. He said I'd just a bit of 'inflammation' to my liver and didn't go into anything like stages which I have to say I don't agree with. I don't want to know.

I do think with PBC now it is far better to simply just try to get on with life after you do realise that there is nothing at present you can do about it except look after yourself even better than you thought you were. Forget about what could happen as it might never do so and concentrate on living life to the full.

I have just gone 3yrs since diagnose but I was informed by the hospital consultant that I had probably had it 'a few years'. I'd not have known I had it but for the sympton of itching appearing as I rarely frequented the doctor and that is my wish now but it seems to be up and down.

I found that it did take a bit of time for things to settled after starting urso. Nothing to do with the urso as within a few months I was side-effect free. The itching was up and down but seems to be tolerable. I only tend to itch around 11p.m. at night and it's all gone by 5a.m. It can interrupt my sleep if I wake during the night as within 10mins or so I can feel the itch start up again. I made a few life changes after diagnose, my husband decided I should quit a demanding full-time manager's job that would not get easier over time, said we didn't need the money and I still have an income for life from my late first husband. He said we could do a lot more things with just him booking holidays off work that we struggled with during 2010. So I quit. Went back into the voluntary sector once again.

The fatigue did leave me fairly quickly so I don't actually have that any longer, just the itch and the abnormal LFTs of PBC.

I don't tell local friends I have PBC. I have found it difficult at times with my family as by looking so well it's hard to believe that you do have some condition that could eventually become a downfall. Some just think because you pop a pill every day and things seem to be ok at the time then everything fine but we know it could be different.

As you get on with life and take PBC as it comes for the bad days and the good days you slowly reach the year mark and say you're still here and then it does feel much easier. You then get through another year and then like myself another year and I don't actually think about it until I reach for the urso or am itching at night. Some days I get fed up of it if I've not slept well previous night but others I just feel good that I'm me.

Thank you for this. Its wonderful to have this support group to discuss worries with. I had never heard of PBC before and dont know anyone with it.

I was always tired but thought it was just from having young kids and always being on the go. My itching started about 2 - 3 years ago. I went to the docs a few times and always came away with some aquos cream or something similar which did nothing. One doctor mentioned about 1.5 years ago there was a liver condition which could cause this itching but as i looked so well she wouldnt bother testing. So obviously I have had this for a while. Im a bit nervous as I am on Telfast 180 at the moment (ended up getting hives and angioedema - swelling of the eyelids and lips) which has miraculously sorted out all itching and swelling, i see I shouldnt really be taking them as the instructions say avoid if you have liver disease. Which I didnt know when I was put on them.

My main itchy spots are my back and front (prob where my liver actually is) and my legs. Is this is the same for most or is the itching random?

Sorry to hear you have been diagnosed but hope you feel reassured about the condition, although why the dr couldn't gave done some blood tests earlier on is a question?

I was diagnosed about 3 years ago, put on urso and I am pretty well, no itching or liver damage.

However I too had telfast, as I was allergic to the urso capsules, but the telfast didn't seem to cause any liver problems and did get rid of the hives, so you shouldn't worry too much. Just check with the consultant.

Take care of yourself, I found out about this time of year and it was a shock, my brother has another liver condition, so I knew a big about it all....... But it isn't a life sentence just a life change.

Lou x

Hello again Whitestar.

Actually as I understand it itching can occur with any liver condition/disease.

A lot of medications state you have to avoid if you have liver disease but I think some of it a case that the pharmacueticals are covering themselves. If you are taking any additional meds and a doctor knows then the liver function test (LFTs) can be noted as to whether that particular medication is helping or not doing so.

I have itched all over my body in varous places at random over the last few years. At night my main part is my legs from my calves down and my toes. I can even feel funny 'down below' at night time. My arms to my elbows also tend to be itchy. I feel perfectly normal in the morning when I rise and right through until early evening then I start feeling prickly. I know it is due to the fact that when I rise of a morning I've not eaten for abut 12/13hrs and my system is probably cleared of bile by then but come early evening after a day of breakfast, lunch and evening meal it all starts up again.

I don't take anything for the itch. In early 2010 my GP gave me a script for Piriton which I got over the counter as I knew you could buy it cheaper than the same on script. I took that for 2 days and it made me feel sick but it wouldn't have done anything as it's for allergic reactions and allergies and PBC isn't. Some on this site have stated they take the antihistamine med that makes you drowsy so they can sleep through their itch at night but the one I got didn't make you drowsy.

There are other meds that can be tried for the itch (Questran or colestryamine is one) but for now I won't take anything other than the urso.

It is late on this side of the world and I am tired and ready for bed but I just wanted to reassure you. I am almost 70 I know I have had Scleroderma since I was 22 and probably even younger. I have lived an almost normal life except for being less fit than I would have liked to be.

Was not diagnosed with anything until 2003 and since then have been told I have Sclero, Sjogren's, PBC and Rheumatic Heart Disease. My symptoms (except for extreme fatigue and Anaemia) are well controlled I take all the medications I have been recommended to and know my own limits.

I have 2 grown children, have helped my husband run his own business as well as our home and family and now we have 3 lovely granddaughters.

If your Scleroderma has not had a sudden emegence of which you would be very aware,and I think that if that was the case you would not have been surprised to be told that is what you have, you will very likely just jog along like so many of us here. Take all your worries to your GP (find a good one if you have not already) and don't assume anything without getting checked out.

Thanks Judy. What is scleroderma? I havent looked it up but i see that whatever showed up in my bloods could also / as well as point to systemic scleroderma. Is there a difference between the systemic version and scleroderma? Im getting to the point of not wanting to read about things that effect organs! I thought it was bad enough worrying about thinning hair and weight gain from my thyroiditis (all stupid vanity issues!) but now that internal stuff is going on I really dont care how much hair I lose or how fat I get as long as the important stuff inside is okay and I see my kids grow up. Jeez, nothing like a shake up to make you remember the important things in life is there? I hope with all my heart that I can get happily to 70 as well. Thats wonderful that you have been relatively unaffected by your illnesses Thank you for reply. It means a lot.

Hi Whitestar. I have had Crohn's disease for 20 years and was diagnosed with PBC 3 years ago when I was put on Urso. I work full time in a very large organisation and recently got a promotion managing a team of people in quite a pressurised role. I lead a fairly normal life and I don't think people are aware at work that I have these two illnesses. I don't hide the fact, HR are aware, but I don't think other people know so please be assured it's not the end of the life as you know it by having pbc. I get tired like a lot of the people on this forum so suggest you go to bed if you need to when the kids do and try and stay positive. Good luck x

Hi Whitestar!

I am sorry to hear that you have to also go through this thing as I call pbc. Sometimes I think that this diagnosis would not be so scary, if there would not be options such as liver transplant or chirrosis. I am still in that stage that I am trying to accept this thing. I have also little children, and even I am 40, I still dream one more... Having a midlife crisis?! But I don't know what the doctors think about that. Before this thing I have always been quite healthy, nonsmoker and I have been drinking alcohol very rarely.

I have a feeling or intuition that there will be good news for all of us who have this thing. I don't know why, but I do. At least I feel that life has become even more precious and even though I am a dreamer, I might even carry out some of those dreams.

I have decided that I try to enjoy always the present, because life can have all kinds of surprises.

Whenever you feel that you have a need to talk to someone who understands your feelings, we are here for you.

Hi Whitestar, So sorry you had a negative experience with your consultant. It is a shock to hear you have PBC but as others have said as time goes on the numbness and shock will lift and you will pick your life up again. I have sjorgrens syndrome as well as pbc. I found the DVD from Liver North very reassuring, it really helped myself and my family, you can order one from them. As each week passes you will feel more positive again. As for your consultant - I hope Santa brings him a personality transplant.

Hi Whitestar, I can't really add much more to the excellent information that everyone here has given you, other than to say I was diagnosed 22 years ago (I was 45 at the time). Extreme fatigue was what sent me off to the doctor's in the first place, and has plagued me ever since, along with all the other symptoms (unfortunately, taking Urso hasn't elevated any symptoms for me, as it has for others). Oh, and I have gathered a couple of other auto-immune conditions along the way (Sjogren's and Psoriasis) - ~ grin ~ I'm now thinking I've wasted years at Uni knocking myself out adding a list of degrees to my name, when all I had to do was sit back and wait for the only 'list' I would use to come along. Lol.

Hi,

I have sat on this for most of the day thinking about an answer to you - Oh Dear you know not what you ask!!!! What is Scleroderma, where to start??

First of all, I hope you haven't started googling it because you can scare yourself to death if you read some stories about Sclero. The way Systemic Scleroderma is diagnosed is primarily by blood tests but mainly by associated symptoms. That is, you can have a positive ANA of a particular pattern but without symptoms you may never develop the full-blown disease. A positive Scl 70 or ANA with a ratio of 1:1280 and Centromere pattern for instance are regarded as positive BUT ONLY with associated symptoms.

Symptoms which you may already be aware of are Raynaud's Phenomenon, Telangectasia (small groups of tiny capilliaries just under the skin on fingers and face which cause 'spots' which blanch when you press them),Calcinosis which are lumps , tiny or large, under the skin of calcium or milky fluid, Eosophageal problems like difficulty swallowing or reflux, and lastly Sclerodactyly where the skin of the fingers between the last two joints is stiff and 'tethered' to the tissue beneath.

Apparently Sclerodactyly is the one which is more indicative of organ involvement and that is where I fit in. However, keep in mind that blood tests alone to NOT indicate disease. No doctor unles he knows Scleroderma inside out should suggest Systemic Sclerosis to you. If you still think you may be in line please get yourself referred to an expert. Presumably you are in the UK and I know there are several centres of excellence as well as Support Groups in London and other centres.

Good Luck

Thanks Judy. Im still waiting to find out what I have. My liver specialist appointment was a waste of time last month as my liver results are all fine and my liver scan was fine so the specialist had nothing to work with. Im wondering if its more along the lines of scleroderma then PBC although I wish it wasnt! Im so terrified reading about all these things. I dont want to read about the auto immune diseases but I cant seem to get anywhere with my doctors with working out whats wrong with me. I feel like I need to tell them whats wrong. My ANAs came back 1:80 titre ? Whatever that means. Im so scared. I keep looking at my beautiful young children and just feel sick that whatever I have will end up taking their mother away from them at a really early age Stress apparently makes all these illnesses worse so Im trying not to stress but its bloody hard! Im not sure whats worse - knowing or not knowing which auto/s I have. I was just getting my head about the hashimotos one.

Hello you normally have a high titre of the AMAs for PBC diagnosis (though some patients show up with negative AMAs). Usually having the ANAs can mean something else (cannot say what your ratio means, I just got informed from the hospital consultant on my diagnosis letter I got a copy of that I had a 'high titre' which gave him along with the abnormal LFTs and a few other abnormal bloods and the itching (back in 2010 fatigue - no longer have that, left me sometime later 2011) diagnosis of PBC).

Hope you find out and get a result. As difficult as it is, try to switch off from thinking about other things that you might have and do as I do regardless, get up each day and carry on as I used to do normally despite most of the time feeling tired due to broken sleep throughout the night if I happen to wake and then I'm itching.

I am assuming that you have a further appt with a consultant?

In the beginning of being informed you have something you are pretty much devastated by but then slowly you start to come round and realise that perhaps it was nothing you did to develop it and then after the initial shock you try to get on with life. If you don't try to do so it will simply take over your life and then in my opinion it would be a sad loss of enjoying oneself when possible and doing things that you might never have thought you would do as it really does change your perspective and outlook on life from them on.

Hi , I know exactly how you feel. When I was told that I have PBC I thought I was going to die also, not true. I was diagnosed in 1995 and still here. I also have a thyroid disease and mine is called Graves' disease. I was told that PBC and thyroid disease go hand and hand. I am on ursidol 300 mg and of of course thyroid med. Try not to dwell on these disease's just will bring you down. We are lucky in a away, it can be controlled by medication's. But you must remember do not drink at all and smoke. I live in the U.S.A. and we have the best doctors and specialist in the world and this told to me by my liver doctor. I do exactly what I'm told and I'm still here after almost 19 years and work 46 hours a week and I'm 66 years old. So hang in there and enjoy your long life ahead of you.

Thank you. That is very reassuring

hello, i am new here too and i am awaiting confirmation I have PBC too. A liver biopsy and scan is schedule for me this coming tuesday. I was stunned when heard the Dr diagnosis 3 days ago. I searched the internet and it says something about 10 years lifespan. This 3 months has been hell for me, going to hospital , doing blood test, awaiting results. I couldn't sleep some nights with all this worries and what if..

Hi there! I'm new to this forum but have been a member of the foundation since my diagnosis in 2004. I felt much the same as you as I found out through a cc letter sent to my GP from the hospital Gastroenterologist! I just saw the word "Cirrhosis" and was devastated, thought I was going to die! Being 36 at the time with 13 and 3 year old children, my husband and I felt that our precious time was limited. I trawled the internet, found this foundation and rang them. I spoke to the wonderful Collette and she reassured me, advising me to ask my GP for a referral to Birmingham QE Liver Unit as I live near there. I was so lucky to see Professor Neuberger who answered all of my questions and said I would be more likely to die WITH this disease than FROM it. I take 1000mg Urso daily and have regular Liver Function Tests and Scans and am happy to report I am in good health, all things considered I no longer feel the future is bleak. Like me, just be a glass half full person and stay positive x

Hello Whitestar. I am a 61 yr old grandmother. I've always been very fit and healthy. I was first diagnosed with hypothyroidism about 10 years ago, 2 yrs later it was Type 2 diabetes and then about 5 yrs ago PBC. I take medication for all of these and although I am often very tired I lead a normal life. It would seem that a transplant is not inevitable and that most people die in old age WITH PBC and not because of it.

Hiya I'm Jane. I was diagnosed with pbc in 2010. Shortly after I was also diagnosed with autoimmune hepatitis, the two conditions together are sometimes called overlap syndrome. I am now also portraying symptoms of raynaulds disease. I'm happy to answer any questions you might have.....easier than typing it all it the hope some info might be useful. I do recommend you use the info the foundation can give you and if you can and they are still doing workshops try and get to one. It made such a difference to me meeting others with the condition and someone else with overlap syndrome.

Jane

Going of topic a bit here but does anybody else sufger from dry itchy eyes ?

Hi Kittysue, I've read in past magazine issues that quite a few PBC patients suffer with this. It is called Sjogrens Syndrome and is also an autoimmune disease. It is treated with drops and/or ointment

Am at doc's on Monday , will ask him about it x

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