Does anyone just have pbc?

[mabbott]

I keep seeing people posting more than one autoimmune disorder and I was wandering if anyone has only been diagnosed with pbc. Has me so worried.

[Brummi]

Hi mabbot, I was diagnosed with only PBC. Firstly let me say the disease is not choosy who gets it, young or old. As an older guy ( going grey) I had a liver transplant in June 2013, there are things you can do to help yourself. Please understand that I do not know you. If you drink be moderate, if you smoke consider giving it up or cutting down. Try to be stress free , these will help more then you think. If you want to chat I will listen don't forget I have been through it and recently. Sorry if it sounds like a lecture but it's not meant to be, there are people on this site who have had the disease for 10yrs or more. This is a good site and we try to help each other. Please ask if you want to know more please ask....Take care..

[Hidden in reply to Brummi]

Hello Brummie.

I never consider PBC a disease though it is said to be. I tell people it is a long-term condition as to me it sounds far nicer.

[Brummi in reply to Hidden]

Hi peridot, Since the first day I was told I have PBC The consultant said it was a disease, so I cannot fool myself by thinking of it any other way. When telling people. about it in the first place they would say arh! a drinker or a drug taker or smoker. My reply was never been any of those , once they listened they were. more understanding. Also mine was in the very advanced stage, if the way I put upset then I apologise , I consider my Diabetes more a long term condition.. Again I'm sorry if the way I put it it offended you...

[Hidden in reply to Brummi]

Hello Brummie, no offence taken. I think it depends on us as a person as to how we see these things. I don't readily inform people I have PBC. After all you cannot tell I have anything that isn't working correctly from the outside.

I know I've been asked by nurses and healthcare assistants previously with regards to drinking alcohol. I said PBC to a nurse at my old GP surgery, she said what does that stand for, it was the C word that she automatically asked me about drinking!

I know whilst growing up back in the 1970s (can't remember much of the 1960s, too young through that decade), the word 'disease' used to conjure up other things like the Plague, etc., things that could be caught whereas as we know PBC isn't like this.

I see it as something that I'll never be rid of (unless modern science can find an answer - I think it would be to attempt to eradicate the antibodies that we produce), so with that it is long-term and a condition that has to be kept a check on. Yes diabetes is definitely long-term, my son-in-law developed aged 14 and now his own little girl who is only 4 was diagnosed with the very same insulin-dependent type aged 3.

[Brummi in reply to Hidden]

Hi again, as you know I'm 65 and in the mid 60s I joined the Royal Navy where a lot of training was given on diseases. It was to prepare us for trips abroad yellow fever, cholara and so on. As for my Diabetes I inject insulin 4 times a day but I'm learning to control it. Take care

[jenny66]

Hi mabbott, i was diagnosed with pbc in 2011 aged 45. I thankfully dont have any other autoimmune disorders.

[teach_2_learn]

I'm 39. Last May I went in to see the doctor for some help getting pregnant. Needless to say lab work was done and out of left field I have liver disease. It was thought to be Fatty Liver from my primary care physician but after pushing to see a specialist I was diagnosed with PBC in January of 2014 from a liver biopsy. It is currently being maintained with Ursodial and my body is responding well to the meds. I will continue to hope things go well and I wish you the best.

[Pooche]

Hiya. I too was diagnosed with pbc just a little over 2 years ago. I do have other autoimmune problems but thankfully no other ones that effect my liver. I eat gluten free and dairy free, and since my pbc diagnosis I only eat white meat and fish . I do as much exercise as I can. I had to take ill health retirement so I am fortunate that I can pace myself, and if needed have a rest in the day. Try not to get too stressed about this problem. We all know it won't go away but it tailors itself to the individual so no two of us will have the same disease progression. Good luck and live life to the full!

[SLWB]

I was diagnosed with only PBC, however once you have one autoimmune disease, there is a greater chance you will have another sooner or later.

[Annac]

Hi, I was diagnosed 7/8years ago. No other diagnosis. have niggly things happen,don't know if that is an age thing or PBC, particularly get very tired if I have had a day of exertion . But keep busy anyway. I Take Usro .

Live with PBC don't let it take over if you can. My consultant once told he has patients age 80+

[valco]

I am 71 years old and have had pbc for over 11 years with no other major auto immune diseases. I live a full life and have little time to dwell on it, although at first the prognosis scared me. I see a consultant once a year and take Urso, a statin, Questran for the itching and Vit D, it all seems to help.

[Hidden in reply to valco]

Good on you valco. I think also with PBC how we feel personally can depend on how old we are when we are informed that we have PBC. I was only 46 and know not the youngest on this site but I still think that being under aged 50 can have a bit more of a bearing on things.

I think although like everyone you wished you didn't have PBC but I think for me I would have probably liked to have developed it your age and plus. It's just how we think of these things even though we are all in it together at varying ages.

I don't dwell on PBC. I am reminded I have it every time I reach for the urso and at night when I itch (I haven't yet given in to try something for that as at present it is tolerable. I am just Morph of an evening, daytime fine. Some nights I get broken sleep due to the itch, others (like last night) I don't). I crack on with life as you never know in future with this PBC and what it may bring and then I wouldn't want to regret having the heads up on knowing and not enjoying life.

[valco in reply to Hidden]

Thanks for the reply. Although I was diagnosed at 60 I do wonder if I had signs of it when I was expecting my second child. I had uncontrollable itching to the extent that I was put on steroids and barbiturates for sleeping. This would never be recommended these days, bur the GP knew very little about it and there is a condition called cholestasis which is similar to pbc but it is monitored carefully now and babies are induced because of the risk attached. Understandably my son was born in a poor condition but is now well thank God, although he too suffered with auto immune diseases. The whole thing has forced me to look at my life style. I drink very little alcohol now whereas I used to drink quite a lot, I try to eat healthily, although not a fanatic and am more aware of the need to take more exercise. I am also a Christian and believe in the power of prayer and firmly believe that God keeps me well.

[Hidden]

Hello mabbott.

Do as I do, don't worry about if you'll develop something else as well as PBC. I just have PBC that I know of and I'm not interested in knowing if I do have anything else. I was 46 at diagnosis Dec 2010, I am now 50, doing well.

Crack on with life, live it now and you never know, it might never happen so meanwhile I cannot see the point in worrying over it. In the event something else comes along realted or unrelated to PBC then that would be the time to deal with it.

[mharib]

I was diagnosed with pbc 7 years ago at the age of 39.as far as I know I only have pbc . The last year has been a major struggle for me . The fatigue is really bad I am in pain all over my joints really hurt I have had a cold for over a year I just feel so yucky everyday if I say anything to the docs I get told I am depressed as for cold I was told its just one of them things.I wish I could have your positive thinking . you all seem to be coping well I feel like a failure and really am starting to wonder what the point is

[GrittyReads in reply to mharib]

Hi mharib,

So sorry you are having a tough time of it. Is it your GP who is being so dismissive of the depressions, joint pain and the cold? Also, do you see your consultant every so often? If you do see your consultant, why not tell him about these illnesses. I think depression is often a side-effect (if not an actual symptom) of PBC and deserves sympathetic consideration and treatment, as even if not PBC related it will be affecting your ability to stay strong and help your body cope with the PBC. Also, the joint aches and pains can be related to vitamin and mineral lack, so you should ask to be checked for calcium and vit D levels, and also ask to have a bone density scan. Same with the cold, it suggests your immune system is under the weather, so again more care and examination would seem to be called for.

If you don't see your consultant regularly - and most people on here with fully diagnosed PBC seem to - then why not ask to be referred back to him for more checks? There are lots of tests that are regularly done on people now, that were not done when PBC was first mentioned to me, and I think we could all be more carefully monitored.

It's only my opinion, but whether it's your GP or your consultant, I don't think your ailments should be being dismissed like this.

[Hidden in reply to mharib]

Sorry to read that you are experiencing a hard time at the moment mharib. Fatigue isn't nice. I was fortunate that after the year of diagnose at some point fatigue for me just vanished (just got itch at night usually).

Could your cold be related to any allergies, just a thought.

As for depression and a doctor speaking so, I think anyone with something that they have to live with day in and day out and that is long-term can have bouts of feeling depressed but it is when it remains with one all the time.

You are not failing yourself, it has just got on top of you which I think could be temporary. Unlike yourself I've only been diagnosed since Dec 2010 but I have had to go through the itch during 2010, 2011, 2012, 2013 and now this year. I sometimes wonder how on earth I get through with hardly any respite from the itch but something comes along that gets me into gear and I pick myself up and crack on.

It might be that you need to deal with what you say is a cold first and then take it from there.

[littlemo in reply to Hidden]

Hi Peridot just reading the way you have written that about the itch and having been there big time feel you really should give the Questran Light a go. I take one sachet before and one sachet after breakfast and this along with a few little tricks I have learnt over the years keeps the itch very mild and tolerable. However as I have mentioned before and not that I would recommend anyone to go off Urso as it is the only drug recommended for Urso the itch has been much less troublesome. Best of luck bfn.

[Hidden in reply to littlemo]

Hello littlemo (love the picture by the way), I at present am not resolved to give any other medications room in my life.

I don't fancy Questran (or colestryamine) to be honest. I have no problem with my bowels and noted that diarrhoea or constipation can be a side-effect. Since starting urso Dec 2010 I have gone through the odd bout of constipation, something I never had prior to starting urso.

Having looked at the PIL for both Questran Light and Questran for me it is a current no-no. Noticed that there are 2 colours of yellow in them (different in each) and also aspartame in the Light. I haven't for many many years agreed with artificial sweeteners.

Out of interest why do some of you take Light as opposed to the original? All I can see is that perhaps there is a calorie difference?

I think if this Questran was a more guaranteed cert that it could eradicate the itch then I'd go for it but it seems that it is hit and miss as if it would work. That might be me being stubborn at the moment but that's how I currently feel.

[ZiggyBean]

Autoimmune diseases can go hand in hand. Like anything else, if you are diagnosed with another you figure it out and move forward. I have systemic lupus, autoimmune hepatitis and PBC. I feel the PBC is the scariest of the three. I am 39 & have hard symptoms for years that were attributed to my lupus. The symptoms got very serious when I was pregnant back to back for four years trying to have children

[CheshireEm]

Hi, I was diagnosed with PBC in Oct last year. It took me a little while to mentally adjust to having a name for my problem. Part of me felt like I suddenly had a new illness but overtime I realised that practically I had been dealing with the fatigue for a few years already. All the diagnosis meant was that I had a way of understanding and explaining my symptoms, medication and monitoring in place to support me...which has to be a good thing.

I'm currently being tested for another autoimmune condition, ulcerative colitis. Whilst it's far from pleasant having all the tests, for me I don't feel I can go into battle until I know what I'm dealing with. We're all different but I find getting maximum information / education on my health gives me a level of control which stops me feeling down about the condition.

I'm also lucky in a great consultant who's advice was simple. As I have no real damage to the liver yet he told me to "live like you know you should already" which was drink alcohol within guidelines, eat a healthy balanced diet and exercise regularly. Between that and the Urso my blood levels have come down by around a third already and he believes will continue to reach near normal. Obviously all advice is personal to your individual condition but this is working for me

Take care everyone x

[alpha3 in reply to CheshireEm]

Hi Cheshire Em, I was interested to read that you are being tested for ulcerative colitis. I didn't realise that this was an autoimmune condition. My Dad and Brother both had this condition, so I am wondering now if autoimmune conditions run in the family. I was diagnosed with PBC in August 2013 and usually keep well. I am 74 years old but I think I have had this longer looking back on several symptoms over a few years. When I was diagnosed I was told that I had some cirrhosis and usually see my consultant every 6 months. I have never been a drinker only the occasional glass of wine and I was horrified when told I had cirrhosis, but now just try and get on with life and put it out of my mind, after all there are a lot of people worse off than me. My next blood tests are in August, and hopefully I will see some improvement. Take care

[Mickey1964]

Mabbott,

I was diagnosed 10 months ago with stage 2 PBC. As I see it I have no other conditions, issues or diganosis, but eat gluten free as I started that before being diagnosed I went off after diganosis but just not feel as well I have been tested and I am not intolerant or Celiac, but my oldest child is so there is something going on there! I have a very strict regiment of supplement because all diseases are difency so I will not allow myself to side down that slope I am all about prevention and hope that with my next check up in July all my numbers will be in normal range and I have halted PBC and it's progression.

[barkway]

hi mabbot, I was diagnosed with pbc over 20 years ago , only one so far, I have no s ymtons as yet, I have a few drinks at times , I find it best to forget abt pbc and carry on with life. don't worry.

[GrittyReads in reply to barkway]

Hi barkway, Sorry for being nosy, but why were you diagnosed - as in, do you have AMAs and abnormal lfts, or just one of these? I'm curious as I think you are the first person I've come across who has had it for so long, and is still symptom-free. I first tested +ve for AMAs over 22 years ago, but still have normal lfts and no symptoms. It wasn't given any kind of a label or diagnosis for years (no one ever mentioned PBC, just said I had antibodies that could develop into something, so just to have the annual liver function tests ... Then, over 6 years ago, a new a new GP sent me to a new Consultant who diagnosed (labelled me?) with 'pre-symptomatic PBC', and all the fun with Insurance companies started. Take care.

[barkway in reply to GrittyReads]

hi gritty reads

I had tummy ace and had blood tests that showed abnormal liver, I don't know abt amas and lfts, I wasn't given a diagnosis for a few years , I was asked abt drinks they thought I was drinking a lot , I wasn't, at last I had a biopsy and got a diagnosis, I was told I might have another 15 years to live, I am still here, I take 900 mg urso daily and feel fine apart when I want travel insurance , last year I paid £1000 for yearly worldwide, hope to get something cheaper now. all the best.

[GrittyReads in reply to barkway]

Hi, Thanks for answering, and it's great to hear you are doing so well - long may you prosper! I'm aware I may develop something, but so far I'm fine and nothing's changed for over 22 years. I get so angry at this cavalier diagnosing on AMAs alone, especially for younger folk, who like me may not get anything, for years or ever - it's especially hard if they need house insurance, or life insurance. By the time the recent consultant gave me my 'label' I was okay for most things - and I think travel insurance has eased up in the last six years, but I still regard it as my annual battle. Who did you get the Worldwide from? I think if I'd been labelled 22 years ago I would not have seen the world or climbed in so many mountain ranges. Thanks again and take care.

[nomorepies]

Hi Mabbott, I was diagnosed with just PBC 20 months ago, I have since gone on to develop Sjorgrens Syndrome.

[normadawnreid in reply to nomorepies]

Hello,

I was diagnosed with Sjogrens Syndrome last year and PBC in March. Do you take anything for SJorgrens. I am on Plaquinil. I have vague symptoms of arthritis and fatique. Exercise makes me feel myself. Hope all is going well with you.

[sistergoldenhair]

Hi mabbot, I was diagnosed at age 37 in 1995, they thought I had it a year or two prior. I have no other auto immune or any other illnesses. I will say I was diagnosed late stage 2, early stage 3. In 2011 my disease started to progress and there were issues where I had to go to hospital twice for varices banding and blood transfusions. I have progressed to stage 4 but all things considered and with the grace of God, I am doing well. I can't and do not function as well as I used to, which after working two jobs for 15yrs was an adjustment. I still tend to push myself, sometimes to much and I pay for it, but I really don't dwell on it, I just take it as it comes. Brummi, great attitude and if and when I get closer to transplant I would love to talk to you. Peridot, I really like and agree with alot of you posts, however, I do believe PBC is a disease, not a condition and that is what my doctors have all told me. It is a disease of the liver. I heard that almost 20years ago when I was diagnosed and still hear it, and there has been so much research and information gathered over that time!! thoughts and prayers to all, cyndy

[lkraft]

I was just diagnosed with PBC in March of this year

[mumofthree]

Hi mabbott

I was diagnosed with PBC ONLY in Jan2011. I was being tested for rheumatoid arthritis - another autoimmune condition which I have not been diagnosed with - when results of other blood tests they were doing showed that I had PBC, eventually confirmed by liver biopsy. I have heard it said that if you have one autoimmune condition you are more susceptible to having another. But I strongly believe that what is the point of worrying about something that may never happen to us. So please try not to worry, enjoy life and take care.

[mabbott in reply to mumofthree]

Hi mumofthree! I tested negative for rheumatoid as well. Are the rheumatoid and pbc tests the same or similar?

[mumofthree in reply to mabbott]

Hi again mabbott, Sorry but I am not really sure if the tests for PBC and rheumatoid are the same/similar or not, it was not really explained to me at the time, all I know is that there were lots of different tests being carried out on the blood tests at that time. I can only guess from reading other posts on here that one of them must have been the AMA test. Sorry I could not help more.

[GrittyReads in reply to mumofthree]

The tests are looking for the antibodies that are considered to cause the conditions. My understanding is that the antibodies are different for different autoimmune conditions. PBC is classed an autoimmune condition as they think the AMAs (antimitochondrial antibodies) in the blood attack the cells of the bile ducts in the liver, and cause PBC.

I don't know any detail about the rheumatoid antibody, but when I was tested for PBC, they also did all the different, separate tests for the antibodies for other autoimmune conditions, such as Lupus, Hashimotos thyroiditis, and Rheumatoid, as people with one autoimmune conditions can often have others.

So, separate tests for specific, different antibodies - but probably just one lot of blood drawn at the time and decanted into different phials (I guess ... I never look!).

Have a good read of everything it says on the PBC Foundation site (see 'About Us' purple bar at the top).

[mumofthree in reply to GrittyReads]

Hi GrittyReads, Thanks for clearing that up. When I see the doctors I take in what I can understand and the more involved medical jargon goes straight over my head. I always take my sister along with me to see the consultant because she was a senior sister of nursing and understands all that medical stuff. Thanks once again.

[nomorepies]

Hi Normadawnreid, I have desperately dry eyes and no tear production, I have punctal plugs fitted to both eyes and use drops 12 times a day with lacrilube at nights. My mouth is starting to become dry and my teeth are stuck to my lips in the mornings. Do you find that plaquenil works, what are your symptoms.