PBC and symptoms: not sure if this is a question or a rant!

I went back to the docs today for the results of my first post Ursofalk blood tests. I've been on the Ursofalk for 4 weeks.

The difference was amazing - the alp and ggt are way way down - the dip in the graph is something to behold. I was really pleased with that but very frustrated that there is zero change in the symptoms (except if you count the 'getting worse' aspects of some of my symptoms)

So we talked about it. I told him that the tiredness is overwhelming and that I can't get beyond 11am without needing a sleep. If I fight the sleep, I can't string a sentence together. I told him that I can't read and process information and even if I do manage to read something, I can't remember what I have read about an hour later. I told him that I have been getting very itchy - to the point where I have big scratch marks on my legs.

I haven't the energy to do anything at all - including wee bits of cleaning, socialising walking and if I push myself to do it - and even if I really enjoy it at the time - it wipes me out for days after.

I also mentioned that I have 'new' pain - especially in my bones and joints. I said too that my liver area feels as if it has been beaten with a baseball bat and is bruised.

I told him that what I worry about most is the memory/ concentration/ reading because they are the things that have such a huge impact on me. Until I got ill, I read compulsively and I studied for pleasure. My memory was pretty good - mostly because I love the learning process. I really enjoyed writing assignments and reports and I enjoyed writing outside the study and work environment too. My ambition was to complete a PhD and maybe go on to do social research.

Now though, I can't do any of that because I can't do the reading, processing, thinking and understanding that is involved in constructing an argument. And even if I could construct the argument, I wouldn't be able to remember the argument to be able to construct it. It is the strangest thing - i was never particularly good with numbers though I could blag it or do what i needed to do. But a verbal or written report, even if it was challenging, would have been the source of great pleasure for me. All that is gone.

So the doctor wrote all the symptoms down looked at them and said ' In a list like that, do you know what it looks like? Depression'

My job involves working with people who would be very vulnerable to depression and because it is something that has cast it's shadow over my family more than once. So i am familiar with the signs and symptoms of depression. And I had to agree with him, that when you look at the list, it does look very like depression.

BUT - and I think that it is a big 'but' - I do not feel depressed. I have been there in the past, for a brief time, and this does not feel like depression. In fact, apart from the obvious (and I think quite rational) health concerns related to PBC and the future, I don't think I have ever been happier. My mood is generally good - I have bad days like everyone else but they don't usually last long. I would admit to frustration because I want to have my brain back. I want to be able to go back to work and function in a way that makes me an asset rather than a liability. I do worry that if I don't get my head sorted out that my work will sack me - either because I have been off for so long or, if I go back now, because I can't do the things that are expected of me. But I think that is a worry rather than depression.

I just don't think that I have depression! I think that I feel tired all the time, sore, itchy and stupid. But in spite of that, i feel ok - if you know what I mean.

I should say here that I really like my GP - he is a good listener and not a bit condescending or patronising. He even owns up when he is wrong. I trust his judgement absolutely. I know that if he doesn't know the answer, he won't fob me off - he will check and get back to me. I know that he is going by what is in front of him which at the moment is a list of the symptoms of depression. So I have said that, because I am willing to try anything - and I mean ANYTHING - I will take the prescription for antidepressants and I will go back to him in 2 weeks.

If there is a question in this it is: is depression a common symptom in PBC? OR is it just an 'easy' way to explain away and medicate other symptoms?

Now that I have got to the end of this - I think it was a rant more than a question!

32 Replies

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  • PS - I am sorry that i have done such a long long rant - i needed to get it out of my system. I really need to get involved in Twitter and learn to do it in 140 characters

  • Do you know about the PBC Foundation's Compendium about PBC?

  • Thanks Cristina. It's like my bible at the moment. I've had a flick through it. Even though i am still not convinced that I have depression, I am going to follow the guidance, take the tablets and see what happens. It will not do me any harm and can only be of benefit :-)

  • Contact the PBC Foundation, they (Robert) are organising some PMA (Positive Mental Attitude) workshops in the UK and *maybe* then can send you per mail something too regarding that. Don't feed the depression, but the good energy.

  • Thanks Cristina - the silly thing is that my attitude is mostly positive - though like everyone else I have bad days. I have been known to irritate people because I always find the positive in anything - I have even seen my diagnosis of PBC as something that could be positive. I have a 'Pollyanna' attitude to things.

    Generally I am quite adaptable. But, if i think that there is something that I can change or something that can be done to change things, i will fight to the ends of the earth to do it.

    At this time, I think that the functioning of my brain is something that should be recognised as a legitimate symptom of PBC. Although I am happy to accept that it could be depression, I really don't believe that it is.

    I will take every bit of advice that is out there but I also think that the doc has to be open to discussion too. If it isn't depression, he needs to be able to help me find out why my brain is working at about 5% and help me to do something about it

    If it turns out that i am stuck with this slow head, then I will find a way of adapting to it.

  • You are not the only person who has had the same depression diagnosis for these symptoms ...me being one of them. I think its about time it was recognised as a real symptom of PBC and not fobbed off as something else. Even though my DR said I was depressed he did not give me any medication he said if I tried to get more sleep and not fight it that would help. Lets hope the antidepresents will help you alleviate the problem, it wouldn't be the first time a drug for one condition is found to help for another. Keep us posted.

    Good luck

  • Thank you mum of three - I know that I have read somewhere that anti depressants can be used to treat cognitive problems but I don't remember if it was used specifically for PBC patients! my brain is so slow at the moment that I can't remember where I read it!!

    The one thing I don't need any help with is sleeping. i could sleep for Ireland - day or night! I am hoping that taking the tablets will maybe help me to get a better pattern.

  • Hi again

    Reading some of your other replies has just jogged my memory. SamT mentioned the antidepressent Amitryptilene...a work colleague of mine was given this to treat her fibromyalgia. Some of her symptoms were very much like those of PBC. She lost so much work that she had gone down to half pay. She could not get out of bed some days because she was so fatigued and in constant pain. It has taken her almost 2 years to get to the stage she is now...She is like a different woman..The amitrypitilene and light exercise (Yoga) has worked a treat for her.....her pain is under control...she runs around her local park every evening and in August ran a 10k charity event.

    I know its not the same problem you are concerned about, it was given to her for the pain but what I am getting at is that the antidepressent you've been given is worth a try.

    All the best

  • thanks again Mumofthree.. I'm back at the docs in a few weeks to review the meds he gave me. If I've had no joy with the ones I am on, I will ask about amitryptilene :-)

  • I listed my symptoms. very similar to you; and guess what I got diagnosed as depressed!! I know Im not depressed - I just wanted my mind back, painrelief and help with the restless legs and my latest symptom of only being able to sleep when its daytime, (weird ...I know) Eventually he prescibed me something for the RLS that would help with the depression; it does control my restless legs and help me sleep at night which is great.

    He then suggested I go for "talking therapy", I did refuse that on the grounds that I wasnt depressed and my time is too precious to waste.

  • Thank you Val 02 - it's interesting that other docs have interpreted the symptoms in the same way. I have no problem with a diagnosis of depression - as long as it is accurate. It's just that I think that my mood is ok. I won't be doing 'talking therapy' if it is suggested because no matter how bad things are, I really only 'talk' to people who i know well.

  • Hello SC49.

    You're probably not going to like what I start with but the year (2010) I was diagnosed with PBC after feeling so fatigued (put that down to additional stress, responsibility and long working days/hrs per wk as a full-time shop manager at the time. A job I had started part-time 2009 but knew in absence of my manager, I had to work full-time, didn't expect her within a few months of me starting to go off on the sick for 5mths), plus I started itching around March, I had to put up with these until Dec 2010 when I got urso and PBC diagnose.

    After I started on urso, I thought symptons would start to improve a lot quicker than they did. I had, like yourself had improved lft's as had my first ones done within 2mths of starting urso. That in itself was encouraging as I wa a bit sceptical plus I'm no 'pill popper' unless absolutely necessary.

    I was fortunate that my relatively new husband had taken it upon himself just prior to my diagnose to discuss my employment and the fact that he was 'pulling in' a notso bad salary and we could manage plus he reminded me that I still receive a small income from my late first husband so wasn't technically not bringing any money in. So after much debate, pros and cons, I quit my job and it was only much much later on I did realise it was a big mistake for me moving jobs as my prev one had not much responsibility attached and I went home each day not thinking about it unlike the manager's job (but some things you would always wonder if you didn't go for them when you had that urge...).

    Prior to diagnose and myself suspecting I may have PBC (but hoped not) I started to look at how I could perhaps aid myself and finishing work at the time was an advantage. I have to say that for me within 6mths of urso I did find I was no longer fatigued. I continued to rise at 6a.m. on my husband's work days and remained active throughout the day even when I felt like flagging later afternoon at times as I found and still do that if I attempt to nod off in the afternoon if I am not doing anything then it can be lethal for me during the night, especially if one where I have the itch (mine is nightly). I tend to suddenly wake up most nights but find I can go back to sleep within a short period of time but some nights if I do have the itch then I seem to toss and turn most the night. This then leads to feeling fatigued and drained the following day.

    I know almost 2yrs on for me in particular, the itching is never going to go away. I think I am fortunate that I can go several days without the itch at night but then suffer for several others with the itch.

    I'd go as far as to say that I think majority of patients with PBC do get down and prob do suffer from bouts of depression, it more than likely comes with the territory but to me, it doesn't mean to say that we are termed depressed in my mind.

    I probably have my own GP who thinks I'm depressed tho' I think he has prob put me down as neurotic as he couldn't 'get it' why I wanted a print-out of the bloods. 17th Sept I had repeat bloods and when I collected the print-out after being informed I had to make a telephone appt only with the GP to discuss and not to insist on an 'urgent appt', I did (wk to wait) and I noticed there appeared to be some (liver and bone) missing. I knew the GP wanted to speak to me about the HB one, it has been a point below the normal range or about 6mths now. When he rang, only hr and half later than the allotted time on the tel appt day and I waited for him to mention the missing LFTs but he didn't and when I asked, he just said, "It appears that way"! So I now have to return for the missing ones wk after next and same time have another full blood count plus iron, b12 and folate.

    What you prob are not going to like SC49 is in my experience with urso, it is going to take you much longer to actually start to feel that bit more normal. I haven't got a paid job at present but I went back to working voluntary within a mth of finishing the manager's job so it was familiar to me and I am still there, meanwhile I am actively looking for another job but in a part-time only capacity. Good Luck, keep plodding on and keep us all posted.

  • thank you Peridot - you have been in the wars, haven't you.

    I know that I am very lucky with my doctor - yours sounds as if he wasn't in class the day they did Bedside Manner.

    I don't really mind that things don't move as quickly as I would like - I can handle that as long as I can be sure that things might get better eventually.

    I am happy to accept the depression diagnosis - even though i know i m not depressed - because, as part of a process of elimination, it will rule something out! The only thing that bothers me is that if the antidepressant knocks me out, as the doc suggested it might, i will be asleep 24 hours a day!!

    I am still off work and rapidly coming to the realisation that I might not be back any time soon. I have too much responsibility for other people in work - my memory and concentration is much too poor. At the moment, I can't even do a Sudoku - never mind monitor the running of a service. I am worried that if I go back before I am properly fit, I will end up getting sacked for poor performance. It is like catch 22 - either way I will end up unemployed!

    Being healthy is more important to me than working but I would be really annoyed if my employer got rid of me because of something that would eventually be manageable.

  • Hi SC49,

    I was exactly the same as you last year. Had started an Open University course to try to focus upon something other than pbc. The "fog" in my brain was horrendous, but I still HAD to get a distinction, it was after all only a level 1 course, part time. I remember the miserable winter days, feeling so cold in the house - we have to penny pinch due to me leaving work because of PBC - wondering how I could get my brain to work, still looking after 3 young boys, an ever demanding husband and 19 year old daughter who had flown the nest but needed me more than ever. The doctor said I was depressed and I shouted at him (not my usual character). These thing then happened which have made me into a totally different person.

    I got my result from the OU and I had indeed achieved a distinction. It brought me no joy, just left me feeling empty.

    1)He put me on amitryptilene and since then I have had wonderful nights sleep all the time. getting the correct dosage was difficult at first but now it works marvelously.

    2) My specialist put me on URSO which after nine months assisted with the fatigue.

    3) I read a blog on this site about a nurse who took the plunge and went back to work, ended up loving it again. So I started voluntary work as a school governor and am fascinated with the education system. It has given me a new lease of life - everyone knows about my illness and don't mind in the least if I don't feel up to it.

    4) I also read advice from a liver specialist saying that if you don't have to do it, just don't do it. (bye, bye social sciences degree - hello new hobby of buying and selling designer handbags on Ebay). Thoroughly enjoyable and a reason to get out of and stay out of bed during the day.

    Sorry to ramble on but I think it is important to listen to your body. Your doctor may be correct or incorrect about depression but because you don't know how to continue doing the things you love it may be worth taking some time to find something else in tandem with taking the meds.

    Remember you are worth it! You did not ask for this disease but you can find ways of coping with it.

    I really hope this helps a little.

    Sam x

  • thank you Sam.

    The weird thing is that my mood is so good!! I would admit to frustration and a bit of anger because I feel that the rug has been pulled from under me in relation to work, study and staying awake. But frustration and anger can push me into doing stuff so I will make those feelings into something positive. Unfortunately for me, two of my biggest joys are work and study. I am one module away from completing my MSc in Social Research Methods at OU. As you probably know, all the OU pg social science courses have been withdrawn so if I don't do it now, I won't be able to complete. I am very frustrated with that. As for work... I am simply not 'tuned in' enough to carry any responsibility at the moment.

    I was not blessed with the gift of patience. I am used to doing a million things at once and getting things done when I want. Adapting to things (mostly me!) going at a snails pace will be the biggest challenge

    Alas i know only too well that depression manifests itself in many different ways so I am happy to take the docs advice and I so I started on the meds last night.

    I like that advice ''if you don't have to do it, just don't do it''.

    Good luck with your handbags :-)

  • Hi,

    To put it briefly I am having exctly the same problems but I also have fibro and already take amitriptyline *mg a night.

    What I have is not depression. I have had depression before and dont have it now.

    What I do have is a very bad short term memory, no concentration and my ablity to multi task has dissapeared completely.

    A number of people on here have it so I thought it could be PBC related but my liver specalist said no. I suggested to my GP it could be fibro related but he said no to that.

    So they sent me to see a neuro who did a brain scan which showed nothing up. I am waiting now to go for memory studdies.

    I just want my old brain back and not feel like I am losing my marbles along with the ability to string a sentance that makes sense together. Hopefully they will find the reason this is happening and be able to do somthing about it .

  • thank you Zipitydoo - that's exactly what I want back!

  • Hi Sc49!

    I was told that I may have depression and undertook a questionnaire which did prove that I was verging on depression and my lovely Dr said we would keep an eye on it. He said that it would be totally understandable with all I had been through with Breast Cancer and treatments in 2003 and then being diagnosed with PBC two years later.

    Hope you feel better for talking about your situation and that it helps.

    Regards

  • Thank you BethanD - it makes all the difference when you have a good caring doctor. i hope that you are feeling better now

  • Hi, I have the same problem with focusing and concentrating, as do most of the people I know who have PBC. I have never had depression but know people who have. I don't have it, I am too positive. Memory problem is a common sympton amongst PBC sufferers, just not yet recognised by the medical profession. Liver pain is also a common sympton and again not recognised by the medical profession. I have learnt to accept the situation and made changes to adapt to my new situation. Hope you get sorted and best wishes with the depression tablets. Always good to hear what people are trying and if it works or not.

    Regards

  • thanks Coxy888 - you are right... it is good to hear other people's experiences. I think that the rareness of PBC makes it difficult for the medical profession to agree on what are common symptoms. Hopefully someone will find a way of conducting the research

  • Your symptoms sound so similar to mine, it's uncanny. I had to give up halfway through my masters degree in Women's health shortly before being diagnosed, due to memory and concentration problems. I also have all the symptoms of depression, except feeling low in mood! I also love reading, and always have done, but now find it really hard. I have perservered though, and find the problem waxes and wanes, and some days are much better for reading than others, and mornings my brain works much better than in the evenings. It's amazing that such a common symptom of Pbc is still not fully recognised by the medical profession, but I am absolutely convinced that this is not depression, as low mood is the principal feature of depression, and i feel emotionally pretty happy! I would be reluctant to take antidepressants, as it puts extra strain on an already compromised liver.

  • Thanks Beanie - It is strangely reassuring to know that other people out there have similar problems - not that I would wish this on anyone!

    I have found that there is no waxing and waning with my brain activity. It quite simply doesn't work any more - or not at a level that I am used to. I was by no means a MENSA candidate but I was always able to read, learn, think and write with a reasonable expectation of being able to understand what was in front of me.

    Every single day I try to carry on as before but it is not getting any better. I have had one day in the past 9 months where i was able to read and understand something. I have completed 1 sudoku! (I used to do 3 every day on my bus journey home from work)

    It is so frustrating.

    I understand why people probably think that it is not really a serious issue - I can function well enough. But it has taken a lot of the fun out of my life. I have little interest in other hobbies because my hobby is reading and writing. Such a lot of things in my life are connected with an ability to read and write (study/ learning/ blogging/ politics/ current affairs/ history/ general intellectual challenge etc etc) To me music is very closely tied in with reading too - some of the joy of that has gone too.

    I still do not think that I am depressed - i have been taking the tabs as requested because I am willing to try anything. It is probably too early to say whether they are doing me any good - I feel no change at all!

    If i can't have reading back, I might take up moaning and whining as a new hobby - I note that I am getting pretty good at it :-)

  • Girls and Ladies, yes, we are pioneering in learning the symptoms. I'm so happy to read Your posts! My English is not so good, excuse me.

    I think, in everyday practice even doctors often mix depression and anxiety, they have the same or similar medication. So anxiety may be in the background, when antidepressants work with a happy person. My brother was always looking happy, feeling merry, but hidden anxiety almost made a big whole in his stomach.

    1. Yes, I think it's very important, that antidepressants all hurt strongly the liver.

    2. I've read, they perscribed it for fatigue, but for that it didn't work either. It was even proposed for all pbc patients few yrs ago.

    3. Read too, that in liver patients do not digest well proteins, and that cause some brain problems.

    4. Vitamine B helps much the nerves, so it is supposed, it helps brain functions

    5. Ginseng also is told to work like this, as it make bigger the whole in venes :D I had no better words for it.

    6. Read too, that fatigue is due to neuropathy, making the heart nerves work worse, (look at point 4) and if blood circulation is worse, brain does it's work also badly. Now I try to find a cardio dr, who wrote about this, (others tried to find in vain what's the problem with my heart) and if, I'll tell You :D

    Let we try and hope. Now I'm working on a turn in my diet to 80% vegetables, it's not that easy on my climate.

    Please, think with me about this.

  • thank you for your reply, Gizocsi.

    I am going to look for more information about neuropathy. If I find anything useful, I will come back and tell you :-)

  • That would be great. Some days I'm working only on "PBC_NEWS" (we could found such an agency :), though I don't believe, my hepatologists would read it) or better to say, in my "school of pbc", where I try to learn a little, and that's not always satisfying :) Don't worry, together we are stronger!

  • Here is sg what I found today: I think we should print it and show our drs :D I suppose we can find some help on this way, as according to this we can find much more on the net

    Abstract

    Minimal hepatic encephalopathy represents a part of the spectrum of hepatic encephalopathy and is the mildest form. While patients with hepatic encephalopathy have impaired intellectual functioning, personality changes, altered levels of consciousness, and neuromuscular dysfunction, patients with minimal hepatic encephalopathy have no recognisable clinical symptoms of hepatic encephalopathy but have mild cognitive and psychomotor deficits. The prevalence of minimal hepatic encephalopathy has been reported to vary between 30% and 84% in patients with liver cirrhosis and is higher in patients with poor liver function. The diagnosis is usually made by neuropsychological and/or neurophysiological testing in cirrhotic patients who are otherwise normal on neurological examination. Minimal hepatic encephalopathy is a clinically significant disorder that impairs the health-related quality of life, predicts the development of overt encephalopathy and is probably associated with a poor prognosis. Thus screening all patients with cirrhosis for minimal hepatic encephalopathy using psychometric testing is recommended. Pharmacologic therapy is recommended for patients diagnosed with minimal hepatic encephalopathy. The pathogenesis of minimal hepatic encephalopathy is considered similar to that of overt hepatic encephalopathy and ammonia plays a key role. Thus ammonia lowering agents such as lactulose, L-ornithine and L-aspartate that have good safety profiles are recommended. Future studies will better define the role of probiotics, levocarnitine and sodium benzoate.

  • Hi Gizocsi,

    could you give me the link where I could find this article. It seems to suggest that minimal hepatic encephalopathy is found in people with cirrhosis. Most people with Primary Biliary Cirrhosis do not have cirrhosis. It is something that might happen in the later stages of PBC, particularly if the disease is left untreated.

    I would like to read the whole article so if you could give me a link or the reference to the article, I would be very grateful :-)

  • Here it is, please. ncbi.nlm.nih.gov/pubmed/195...

    By the way, I think, as reading all these posts, + literature, that all the medicine doesn't know much, especially exactly, and that there is so many symptoms in different stages, and we all have luckily only some of them, that everything is possible. Please, don't worry too much. :D

  • And compare all this to ncbi.nlm.nih.gov/pubmedheal...

    :)

  • my Specialist just prescribed me anti depresants for all the same reasons you have. Im ashamed to say i broke down crying in her office telling her i cant take the itching and tiredness anymore as its driving me batty!! YOU GET ME dont you?(she obviously didnt) so i walked out of her office and tossed it in the first bin i saw. I am not depressed I am just tired of being tired and sick of falling asleep the

    minute i sit at the end of the day.i hate that i dont sleep well all night coz im too busy scratching the top layer of my skin OFF.

    So no need for anti depressants my dear. ITS JUST YOUR EMOTIONS saying enough NOT your brain.

  • thanks Snoozy... I know exactly what you mean - although sleeping for me is never an issue. I could sleep hanging upside down in a wardrobe! I sleep day and night at the moment. I can scratch in my sleep - or i wake up, have a good aul scratch and then go straight back to sleep.

    I went back to my GP after the tabs ran out and he conceded that it probably wasn't depression. I am lucky that I really like my GP and all the others in the health centre. Even though I didn't agree with his diagnosis, I trust him enough to know that he wasn't just fobbing me off. I would be happy to try pretty much any thing he suggests. Him and his colleagues have fought my corner more than once.

    Having said all that - I think that depression is a pretty rational response to all the stress of the past year. The stress and uncertainty about work and money is beginning to get to me. I think that if things don't begin to take shape soon, I will be back torturing him for anti depressants! :-)

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