does having pbc affect your immune system in so much as it is weaker?

I have had pbc for 15 years. My first GP understood it and was very good but sadly has now retired. I now have a new GP who I dont think is clued up. I suffer from pain over the liver area, joint and muscular pain, dry mouth and eyes and fatigue. I am now only able to work p/t and even that is getting too much.Recently I appear to have gone from one viral infection to another. I also have started sleeping a lot during the day. The new GP doesnt think the extreme fatigue is due to pbc at all although my last GP thought it was. Also does anyone have a rash on their skin? I also have a new problem of heart block is there any connection to pbc? My old GP would have known.

19 Replies

  • Mazbe it would be useful to take the Compendium from the PBC Foundation to zour new doctor? It says clearly that fatigue is one of the most classical and difficult to manage symtpoms of PBC, and that Compendium has been made by liver specialists who know a bit about PBC, so to speak. Consult the PBC Foundation I would say. Good luck.

  • Thanks Cristina, I will. You would think a GP would try to find out about it from the gastro consultant or from the internet. Good luck to you also. :-)

  • Hello June9961.

    Personally from my point of view I'd not say that one with PBC does have a particularly 'weak' immune system as we are apparently producing our own antibodies (the anti-mitochondria) that are attacking our bile ducts. Hence stated it is auto-immune.

    My theory has been that the mitochondria cells being energy cells that is what causes fatigue in PBC tho' I have yet to have this mentioned from a medic.

    I think if one is feeling run down then anything is possible. After all just because we have PBC doesn't necessarily mean that we aren't going to be invaded by other things (ie a cold that is viral and mainly chest related). But I do think that perhaps if one has PBC and at the time it's not doing so good then it probably stands that we can feel weaker.

    Hope you are feeling much better soon. Myself, well I go for repeat bloods soon and this time last year mine did start on the rise again. So if so again and then a good drop back down again come May I will put it down to being a bit seasonal as in longer days, colder and miserable days and nights, lack of sunshine, etc.

  • hi Peridot, thanks for the reply. For information when I stopped a full time job with call outs at weekends at nights my blood results were not good. I stopped working and my blood results improved so much that I took on a part time job. Unfortunately, now that I am working my results are quite poor. I also seem to be open to catching viral infection after infection and the fatigue has got worse. Therefore I have made the decision to stop work again hoping the results and fatigue will improve. :-)

  • Hello again June9961.

    When I first stated itching and feeling tired every day early 2010 I was at the time working in a full-time managerial position. I put it down to the very long days (leaving home around 8a.m., most nights it would be gone 7p.m betime got home - this persisted for 5mths). I would come home, flop in the chair and go to sleep, no evening meal as felt too tired.

    I had only taken the job on during 2009 and made a bad decision as I worked part-time prior in a non-demanding job with set hours and didn't 'take it home' with me daily like the managerial one.

    My husband took it upon himself when I finally got 10 days holiday after working 5 days a wk with no 2 days off together in the 5mths that I should quit, things were starting to fall apart.

    After much deliberation, pros and cons of finishing, I handed in my notice on my return and by the end of Aug 2010 I was what I considered temporarily out of work. I did get asked by voluntary where I had once worked in a charity shop and returned one day a wk where I still am.

    When I got the blood print out for the first time after diagnose I looked through them and noticed that in the few months prior to being diagnosed Dec 2010 and not being in paid work, my bloods had actually got better all by themselves as I wasn't on urso then.

    The fatigued and tiredness gradually left me and I've not really suffered regardless for quite some time now. The itching is a different matter of course.

    So perhaps there is something in it when one has PBC and does work. I'm still looking for something suitable to me similar to what I did prior to the full-time manager's job so I should be able to tell when that time comes. I am fortunate that my husband has a full-time job, we get by and I do have my own personal income in the form of a widows' pension from my first late husband (of which the only bane is when in work I pay more tax).

  • I am retired, so I don't know how fatiqued I might feel if I had to go a job every day; however I do sleep a lot more at night. I do have a skin rash and went to see a dermatologist about it. The rash is on my legs, a couple of spots on my back and the back of my upper arms. They are round and slightly rough red areas that do not itch, but look horrid. I was given a steroid cream, but it has not done much good. A biopsy came back clean. I agree with everyone above that you should provide educational material to your new Doctor. I would simply ask if he is familiar with the material and if he says no, I would say " I have my copy with me, which I would love for you to have, since I can always get another from the foundation. Oh, you never heard of the foundation? Here let me write the number and website information on the Compendium." Good luck Judi

  • Hi healthangel,

    Thanks for your advice also. Problem is this dr pretends he knows all about pbc when I know he doesnt. If it hadnt been for my consultant everything wrong with me would have been blamed on pbc. I have now developed a heart problem and awaiting tests to see if it is or isnt connected in some way to my pbc. :-)

  • Hi June I have had PBC for almost 13yrs I don't think my immune system is weaker but I feel my liver has to work harder if I do take any infections or viruses so I take a mult-vitamin plus iron every day and in autumn-winter I take high dose vitamin C to boost my immune system therefore try to prevent myself from taking viruses and infections. This has worked for me over the years. I take an odd little cold but nothing more than that usually, thankfully.

    In regards to the rash I did have one over my legs when I was first diagnosed back in 2002. I was seen by a dermatologist who felt the rash was due to folliculitis because of all the scratching I was doing, in time it did go away.

    I would agree with others re making sure your new GP is well informed about PBC by giving him a leaflet specially designed for doctors from the PBC foundation( ring them and ask them to send you a couple and ask him if he could pass them on to some of his colleagues that way rather than coming across as if you are undermining his knowledge of PBC will just look like you are wanting to make sure you let others know about PBC that way also hopefully he will then have a wee read himself and then see very clearly that fatigue is a major symptom of PBC. Also just on the note of fatigue, about 18months ago I felt more fatigued than normal and on having further blood tests my doctor discovered I had an underactive thyroid which made the fatigue even worse but once I got put on thyroxine I started to feel much better. Good luck with all. Bfn.:-)

  • Hi June. I went to the PBC conference last year, and Dr Mells said they dont know for sure whether the immune system in someone with PBC is over or under active yet. So the verdict is out - for myself I feel mine is overactive as I havent caught a cold for years since having PBC.

  • Thanks littlemo, I will try supplements. val02 that is interesting. I have always been immune to viral infections until the past couple of years where I seem to be catching everything there is. Sounds like I would now have an underactive immune system :0)

  • From what i understand as i have more than 1 autoimmune problem, our immune system is overactive, ie attacking stuff in our own bodies that it shouldnt. I have read 'somewhere'! that we shouldnt take stuff that supports our immune system as it is overactive enough. Whether this is true though, i dont know. I do seem to get less viruses than other people (i shouldnt say that as i,ll probably come down with something now!)

  • I have MS, & took interferon Beta 1-A injections for 12 years. This is to suppress my immune system, because it is over-active & attacking my nervous system. Therefore, I never take flu shots, etc. I have not had a cold or any virus the entire time, since being on interferon. So, when diagnosed with PBC recently, I was surprised that I would not be taking an immuno-suppressant drug, like interferon for that. My doctor said it is because there is not enough valid proof, that PBC is actually an auto-immune disease, although research suggest it could be. So, for now, only Urso is prescribed. I know what you're talking about when you say you hate to mention being virus free, in fear you may catch a virus tomorrow. LOL....I almost started not to mention this, in reference to myself. Yikes...I hope I haven't jinxed myself now. :)

  • Hello

    Are in England if so I would advice you t see a Consultant hepatologist or Gastroentererologist, as GP are not especialist in the matter. Aske them to refer you as soon as possible.

    Try natural remedies to boost inmune system milk thistle helps with the liver in Holland and Barrat shops, Selenium also helps with your inmune system, drink plenty of water, change your diet lots of fish and green salads, vegetables. About the rash and joint pain, there is not much to do it appeares this comes with PBC, I hope this helps you

  • Hi Nelly, I live in nirth east Scotland. I do have a consultant gastroenterologist but I dont see him often once or twice a year at most and dont like to bother him. I will give the milk thistle a try. Wendy and Inkedup i used to not get viruses and rarely took the flu jag. As my symptoms appear to have worsened so has my likelyhood of picking up viruses and I now take the flu jag. Could be just a co-incidence.

  • try not to be too hard on your GP, they really do have a huge amount of thigns to know about and they are general practitioners, as such they have a general idea of most condition, and more indepth knowledge on some common conditions. The problem is PBC still isn't that common so the dr may not have come across i before. They just haven't got the time to study every disease that come there way, that's what specialists are for.

    I know Robert from the foundation has worked with GPs and doctors trying to raise the profile of PBC, but there must be so many docs to get through, It might be worth ringing the office and asking them to send your doctor some of the leaflets written specifically for doctors and as Christine said, let him see your Compendium so he can be assured that fatigue is of course linked with PBC. Do you see a specialist?

  • I would also advise contacting the PBC Foundation as I think their help was/is invalueable to me. My Rheumatologist, who was treating me for arthritis, fibromyalgia, Raynauds and scleroderma, diagnosed the PBC. Scleroderma is an auto-immune system disorder and it therefore does compromise my immune system so I get all the infections going. I have fatigue from scleroderma, fibromyalgia and PBC. Some of my conditions over-lap so it is difficult for anyone to pinpoint exactly where a new problem has arisen from. In the last few wks I've developed lumps on my neck and nose-bleeds - something I never had in my life before. My GP has arranged an appointment with my Rheumatologist for 21st Feb I also have to get another endoscopy on 11th Feb, I think he is great and when he feels he doesn't know enough about one of my conditions he refers me to my appropriate Consultant. I copied the info I got from PBC Foundation and gave it to my GP and he was fine with that. As EAJSWW points out its not always possible for GPs to know every illness especially since PBC is still fairly 'new'. Hope some of this helps, all the best :-)

  • I have a rash on my arms, back, chest, tummy and thighs. It is horrible and I won't go swimming anymore as I am self conscious. I dont get many coughs, colds etc and am rarely ill, but have had pneumonia twice in the last 4 years, so when I am ill, I am really ill.

  • Hi Axl888. My problem seems to be I catch nothing for ages but when I do I end up getting infection after infection and feel so awful. My husband and I both had viral ibfections before Christmas. Mine lasted until mid January and I too was really ill, hence my reason for askingthe question in the first place.

  • Hi june9961..... I had to take early retirement as the extreme fatigue I was experiencing made it impossible for me to work. I have a rash on my chest, it never goes and is called 'Spider Nevi'. I hate it as it is quite red and because of where it is(above my boobs) unless covered it is very visible. I was told by Dr Devlin at Kings that because of our poor immune systems, anything we pick up would make us more ill than someone without PBC. Hence the reason for Flu & Pneumonia jabs. I was told to refrain from going abroad where they have Hep A as it would be very serious if I caught it. When I was working in a school I was always getting colds or any tummy bug going around, since retiring(2 yrs ago) I've had neither. As for heart problems, I cant say Ive ever heard of there being a connection to having PBC. Although I have 2 leaky heart valves, this gives me no problems.

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