Hi I've been diagnosed with Pbc since 2013.i work in an infant school.over christmas I had a very bad chest infection which ended up being treated with a high dose steroid for five did the trick that was first week in January.on Friday I had to send a boy home because he had chicken I had that when I was little but realise altho it's rare I can be caught said on my steroid paper to avoid contact with chicken pox.just done the cardinal sin of googling and seen people with a dodgy immune system are also at risk.are pbcers under that cats gory-compromised immune system??any advice please.getting into see my doc is a three week wait-I had to cry and fall to my knees cos I couldn't breath with chest infection!!!

7 Replies

  • Sorry that should say catagory

  • Hi cazz22.

    I understand your concern but don't confuse the immune system ( our ability to fight infection) with having an autoimmune condition where one's body literally turns on itself. In other words, having an autoimmune disease is not the same as having a compromised immune system. Drugs that suppress the immune system including some chemotherapy agents, steroids, big gun suppressants like Rituximab and drugs used post organ transplant are some examples that would leave one vulnerable to infection and it is wise to avoid situations where exposure to infection is possible. In your case, the steroids used for your very bad chest infection would have left you a little more vulnerable but it is that and not having PBC that is the issue. Of course those with PBC who are also on drugs for conditions such as autoimmune hepatitis and rheumatoid arthritis are in a different camp as they are living with a compromised immune system as a result of taking these drugs.

    Interestingly, it has been anecdotally reported that people who were always able to throw off infection/rarely had colds or illness - ie had strong immune systems - developed autoimmune conditions later in life......

    Cazz I hope this helps a little until you see your Dr who may be able to give you a more scientific explanation. I am wary of giving advice which should be the domain of Doctors but as a nurse working in a public hospital I thought I could try and help....perhaps ring the PBC foundation and see if it's possible to speak to a Dr rather than waiting for 3 long weeks ?

    Best wishes,


  • Thank you karaliz.i would probably agree with the fact that I never got colds etc for years but then of course got hoping that the steroids had left my system and everything working as it should before being exposed to chicken pox.thank you again for taking the time to answer😊

  • I cannot be of any help on the medical side of things but I wonder if your surgery uses the same system as the one I am registered with. Although the wait for a GP is the same sort of time, if you have an urgent need you can telephone for an "on the day" appointment or have a conversation over the telephone with the on call GP. Alternatively do you have a local walk in centre?

    Hope this offers a couple of ideas .

    best wishes

  • Hello butterflyEi.

    At the surgery I registered with 2yrs ago if you want an on the day appointment you have to ring first thing in the morning and you are put in a queue. It is then decided whether you need an appt that morning or whether it can be in the afternoon but you don't get to choose the time, it goes off how it is thought you need to see the doctor that day. I've not tried using this system yet, not had cause to yet.

    I rang over a month in advance for my January bloods and asked for a nurse to do the bloods as the Healthcare Assistant couldn't find the GGT on the system and I knew it was one that I have each time. I got a rather stern reply of 'The Healthcare Assistant can take bloods, you know!' which I then said I know but she can't do certain ones without authority as the nurse can. I then got an appt which I didn't want and was then informed that blood tests are done in the morning when I know that's not true. I asked for an early afternoon appt to suit me, hence the ringing in advance. I know from a prevous job in a surgery (I wasn't a medic or admin but worked surgery times), 'the blood man' as he was referred came for all the samples several times a day and the cut-off was around 4p.m. for the day.

    I know when I rang surgery to ask for a telephone appointment last yr to ask about something (the urso prescription, was having difficulty at the chemist), I had to wait until the following day for the ring back.

  • I agree with the above. I understood that with an auto immune disease my body over reacts to disease. So rather than not being able to fight a pathogen it over fights it so the risk of you getting ill from a virus Etc. Is reduced. You can't go round your whole life planning to aviod anyone with something you might catch. You have to live your life. Good hand hygiene and hand sanitizer help protect against colds and flu . Just try to keep a physical distance from anyone you know to be ill. I work in a the hospital ...that's full of sick people ! But working in a school there are loads of germs. May be teaching good infection control practices should be taught. Hope yr soon better with yr chest

  • Hello cazz22.

    Well I'd not look into this too much. Since I was diagnosed with PBC Dec 2010 I've been around a lot of people and also family who have had allsorts of bugs and yes, chicken pox in a child but I have seemingly been fine.

    I've never heard of avoiding chicken pox with taking steroids. My late former husband took steroids on and off in the last few years of his life (he had asthma) and our own two children at the time were in junior school and they developed chicken pox at the same time. We were both fine.

    You can actually get shingles I believe if you have had chicken pox previously.

    I personally don't somehow think that having PBC makes me any more vulnerable to certain bugs, etc due to the fact I see it that so far I've seemingly not really had anything though I've never been prone to colds over the years when family I live with and who don't live with me have succumbed (my son was always full of a cold certain times of year and my own brother I see frequently is prone too).

    I did think that having PBC somehow to me meant that my system was in a way fed up of shrugging other things off it decided to turn on itself and attack my liver area, the bile ducts.

    I have this thought that the more we are protected in this life to certain things the more prone we seem to be to them. I have been requested for the last 3 winters now to uptake the flu vaccination but I have refused each time. I've never actually had flu nor colds and to me it sort of spelled out that if I did have the vaccination then maybe I might be leaving mymself open to other things. This is just my way of thinking.

    Are you in the UK by any chance? If so, if you can make appointments with your GP online then I'd keep on checking in there as you might get an appointment pronto if you need to speak to a GP. I know in the last year when I've wanted 2 appointments I've not been able to get one until the following week. I've checked online a lot and even early morning as you'll find that often there are cancelled appointments that start to appear. Worked for me the 2 times.

    Hope you manage to override this recent worry.

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