diagnosed at same time as polymyalgia, consultant didn't prescribe anything, am concerned. can you help?

Hi, I was diagnosed last September and it was found when they were investigating what turned out to be polymyalgia Rheumatica. I went to Liver specialist ( privately for speed) but to be honest was in state of shock and didn't really ask questions as I was trying to deal with the polymyalgia symptoms which at the time were horrendous. am now on steroids and doing well on the poly front but am concerned re PBC. At the time I was described as asymptomatic and so specialist said just to have another test this sept 2015. and did NOT prescribe anything. I do sleep a lot and have given up one of my part time jobs I am concerned that there is an over lap of symptoms and the need for sleep may be to do with PBC.

I am due back to Rheumatologist 16th April am not sure if I should ask him about it as he did have a letter from my liver specialist at the time . My GP has no suggestions and said to wait till september to have another test( I did ask if I could have one done sooner)

I would be grateful if any suggestions and if I am just behaving like I don't want to make a fuss?

Am concerned as everyone seems to be prescribed urso (?) but I haven't.

4 Replies

  • Are you in the UK? I'm guessing so, given what you say about seeing someone privately.

    I would advise you to have a talk with the PBC Foundation advisosrs (link at the top of the page, here). However, it might help - both in us advising you, and in the PBC F commenting - if you can provide, or find out a bit more information.

    [NB If you have not already joined the PBC, I would do so, and get their fact folder, which you can read and show to your GP (I wouldn't bother with much online stuff, as a lot of it is old, out-of-date, or just plain wrong!!]

    First: I just want to mention that a friend was diagnosed with polymyalgia rheumatica a few years ago, and she was knocked flat by it, and very fatigued for quite a while. However, she steadily improved (with a bit of see-sawing, while they adjusted her dosage), and is pretty good now - so the fatigue could be that alone.]

    It is my experience and understanding that all consultants, private or NHS, should send you, and your GP, a copy of all their letters, deliberations and tests etc. Plus, you are entitled to have a copy of all tests that your GP does, or that the consultants ask your GP to do. It is your 'right' to have a copy of your tests, and your GP should not refuse. I usually ask for a copy of my annual 'liver function tests' at the reception, and go back to collect it a few days later, once the receptionists have chance to check with the GP and then to print it. If it is a recent test they may not charge (mine don't) or some just ask for a small amount to cover printing. If you are asking for older tests it may take longer and cost more, as it takes more time to search and find.

    You could also do with knowing exactly what tests they did in order to diagnose PBC.

    Formally, you need at least 2 of the following, for a full diagnosis of PBC:

    1) To test positive for antimitochondrial antibodies (AMAs,,, or AMA+ve), and/or:

    2) To have abnormal liver function tests (lfts) over a period of 6 months, and/or:

    3) Have a biopsy that indicates damage to the bile ducts typical of PBC.

    As it seems you didn't have a biopsy, I'm guessing you have been diagnosed on having 1) and/or 2). However, as the lfts have not yet been repeated, it may be that they diagnosed solely on the presence AMAs (which seems to be done by some liver consultants, but not by others - some people just 'have' AMAs). The presence of AMAs is strongly indicative of PBC, but it is not always enough for a firm diagnosis.

    Did anyone say that your liver function tests were abnormal?? Also, did you have an ultrasound, fibrocsan or anything else? It's all useful information to know for yourself, as well as to help us and the PBC Foundation advise you.

    I hope you get this sorted. I would have a look at some of the different discussion strands on here, as you may find people in similar situation. The problem with PBC is that it can be very different for all of us, and as symptoms, testing experiences, etc etc all vary so much, it often doesn't help for us to assume we are all the same, or tell too much of our own PBC history, as it may bear no relation to that of others.

    Also, try not to worry. I know that's easier said than done, but avoiding stress, living well, having fun, a good diet and exercise - and even more stress-busting are all the best way to beat these conditions. Take care.

  • Bless you for that, I will follow up for more detail and have joined the PBC Foundation so will call them. As I am deaf I am not great on the phone hence emails are wonderful, no possible Mishearing !

    I am taking steps to reduce stress hence giving up a part time job in Palliative care (think I need more about living than Dying!!)

    And will take the needing of sleep as part of the recovery process, but check out details at Drs and consultants appointments when I see them in due course.

  • I would ask the rheumatologist in April, the one I saw was very clued up on autoimmune conditions.

    I have both PBC and fibromyagia I thought my pain and fatigue were due to the PBC my Gastro did not for some reason, so she sent me to see rheumatology who diagnosed fibro but he knew a lot about PBC and sjogrens.

  • Thank you for that, I have appointment with Rheumatologist soon so will ask then, suspect he will be able to help. just feel grateful its needing to sleep rather not sleeping at all!

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