What do PBC flare ups feel like for those who are symptomatic?

Hi again,

Sorry for so many questions but I have been flying solo for 5yrs and I am my doctor's only patient. I have read here that some PBC patients have flare ups. Could you describe symptoms that let you know that you are having a flare up? I pretty much have no symptoms other than wanting to sleep all the time. I get random elevations with my ALP jumping 100 points at a time, which are only captured by routine LFTs. I thought if I knew more about what to look for I could be more proactive some how. Also I probably should ask if there is anything to be done regarding a PBC flare.

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  • Hi Q8Cooper, for me there's a distinction between rises in blood markers which I may not feel, and a worsening of physical symptoms which are usually more related to over-reaching myself. I'm not sure if PBC is characterised by the flare ups typical of diseases such as Rheumatoid Arthritis, although some people do experience them.

    I know I suffer more when I fail to create breaks between very busy days, but because I often can't respond to my body's requests for rest I've worked on building up my resources instead. I make time (early morning) to do some low-level cardio-vascular and strength exercises twice a week at a gym. So far it's working, so the thing I've been told, 'energy begets energy' seems to be true.

    How do you manage you need to sleep all the time, and what do you find helps you? Best wishes.

  • Currently my fatigue remains untreated. The way I manage is mostly sleeping for two hours in the morning, two hours after lunch and two hours late afternoon and I sleep 6-8 hours sleep. So I sleep on average 14 hours a day. I had to stop working 2 years ago, because without the extra sleep I had too much brain fog when I hit the wall. What helps me is if./ when I have a day that I do feel energized I make sure always to take advantage of it by going for a walk in the mountains or something else uplifting to keep my spirits up. If I have to be up i.e. doctors appointments etc. I drink a trashcan size diet coke. That at least gets me to a place where I don't feel so tired that I want to cry as I push through the fatigue. I think eating clean is very helpful. I gave up meat and eat as close to nature as possible. I recently heard that some people with severe PBC fatigue can be helped with taking ADDH short acting medications taken in the early morning or afternoon six hours prior to sleep so not to interfere with it. I am trying to find out more about this as a possibility.

  • Dear Q8Cooper, did I read correctly that you drink a trash can of Diet Coke - that is the most dreadful stuff you could ever drink. Fake sugar is as bad if not worse than real sugar - better to have a warm shower to wake you up. Please please give it up. We all suffer from fatigue with PBC , your on the right track with an anti inflammatory diet I really feel that is the key to feeling as good as you can be. big hug, kandypat

  • You are absolutely right. I drink one of those large cups they sell at the service station and the artificial sugar is bad, bad, bad. I have lost over a hundred lbs, don't drink alcohol, don't smoke and became vegetarian picking every food I eat for certain researched benefits. Diet coke is my last vice and I am trying to give it up. Thank you for your caring words. I will keep trying. One last addiction to give up. :)

  • Aww, sorry - its easy to be judgmental, you have come a long way already, so keep going I'm sure you will kick diet coke into touch very soon. Kandiepat

  • No worries, Sometimes I need a good reminding :)

    Kat

  • Hi Q8Cooper

    As Skypony suggests flare ups for people with PBC do not seem to follow typical patterns. For myself I notice that my itch is much worse from time to time and it would seem that those times are when much has been asked of me. This last weekend was really busy in a lovely way but I was very tired come Sunday night and although I am medicated for the itch it has returned to a level which brings me very low indeed. I also find certain joints are painful but I put that down to doing more than in my normal schedule.

    If you have not joined the PBC Foundation yet then I can highly recommend it. It is free to join and the members section has some really good information and access to back copies of the Bear Facts Magazine where professionals have written some good articles. I recently followed a webinar and these sessions are also to be found in the member's section.

    Don't worry about asking questions as you will find a great bunch of people on here with a wealth of experience and when we fail then the Foundation can also be contacted for help and advice. I also think that when questions are asked we all learn something more.

    keep in touch

    best wishes

  • Thanks for the tip. I just went to the PBCer's site and joined.

    Kathy

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