PBC

Hi I was diagnosed just over 2 yrs ago with PBC, I've had regular checks with my consultant, I saw him today and was told my blood levels are fine but my scan was saying something different, he now wants a repeat scan & bloods if scan is the same he wants to do a biopsy. I suffer badly with arthritis and have an under active thyroid. I take naproxen which I have reduced, levithroxine, atrovastine, ursodeoxycholic & ramipil. I'm really starting to panic now. I work as a childminder but I feel I may have to give up.

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  • Just get checked out. Let them pinpoint the exact situation going on. The other medication your on comes with some pretty hard side effects. Could those be causing some of problems for you? I realize you need them too. Just check out the side effects and see if your experiencing any of them or if they could be further harming your liver and making you feel unwell.

  • Thanks, just a worry really, I don't seem to have any side effects other than the arthritis.

  • The arthritis is a side effect? From PBC? I'm wondering as I've been having joint pain the last month. Just restarted URSO this last week so, I guess it's the PBC causing it. It's painful and comes and goes. Like one day it's both knees, then the next day it's one knee and both wrists. One day it was everywhere!! I had to take ibuprofen. It's frustrating isn't it?

  • Hi Margaret59

    Not easy but please try not to worry - if you do have to have a biopsy from my experience it was not that bad but you might like to ask for mild sedation rather than letting them take the biopsy without anything to chill you. How long do you have to wait for scan and bloods to be done?

    Perhaps instead of giving up the childminding if you work for someone you could reduce your hours. I think working with children must be uplifting but tiring I know when I have the grandchildren I am tired by the time they go home and they are not little ones any longer!

    Let us know how you are progressing.

    best wishes

  • Hi Margaret,

    I was reading your post today & I am so sorry for your suffering. :-(

    I also have an under active thyroid, my first symptoms that lead to my diagnosis of PBC were fatigue, confusion & swollen, painfull joints. When I was put onto Ursodeoxycholic the swollen, painful joints seem to subside, it was wonderful but now after a year and a half they have returned. But this time my neck, jaw & head are very painful, I have problems opening my mouth to get food in, turning my head is painful & the most worrying for me is my head, I don't have a headache but my whole head is so tender, my pressure points on either side of my temple are so so tender to touch. I have been going out of my mind with worry. I couldn't get my appointment forwarded with my specialist so I went to see my GP. He upped my vit D & gave me a blood test form :-/ Didn't really address the pain in my neck, upper arms, jaw & head. I was wondering what symptoms you experienced before being diagnosed with neck & head cancer?

    Sorry to ask & if you don't want to reply you don't have to. I am just clutching at straws & trying to make sense of these strange pains ( especially on my head.

    Kind regards,

    SALLAM.

  • Hi Sallam, maybe nothing; but my husband has PMR- poly myalgia rheumatica, a fairly unusual/ rare inflammatory arthritis. This head pain, side of the head & jaws can be one of the symptoms--- perhaps you should be referred to a Rheumatologist? I'm not a doctor, & only want to help, but my husband was just recently diagnosed & had some similar symptoms that are 'odd' like yours.

  • Sorry to hear you are really suffering, my pains are in my feet mainly occasionally in my legs and hands. My pbc was found during a blood check I didn't have any symptoms but have suffered with arthritis for at least 10 yrs, and thyroid for about 28 yrs. So far I've not had the fatigue. I hope you get sorted soon.

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