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PBC. Does anyone have primary biliary cirrhosis

Posted , 29 users are following.

clare1970
clare1970

Hi. I have just been diagnosed with primary biliary cirrhosis due to presence of sp100 in my blood.  Very scared.  Can anyone tell me there experience of it please.  

0 likes, 31 replies

31 Replies

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  • heather_13559
    heather_13559 clare1970

    Posted

     Hi Clare ,e tha

    i am 39 years old I was poorly last year I went  the doctors and had lots of blood tests .they said thAt I had viral infection to the liver which was also it was inflammation people have said to me that I looked pasty in the face and I am always feeling tired . The specialist at the hospital told me that I might have something like pbc they will be keeping an eye on me each year .

  • liv20560
    liv20560 clare1970

    Posted

    I have PBC. I just turned 23 and they said it usually happens to people in their 30's and up. My doctor says my case is particularly difficult to handle since my body's liver enzyme count goes into dangerous levels over 1,000 and comes back down to normal levels and they can't explain why. Last year my enzymes were over 1,000 where I was sent to the ER 4 times in 1 week because I couldn't stop vomitting and the pain was unbareable. The ER would just send me home after nausea medicine and pain killers were injected since my tests were showing negatives on all the tests they ran.

    After my follow up from my ER visits is when they said were afraid that I wasn't going to make it because how sick I got. I finally tested positive for the screening test after a really rough year that had me go temporarily blind (I also have Chronic open-angle glaucoma which is what I thought caused my blindess at the time, but wasn't), a doctor acuse me of being psychosomatic because he couldn't explain what was going on, countless ER visits with top drs in the country working on me (even a lumbar puncture was performed on me which had negative results) and an unexpected miscarriage my boyfriend and I were unaware of...no answers were being found until finally a small town doctor just miles away took 7 tubes of blood and came back saying my screening test came back positive. 

    The doctor had me retested in my town to confirm my results, but they aren't giving me the results of the test. The nurses turned me away from a walk-in because I didn't have an appointment set-up and the next appointment wouldn't be available for months when they know this condition is life-threatening without treatment and it's important for me to get these results to get treatment. So, I still don't have those results and it's been 4 months since my last visit. I had to become vegetarian because of this disease and my body rejects a lot of food.

    • stacey2222
      stacey2222 liv20560

      Posted

      hello i am 24 and was diagnosed with pbc in july, i hav been told i will need a transplant and im not responding to the urso, my lfts were raised over a 1000 aswell but managed get them down to 700, i get all the symptoms but just hav to get on with it, its hard but hav no choice, it is really rare for people our age to get this illness, i hav got to go on clinical trials as im not responding, hope u feel better soon
    • liv20560
      liv20560 stacey2222

      Posted

      I'm sorry you have this too, Stacey. I guess we're the "lucky few" who get to have it at our age. I hope you feel better soon too
    • varsenik
      varsenik stacey2222

      Posted

      Hi Stacey, so sorry to hear this. I was diagnosed in 2007 at the age of 46 stage 1 with no symptoms. I had a blood test due to feeling dizzy. I had raised liver enzymes from 2003, but my GP said there was nothing to worry about and I did not get followed up. I was put on Ursogal 900mgs followed up yearly with a blood test. My liver enzymes have been stable slightly above normal. I have been going to the gym, got on with my life with no symptoms. Unfortunately, I developed some intense itching earlier this year and I was taken off the Urso and all my itching disappeared after 1 week, but my liver enzymes went up quite a bit. So was put back on the Urso and the itching returned with a vengence. I have started Questran which has helped. I tried a different brand but still itching. I have been told by the hepatologist that people can become sensitive after many years. I also spoke with the drug company and they said they have heard of this but not common. My fibroscan done 2 months ago was 5.9. Just wondering if anyone else has had this problem. I do hope that you feel better.
  • M1954
    M1954 clare1970

    Posted

    My sister who is 72 was just diagnosed with that last Friday.  She has been put on a medicine to stop the progression of the disease. 
  • julie58419
    julie58419 clare1970

    Posted

    Hello

    Hope your well I was diagnosed 2 years ago and put on medication   Itch is a problem still but not too bad but tiredness is my big problem  so had to reduce my work days to 4 a week still awaiting a review from the hospital been 12 months since ive seen anyone but guess if they were worried i would hear  Take care and if i can be of any help to anyone please let me know   stay well

  • aine14884
    aine14884 clare1970

    Posted

    I have just been diagnosed with pbc and feel scared having a fibroscan in two weeks
    • julie58419
      julie58419 aine14884

      Posted

      Hello

      Sorry you have been diagnosed but please dont panic Its hard to come to terms with and you will have good and bad days My only advise i can give is listen to your body if your tired try to rest if possible.  I have just had a review and am awaiting blood results had a liver scan and ive not been called back so must all be ok Do all the scans and things and if you get on medication i find taking it at regular intervals better than all at night  and E45 helps with the itching keep in touch and i wish you well take care

  • trey41016
    trey41016 clare1970

    Posted

    Hi my name is trey i havent bn diagnosed yet but my ama levels where slightly elivated. Normal is under 20 and mine was 23.1. What r ur symptoms mine are fatigue yellow stool i lost alot of weight but gaind it all back i have an unwell fealing every morning. Sometimes my right side and back ache. And sometime i have heart palpitations

  • Suziemo
    Suziemo clare1970

    Posted

    Hi everyone

    i have pbc , i have been taking medication for 4 years. Has anyone on here had covid 19 ?

    Would love to know if it was worse for you as you had pbc ,on the gov web site it doesnt class pbc as a self isolation .

    look forward to hearing from fellow pbc sufferers

    suzie

  • michelle17676
    michelle17676 clare1970

    Posted

    Hi, I was also diagnosed with PBC. Around 4 month ago.

    So I'm still getting used to the disease and what it means, and the effects it may have on my day to day living.

    I have a few symptoms however still not sure if it the PBC or not.

    These include

    Not being able sleep on my stomach (this makes me feel sick)

    Pain in the middle and to the right of my abdomen. ( this is not all the time. Few times a week)

    Waking up feeling nausea ( actually being sick 2 to 3 times a week)

    Waves of sickness and feeling hot throughout the day.

    Itchiness in the night. ( happened twice where I've woke up with it)

    Every so often I seem to hit a brick wall and need to sleep. Everything becomes an effort. ( usually fine after around 10-12 hrs sleep)

    My waste products some times have a really bad smell.

    To help myself with the above issues I have tried to adapt my eating habits.

    Eating less fat

    Eating more friut and veg

    Refrained from eating before bed

    This has seemed to calm the sickness down.

    Hope this helps.

    Would love to hear from others please.

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