Biliary cirrhosis

Hi everyone. Newbie here and just looking for some advice and support. Ive recently had routine bloods and my doc is sending me for more in depth bloods as she thinks I have biliary cirrhosis alongside my symptoms it's looking like its pretty much diagnosed. I'm 28 years old and extremely healthy and fit. What's driving me mad is the itching, it's just becoming unbearable now, because I'm waiting on results doc won't start me on anything I was wondering if anyone had any home remedies for me to try out? Also the fatigue is something I'm really struggling with, I work full time, run an online business and have a young family, any ideas on what I can do to have some more energy. Is there anyone else at similiar age with this disease? Would love to chat and learn more about it. Thank you

11 Replies

oldestnewest
  • Hi Emma

    You'll see we have info re: PBC on our website but my best advice would be to contact out friends at the PBC Foundation - 0131 5566811 - who are real experts and will be able to discuss all your concerns and advise where possible

    Good luck and very best wishes

    Andrew

    British Liver Trust

  • Thank you Andrew. Appreciate it x

  • Hi,

    I only seem to get the itch below the knee, I know one of my consultants mentioned a product but I managed okay without it, I found a warm shower offered some relief, it's never spread any further even though my levels are over 10 times what they should be.

    I take a liquid iron supplement and one for energy, I do feel a little better, eating right really helps and every 2-3 hours, avoid high saturated fat and processed foods, they make me feel like crap. I don't have PBC, but have something which causes a very similar effect.

    I can't fight my fatigue, I just go to bed and sometimes I can be back up quickly and other times it's a couple of hours, keeping busy seems to help, if I sit around all day that actually seems to be worst for me.

    I feel a long way down the road with my condition as I am awaiting listing for transplant, previously I was able to carry out a fairly normal life just managing things better if that makes sense.

    You will get some good advice on here from everyone.

    Stay strong.

  • Thank you dulux. How long ago were you diagnosed? My itching is all over my arms and legs and it's bad, I'm covered in scabs I've scratched that much. I'm hoping the consultant can help with something x

  • I have liver chirhosis and itch terribly, give myself a leg ulcer through scratching not nice at all, Dermol is really good as a cream, it stops the itching more or less instantly.Good luck.

  • About 3 years out of the blue, I'm a bloke so did nothing about it as symptoms were so mild, I have two complex lumpy bits which are restricting bile flow, once I was diagnosed everything was very stable, abnormal but stable, I get Ill very easily due to not being able to fight things off, always end up any illness with a fever, apart from that went to the gym 3 times a week and generally got on with it, slightly yellow from time to time, then resently it's got a bit more 'real' I'm being seen at Kings, I'm due once assessment is done to be put on priority listing as my results aren't good, bilirubin is climbing and liver function is down and transplant is only option.

    I imagine that they would do a hida scan, which tracks bile through the body using a radioactive dye, it doesn't hurt but takes ages, that shows up the restriction.

    I found great comfort in the team at Kings they really make things happen when they need to and there is always someone to get hold of, I have a wonderful clinical nurse who gets stuff done.

    Previous to my diagnoses I had no medical issue and have lived with it since birth, my liver architecture is all wrong and they can't remove lumps as they don't think I'd survive the operation.

    I have become that person that every one knows with the weird hyper rare medical condition, oh lucky me!

    I'm actually an old git compared to you as I'm 37, still behave like a 21 year old though!

  • HI

    Sorry to hear of this health scare and you are so young too. Its pretty unusual to have PBC at 28, for unknown reasons its more common in women when they hit about 50.

    The tiredness and itching are most defiantly tell tale signs of a struggling Liver, but be careful applying things to you skin or taking anything not cleared by a doctor. Anything wiped on the skin ends up being cleaned out by the Liver, so if you put some chemical on your skin it could make the Liver struggle even more.

  • Hi Emma, I am 36 and I have Primary Biliary Cirrhosis. The PBC Foundation has a forum here on Health Unlocked. If you search around, there are lots of posts about itching and remedies to try.

    I don't have the itching, but I had fatigue really bad. I was actually diagnosed with Fatty Liver Disease, PBC, and Vitamin D Deficiency in October 2015. What really helped the fatigue was to change my diet, start Ursodiol (the medication for PBC), and take mega doses of prescription Vitamin D to get my levels up. Vitamin deficiencies are common with PBC. You can read more about my journey if you click on my name - it shows all my posts. I was able to make huge improvements in my fatigue in as little as a few months, so there is hope!

  • I ALSO HAVE PBC AND A LOT OF ITCHING AND MY DOC GAVE ME A DRUG CALLED ATARAX, AND BECAUSE IT'S PARTLY ANTIHISTAMINE IT DOESN'T WORK ON EVERYONE - THE SAME WAY CERTAIN PEOPLE DON'T GET HELP FROM ANTIHISTAMINES WHEN THEY'RE TAKEN FOR ALLERGIES OR BITES, BUT YOUR TALKING ABOUT A 70-80% CHANCE THAT THEY'LL WORK FOR YOU.

    THEY HAVE VIRTUALLY NO COMPLICATIONS OTHER THAN THAT THEY ARE ALSO USED FOR PEOPLE WITH PANIC ATTACKS, BUT AS I DON'T HAVE THESE I DIDN'T NOTICE. YOUR DOCTOR REALLY SHOULDN'T HAVE ANY PROBLEMS PRESCRIBING THESE AS THEY DON'T HAVE BAD REACTIONS WITH ANY OTHER MEDS, SO ASK HIM FOR THAT. IT TOTALLY STOPPED MY ITCHING - I HOPE IT WORKS FOR YOU.HORRID ISN'T IT, ESPECIALLY TRYING TO SLEEP!

    GOOD lUCK

    SPUDS X

  • Thank you all for your comments. I am seeing my gp tomorrow and hopefully get some thing to help the itching ☺️

  • Hi again I wrote earier that dermol is really good, I also got an infection in opposite leg through my scrating was given Balneum-plus, fantastic stuff, good luck later on .I am up late as chirosis effects your sleep patern, if only I did'nt drink so much, ex matalot you see........

You may also like...