My specialist thinks I have PBC at age 19

My liver specialist thinks I might have PBC at age 19 just after having a baby boy. It started out with severe itching with what everyone thought was obstetric cholestasis which is a pregnancy condition that effects your liver which causes severe itching. Just 6 days after having my baby I was rushed in with an inflamed liver that you could visibly see by my rib cage. I had lost so much weight and was in a lot of pain with a fever and high blood pressure. After having liver biopsys and countless hospital appointments having CT scans and MRI scans the doctors are still unsure of what is actually wrong with me. 7 weeks later I'm still waiting for test results to come back for an actual diagnosis. The itching has consumed me mentally and physically, every day seems to be a huge struggle with itching and extreme tiredness. I'm just wondering has anyone else ever experienced anything like this at such a young age? I'm scared for my health and I just want to be well enough to for my son. Medication isn't helping me and I've been on URSO for the past 10 months now. Any advice would be much appreciated🙂

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  • I'm 31 so much older than you but still relatively young and also had a little boy and been diagnosed after. Just to say hang in there x

  • Thank you! Il try it's nice to know I'm not actually alone!x

  • You def aren't alone and if it is PBC it gets easier with time xxx

  • Hi @Tagatha

    Sorry to read that at such a young age you have been diagnosed with PBC. I know the itch can be all consuming and I am currently taking colestyramine and another drug which may not be suitable for you with a young baby. I am now 65 was diagnosed about 10 years ago but certainly had PBC before. Taking URSO early is a big benefit as it certainly has been shown to slow the progression of PBC in most cases.

    Once your body settles down after the baby and if the itch persists ask your doctor about colestyramine, also called Questran or Questran Light.

    There is a good article in the Bear Facts magazine from spring 2015 written by Professor Neuburger on the subject of itching. If you are not already a member join the PBC Foundation through the link above and in the members section there is access to all the previous Bear Facts magazines. The PBC Foundation is free to join.

    Stress is known to be an enemy to those of us with PBC and I suspect that with a new baby there are times when you will feel greatly under pressure. Try to schedule your time to enjoy the baby and have time for yourself. I hope you have some good support around you. Many people are unable to understand as most of us with PBC look so well.

    I recently saw a specialist who recommended a menthol cream for topical application, check with your doctor to make sure creams cannot harm the baby if you are breast feeding. The topical cream that I bought has 2% menthol, the cream that the GP prescribed is only 0.05% and is useless. On application there is a cooling yet burning sensation for me which gives temporary relief from the itch.

    Hopefully someone with more experience of early diagnosis and babies will be able to give you some other advice.

  • Hello Tagatha.

    Fingers crossed you haven't got PBC. I believe it can take some months for LFTs (liver functin test) to go back to normal if you have experienced the cholestasis of pregnancy.

    My own daughter encountered this when she had her only child (almost 7yrs old) but not long after the birth the itching stopped (it was the itching that concerned her - at the time (later 2009) I did not have PBC that I was aware of, I started itching intensely early 2010, diagnosed December 2010). She had blood checks and has been fine since. By coincidence a friend of hers had this cholestasis too just over a year ago when she had her 2nd child (she didn't with her first a decade before) but hers took that bit longer to vanish following the baby's birth.

  • sorry to hear you could be facing this at 19 and with a baby boy :( there is a medication you can take for the itching (your specialist can give you the name I forget) - mine said it helps. I have my bile salts tested every few weeks to monitor if they're increasing (they're what causes the itching).

    HUGS - I hope you get your results soon - whether it's that you don't have PBC or that you do - because either way you will at least know and can move forward :)

  • Hi Tagatha. My pregnancies were very similar. Not the weight loss but the itching that drove me insane. I believe i too had it from an early age. I am not young now but i remember the terrible itch and being prescribed something for it

    I hope you have some answers soon and that everything settles down for you. Life is hard enough with a baby with out being sick and itchy.

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