I have had PBC diagnosed for 3 years now and am on urso.

I have been pregnant twice in the last few years and both times got ICP - diagnosed easily the first time as that was pre urso so bile acids went quite high but the second time I was only ever borderline for diagnosis as my bile acids never got above 16 - until the day they suddenly spiked to over 80 and killed my daughter at 35 weeks.

Now I am pregnant again, still on urso and really worrying that this will mean I could have ICP or the risk of another bile acid spike but I may not be diagnosed if urso keeps BA low (currently 9). Just looking for any reassurance or advice really as this is such an anxious time for me and despite a lovely and helpful GP and midwife I still haven't spoken to anyone who really seems to know anything much about either condition. I am waiting for a consultant referral but do not have high hopes as they were pretty much useless last time and essentially caused my daughter's death by not checking my bloods when I presented at hospital with a multitude of worrying symptoms.

13 Replies

  • Hi rubyrose, congratulations on your pregnancy!

    So sorry to hear about your previous experience. I haven't got any direct knowledge of this situation, but I'm just thinking that as you weren't confident with your care last time, finding the right hospital might be key. Are you attending one which sees a lot of high-risk pregnancies, and is considered a centre of excellence? Could your antenatal care be informed by your hepatologist, if you have one?

    Maybe the the PBC Foundation can help you find a source of information, or one of the other liver organisations.

    All the very best of luck for a positive outcome.

  • Rubyrose, Sorry to hear about your loss. Congrats on you new pregnancy. I don't know what to advise. With my last pregnancy they took my baby at 33 weeks because they were afraid she might suddenly die. I was hospitalized from 28 to 33 weeks and monitored daily with ultrasounds every other day until she wasn't growing or responding as expected. They didn't mess around and got her out pretty quick.

    Be your own advocate and ask ask ask. Make sure they monitor you closely. Best wishes.

  • Did you have ICP or other issues? I am my own advocate - I sadly find it necessary to be more well informed than the medical professionals I am supposed to trust as the combination of conditions just isn't something they see very often! My husband has said that if we have to pay for me to stay in hospital on constant monitoring then we will - sounds like you were offered that anyway!

  • Hi Ruby Rose do you live in England if so Proffesor Jones who is based in Newcastle is the leading specialist in PBC and I am sure he could help you. I do know he has seen people from America and all over England.

    Hope this helps and good luck

  • Thanks yes I am in UK. I see Gideon Hirschfield at Birmingham for PBC since my stillbirth and he is pretty renowned I think but doesn't commonly deal with pregnancy and PBC - I will check out prof jones! Oh and I have seen prof Catherine Williamson at guys re the ICP as she is an expert in that. Nobody seems to be enough of an expert in both though :-(

  • Professor Jones is the leading specialist on PBC so fingers crossed take care

  • Prof Neuberger is also at Birmingham, maybe he's more familiar with PBC in pregnancy than Prof GH. Although someone on here was with Prof GH through her pregnancy.

  • Thanks for that - think I may just see what prof GH recommends as I'm sure he will know the best people to help

  • I was diagnosed by Professor Neuberg (who was lovely) at the QEHB and I have also seen Dr Gideon Hirschfield - who I didn't like at all!! I personally would see what Prof Neuberg has to say on the subject.

  • Hi,

    From our experiance of 3 pregnancies with PSC + ICP.

    Urso kept bile acids under control uptil around week 20.

    After than Urso was used as well as Questran (Cholestyramine bile acid sequestrant). This kept the bile acids down until around week 30. Bloods were taken daily and EKG (trace) done daily

    All children were delivered by week 32 (2 naturally one C-section)

    Thing to watch out for is bile acid tests are expensive so hospitals often won't do them every day. The level of itch seems to increase with bile acid level, however once the bile acids go very high often the itch can dissappear.

    It is recommended with ICP to deliver by week 35 (as far as I recall)

    Very close monitoring is essential.

    Also Questran is best taken in the morning about an hour after breakfast

    Hope that helps.

  • Thanks so much - this being my third pregnancy with both conditions I'm surprised I haven't come across questran unless it's something for PSC rather than PBC I suppose -

    I will ask about it! The advice currently for ICP is deliver at 37-38 weeks, earlier if bile acids are not controlled - but I think they will deliver me at 34 weeks anyway.

  • I'm so sorry, that is terrible. Could you tell me what IPC is please?

  • Intrahepatic cholestasis of pregnancy. Leads to accumulation of bile acid in the blood which can cross the placenta and cause multiple negative effects - stillbirth being the most catastrophic but thankfully rare.

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