Pregnancy and pbc

Hi all, I am hoping to try for another baby soon. I am on ursofalk for elevated liver enzymes. I am AMA negative but my consultant believes I am very early stage PBC. My issues started during my last pregnancy when I was diagnosed with obstetric cholestasis. After that my liver enzymes did not go back to normal although have normalised significantly but still considered elevated. That's when I was put back on ursofalk.

I am wondering has anyone here been on ursofalk throughout their entire pregnancy/pregnancies and was everything ok with their baby when he/she was born?

Also, did you receive additional monitoring in your maternity hospitals before you delivered your babies? I was monitored when I had obstetric cholestasis twice a week for 7 weeks leading up to delivery and I would like to be monitored again this time just in case.

Thanks for your help!!

Laura

4 Replies

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  • I was diagnosed exactly like you after my first pregnancy although I am also AMA positive. Early stages PBC with only slightly deranged LFTs while on urso. I've been on urso since and throughout my pregnancy with our second daughter. I sought expert advice for that pregnancy and was told that PBC in itself doesn't seem to cause any issues neither does being on urso. The danger/ risk is getting ICP (oc) again as chances are quite high that you will. I got ICP again and with quite early onset at around 20 weeks. Key thing is to get bloods closely monitored - get a baseline and then regular checks as your urso dose can be upped if your bile acids or LFTs start rising too much. Sadly for me I had a massive bile acid spike at 34 weeks and our daughter's heart stopped. I don't want to scare you by telling you this but the reality is that ICP can be fatal. The key thing that could have made a difference for us is that I felt really unwell but they didn't check my bile acids as id had a test within the last week. Monitoring makes no difference according to research but keeping an eye on bloods can as well as being your own spokesperson. Sadly too many medical professionals do not know enough about the condition so you should go to the ICP Support website and inform yourself. We are trying again now for a sibling by the way - most ICP babies DO get here safely and I am hoping we are lucky next time. Good luck to you too - and feel free to message me if you want!

  • Thanks so much for your reply. X

  • I was dx with PBC in May 2013 and gave birth to my baby girl in Oct 2014. I was on Urso the whole time and heavily monitored during my pregnancy. My Maternal Fetal Medicine doc said that urso is so mild that it wouldn't hammer my baby at all. She was right! My Ava was born healthy as can be and I had no troubles during pregnancy either. Currently trying for baby number 2 as well. Best of luck to you!

    -Linda

  • Hi, I was diagnosed with PBC early on during my first pregnancy and have taken Urso ever since, I was monitored closely and delivered at 38 weeks, my second pregnancy was also closely monitored and I was delivered at 37 weeks because my bloods spiked a little.

    During my first pregnancy my bloods went back to normal and they improved during my second but not as much. When I was diagnosed I realised I had had PBC long before I was pregnant just put it down to stress.

    I also breast fed whilst taking Urso, both my monkeys are healthy and full of energy (unlike me!)

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