Ladies have any of you been pregnant following diagnosis of pbc and if so did your consultant keep you on urso during your pregnancy?

I was pregnant 6yrs ago and was off the urso for first 5mths, the first 3mths I felt great but into the 4th month I became quite unwell. I was put back on urso and things improved. I have spoken to another woman who was on the urso all way through her pregnancy and she said she felt fantastic during the whole pregnancy and sailed through it which makes me wonder again if what happened to me was due to the pregnancy or to being temporarily off the urso or combination of both!.

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  • Hi I would suspect that with PBC being autoimmune the supression of your immune system during pregnancy helped to make you feel better. Unfortunately being constantly pregnant to control PBC is not a viable option lol.

  • Hi Val don't worry after the experience I had getting pregnant again is not something I would dream of just feel its another area of pbc that requires more research but I know for that there needs to be more funding so we all can do our bit on this front when we are fit and well enough to do so, ta again and bfnVal02

  • I had AIH-PBC Overlap (which is PBC and Autoimmune Hepatitis) when I was pregnant back in 2010-11 - unfortunately, I didn't know it. My condition actually worsened during pregnancy and I got this horrible itching during my second trimester. Since the doctors did not know about my condition, they thought I have Cholestatis of Pregnancy....which is a liver condition specific to pregnancy, that goes away after you give birth. Anyway, the treatment is Urso. So, I was on Urso for the last 4-5 month of the pregnancys. I felt soooooo much better once I started the medication and I had a perfectly healthy baby girl!

    I've heard of PBC getting both better AND worse during pregnancy. Not sure why some improve and some get worse, but that seems to be the case. I also have psoriasis (another autoimmune disease) and it completely went away during pregnancy (and then came back with a vengence afterwards). So, one of my autoimmune diseases got better during pregnancy and the other go worse...go figure!

  • Generally, the concensus is to come off Urso for the first trimester or so, then go back onto Urso again thereafter.

    As with so many questions with PBC, this sort of thin hasn't been clinically researched, with split cohorts, etc so a definitive answer isn't available to us. Often, pregant ladies will be diagnosed with PBC. We know that pregnant women are more heavily monitored and screened for abnormalities, so that in itself doesn't surprise us.

  • Hi all that answered thanks I was just curious as to how many women have had positive and how many have had a negative experience of pregnancy when they had already been diagnosed prior to the pregnancy with pbc. I know I for one would certainly not want to get pregnant again due to my experience but just wish for the sake of other young women with a diagnosis of pbc to kwow whether or not they should have any more children. This is another big area of the effects of pbc that needs researched and please God some point in the future I would like to either carry out such research or just do some major fund raising to get some other more brainy person to carry out such research! In meantime have to await the call for my assessment for possibly going on transplant list. P.s. Having just read latest issue of bear facts big thankyou to all there at the pbc foundation who have helped me so much with advice and support over last ten years and i for one think you suit the hairless look Robert keep up the fab work hope to meet in perso some day to become a volunteer support group leader bfn :-)

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