Newly diagnosed mom

[NinaC]

Hi all fairly new to the site here i have read posts mostly and just wanted to see if there are other moms out there struggling with pbc. My PBC jurney started last december when i found out i was pregnant the doctor also told me about my liver enzymes being high. Got referred to a GI doctor and more tests later he said he suspects PBC as my AMA was in the ~160. Though we couldnt do a biopsy during pregnancy the plan was to do bloodwork every 3 months and then 3 months following delivery id have all the liver panels again and we would decide if this was a fluke due to pregnancy or PBC. The results were high AMA was about 90 this time and so my doctor ordered a bipsy. I just heard from him with the results and the news was that though i have PBC there is no damage to my liver so early diagnosis, doctor said he would like to put me on Ursodiol and monitor with bloodwork. My struggle is that i am breastfeeding and weary of starting urso until my baby is atleat 8 months however i dont want my condition to worsen as baby can eat formula if its really critical for my health to get on ursodiol as soon as possible. The research i have done comes up empty not enough data on weather urso gets into breastmilk. My other issue is id like to have another baby but now it worries me as id be on urso for the rest of my life and dont want to risk any side effects to the baby. Id appreciate any knowledge or advice you guys can share! This is all so new to me and im still processing whats happening i understand that PBC is rarely terminal these days especially with early diagnosis but i am fairly young and would like to have more kids in the future and unsure if that is risky in any way to me or the baby.

[KatherineM_PBC]

If your GI says you can take URSO and knows you are breastfeeding, you would like to think the transferred medication would not affect your baby! However, as your condition has been diagnosed early, I might suggest you don't start on the URSO just yet, but maybe stop breastfeeding at 6/7 months, so there's a bit of a compromise? As our PBC condition is slow progressing, I'm sure a couple more months without URSO wont hurt? As for the future, perhaps you could reduce your URSO dose throughout any subsequent pregnancy - some people cannot tolerate it and don't take it at all.

[Chrisprio]

Hi NinaC,

Welcome to this site. It might be an idea to contact the PBC Foundation (details above) to ask their advice about Urso and breastfeeding. If you haven't joined yet it's really worth doing so but you don't need to be a member to contact them. Best wishes, Cx

[GrittyReads]

I would talk to the trained advisors at the 'PBC Foundation' about this. They host this site on 'Health unlocked' and there is a link to the 'PBC F' site at the top of this page. There you will find email and phone info to talk to them. also loads of info on PBC and other advice/help.

Are your liver enzymes still high after having your baby? And has your info just come from your GP (I'm assuming you are in the UK) or from your liver/PBC consultant? I'm curious as I know lfts can fluctuate during pregnancy, and you've only mentioned them being high during. Also, you are putting a lot of emphasis on the AMAs and the high levels, yet AMAs alone are not enough - on their own - for a diagnosis of PBC. Plus, the levels of AMAs are not significant to the likelihood of having PBC, or its severity.

The lfts readings are more important. If they are consistently abnormal in a manner that is typical of PBC then that, plus AMAs, does indicate PBC, but - particularly after pregnancy - monitoring the lfts should continue over a period of time.

Also, was there anything else in the liver biopsy that indicated PBC? I was under the impression that a biopsy can diagnose/confirm PBC when damage to the microscopic biliary tubules is noted, but if nothing was noted ... I'm confused.

Please talk to the PBC foundation advisors. I'm afraid I can't offer advice on taking urso when feeding, so maybe they can help on that too.

[NinaC in reply to GrittyReads]

Hey there thank you for the advise i am in the US just got news of the biopsy results which i am personally confused about too the doctor said no damage but changes to the liver that indicated PBC also my LFTs have been high since last december so over the course of my pregnancy and for the 3 months after. I have not had the visit with the doctor yet the appointment is set for February so i will be askig what kind of changes of the liver indicated PBC presence. I am hesitant to beging urso also because i hear that pregnancy can mess with lfts but my doctor is pretty certain what lfts and ama =PBC. I will try the foundation also will look for second opinion before starting urso. I saw a GI doctor for all this.

[GrittyReads in reply to NinaC]

Hi, I don't know enough about quite how medical things work in the US, but I know that here, many folk with PBC strongly recommend seeing a liver specialist (hepatologist) and - if possible - an actual PBC specialist, rather than a GI. I was wrongly diagnosed by a liver guy, as having PBC, when I only have AMAs. I eventually insisted on seeing one of the leading PBC chaps in the UK - even though he is halfway across the country - and he reversed my diagnosis to AMA+ve only - which makes a big difference with insurers. Also, the difference in the 2 for feedback on PBC was colossal.

I also know the PBC chap guided another woman in my (AMA only) situation through her pregnancy but she no longer posts on here (I'm in my 60s, and AMA+ve since 1992, and no signs of PBC, but no children, so no help to you there). If you can get your various lft results, that may help if you email them to the 'PBC F' people when you contact them. NB I think there is a US PBC group 'US PBCers' (not sure??) which may be able to help more.

I do hope you get some solid answers, and soon. Take care, and enjoy yourself with your baby: try to relax, have fun, enjoy life and stress-bust all you can !! ( stress = worse thing for any autoimmune condition).

[lauralocks123]

Hi there, I have not been formally diagnosed with pbc yet as amas are negative. However i have elevated enzymes enough to put me on urso. The consultant feels I will eventually develop it and that my first pregnancy kick-started the issue in my liver as I had obstetric cholestasis. I was advised that urso is not absorbed by the body so is safe for use during pregnancy. I took it during my first pregnancy - I had to to bring my liver elevations under control. My baby boy was born healthy and happy at 38 weeks. Do speak to the foundation and your doctor about this medication and seek their advice but from my experience it was fine.

[NinaC in reply to lauralocks123]

Thank you for the response! Thats good news as id love to have another baby. Were you breastfeeding with urso also or did they advise against it?

[lauralocks123 in reply to NinaC]

Sorry for the late reply. I didn't breastfeed so not sure on that one. I would presume it would be fine since urso does not reach the blood stream but best to check with your specialist.

[Betonarme]

Almost same story in the case of my Wife. In last few weeks of her Pregnancy she started itching especially nights. Doctors gave her Urso but no further investigation. We were also cautious because of the Baby while She was taking Urso and decided for early delivery per Caesarean section. We agreed that this is so called "Cholestasis of pregnancy" which is a rare Condition but is not necessarily linked to PBC, at least not in all cases. So Delivery was the Cure. Indeed after the Delivery Itching was gone. But after few months my wife was complaining about a pain on the upper right side of her abdomen. Her internist was not able find any cause....So I suggested to ask another Docs.....Finally first one we visited put the diagnosis with Blood test(AMA positive & other Liver enzymes).

I think how the PBC starts is all different from person to person since Medicine still don't know its cause & Cure (I think none of the any autoimmune disorder has a cure now)

Finally, I would also suggest to visit a specialist regarding your questions.

Best Wishes