Taking Urso first trimester of Pregnancy

[KiwiPBC]

Hi there,

Very surprisingly we have found at 42 years old we are having a baby - not what was planned but we are happy, our last baby was 11 years ago! Anyway, when I was last pregnant Urso wasn't highly used so I was not on it... Do any mothers out there have any experience Of taking URSO in their first trimester of pregnancy? Very little data available for this, it appears 2nd trimester much more common. Thanks in advance!

[Jlruggie]

Re: Kiwi and links to PBC.

My messages don’t appear properly. Posts and comments are not showing together. My apologies if this comment isn’t related exactly to KIWI post. I see it says Kiwipbc. I have been diagnosed with pbc through high enzymes, anti mitochondria antibody and biopsy, later reconfirmed with mri. I also have allergy to kiwi and chronic UTI. Chronic UTIs are linked to PBC, I’m wondering if there’s a kiwi allergy linked too. Does any one have an allergy to kiwi?

After 20 years post pbc diagnosis my only symptom is itching on my forearms and shins which started 2 years ago. I get little itchy red spots. Dermatologist took biopsy and diagnosed it as catch all “dermatitis.” I guess it’s due to pbc. GI Hepatologist wouldn’t say one way or the other.

My GI Hepatologist played around with my taking Fenofibrate with My usual Ursodoil to lower enzymes but I had flu reaction. Then she left the gi group. The new GI has nothing to say about a lowering enzymes so I go around with high enzymes and progressing liver biliary deterioration.

Does anyone have dietary suggestions beyond no alcohol, no additives, low fat, high vegetable, meat free diet to lower enzymes?

Thanks

Jlruggie

[Candy12]

Congratulations Kiwi, I think everyone’s pregnancy and PBC is unique , so you need to follow your doctors advice.

[KiwiPBC in reply to Candy12]

I am very aware of that, thank you for your concern. I am also a nurse, it is just that there is very little evidence of using iris first trimester so even the doctors are unsure

[Hidden]

Hi Kiwi!

Congratulations on your pregnancy

I found out I had pbc when I was pregnant with my second baby in 2018, I was 4 months pregnant and itching terribly so the first thing I’ll say is being pregnant might possibly make the itch a lot worse.

I was started on urso straight away to try and bring my liver enzymes down, they particularly worry about bile acid levels as unfortunately there is a risk of stillbirth with high bile acid levels, it’s unknown why. They tried to get me to 36 weeks pregnant to deliver then but the urso just didn’t help a lot and my bile acid levels were getting higher and higher so they delivered the baby at 31 weeks.

I’m not saying that this will happen to you, I just wanted to let you know what pbc did to me when I was pregnant.

Strangely enough I didn’t have pbc when I was pregnant with my first, so I’ve developed it in the 7 or so years between my first and second pregnancy! X

[KiwiPBC in reply to Hidden]

Thank you so much for your reply! I’ve started on Urso again, my LFTs have gone up so Drs think it’s best I stay on it to try and stabilise things. I was ok during my first pregnancy, but my son was delivered 6 weeks early as I developed severe pre eclampsia - PBC patients can have rocky pregnancies. I’m hoping to keep on top of everything and remain as healthy as possible.

Really appreciate you responding

[Hidden in reply to KiwiPBC]

Not a problem, I take it from your reply that you stopped taking urso for some time? X

[KiwiPBC in reply to Hidden]

Yes they took me off it, but I restarted today, fingers crossed everything settles

[Hidden in reply to KiwiPBC]

I wonder why, it’s my understanding that people with pbc should be on urso for life 🤔 . Yes fingers crossed for a healthy pregnancy, you must be so excited! Xx

[mjk98]

You need to talk to your doctor about that none of us are qualified to answer that question congratulations u must be so excited

[KiwiPBC in reply to mjk98]

Seriously people are allowed to ask questions, there is very little evidence available for pregnant women with PBC. I am not a stupid person and I am working very closely with my doctors, I was only asking if anyone out there has any experience personally with this.

[mjk98]

Really calm yourself all I was saying was ask your doctor if that offended you too bad I think you're a little too sensitive do not address me again

[KiwiPBC in reply to mjk98]

I am not sensitive, I just get frustrated with people saying the obvious. I was a liver transplant nurse for many years, I have a lot of understanding of the liver and PBC. Urso has not been used that long and very little documented data on it being used safely in first trimester of pregnancy. Even my drs are unsure hence why I’m asking if anyone has personal experience. I was not asking for anyone to prescribe or adjust my Urso.

[Gjt777]

Hi kiwiPBC! Congratulations on your pregnancy! I just had my youngest child 6 months ago and was on urso throughout my entire pregnancy with no issues. My pregnancy was monitored closely, but I didn't have any problems and baby boy is healthy. I also happen to be a nurse! Where do you live? I live in the US in Washington. Best wishes! ☺❤

[KiwiPBC in reply to Gjt777]

Hi thanks so much for replying, I’m so pleased to hear of your healthy baby boy! Do you mind me asking your age? I have started itching pretty bad, I don’t normally have too many symptoms of PBC but I’ve heard the pruritus can get pretty bad, hoping mine settles down.

I live a very long way away from you - New Zealand! hence the KiwiPBC name (the bird Kiwi, is our national animal, looks like kiwi fruit 🙂)

[Gjt777 in reply to KiwiPBC]

Sorry this is delayed! I will be 40 this year so I was 39 when I had my son. I didn't have any issues, not even the itching. Did they test your bile acid levels with the itching? My Dr checked mine quite frequently, even without symptoms. Hopefully the itching settles down for you. Being pregnant at our age is hard enough without the extra symptoms or at least it was for me! 😅

And yes, you definitely live far away! I was hoping you were right around the corner. We could have met up for a sparkling water or something.

You take care! Would love to hear how things are progressing with your pregnancy. ❤😊

[KiwiPBC in reply to Gjt777]

Nice to hear from you again - wouldn’t that be nice if we lived close by 🙂 Well if you’re ever in New Zealand, look me up 😬

I don’t think my Doctor has checked my bile salts yet, I am due for my next appointment this Wednesday so I will request.

Yes pregnancy not easy at this age and definitely don’t need any other symptoms on top of it. My itching has settled today, so here’s hoping!

Maybe I’ll keep in touch via private chat 💕

[Hidden]

Hi KiwiPBC, congratulations, all will be fine. I was pregnant at 40 and went through routine testing when liver function tests came back high. Sent to a specialist and immediately put onto Urso when approx 12 weeks. I was classified as their “special case” due to being older and pregnant with PBC. I had a normal pregnancy and delivered 3 weeks early. My child is a healthy and normal 12 year old. Yes I was itchy but not dreadful and I think it was more from the Urso than the PBC. Best wishes 😊

[KiwiPBC in reply to Hidden]

Thank you so much for your reply! Yes they are treating me as ‘special’ and a bit of a fuss to be honest! I think I’ve just had a biochem flare with getting pregnant, so hopefully everything settles down and I can enjoy the ride

I appreciate you messaging 🙂