This is a reach out to any members who have been through or are currently pregnant while having psc!
I would be most grateful to hear your experiences and any words of advice. I’m hoping my pregnancy wont be too problematic. My consultant advised me to start ursidol in second trimester however I do worry as to whether there are any side effects for my developing baby.he has said it is safe to take but it doesn’t stop my anxiety as there haven’t been any clinical trials done to back this up.
I was only diagnosed last December and have been doing well apart from occassionaly tingly itchiness at night.
thanking you in advance.
Hi, pregnancy for me was just fine. My liver function tests did not increase from their usual elevated states until the very last month of my first pregnancy. But even then, my hepatologist was not concerned. I had been on the transplant list (2000-2006) but since psc did not progress as fast as they initially anticipated, all that waiting around gave me time to get married, build a carrer and home ready for a family. I was considered at risk pregnancy so extra visits etc. due to the psc helped reassure us that we were being well cared for. In 2007 I had my first (induced about 1 week early to due increased bilirubin), and my second child two years later. Birth and breast feeding etc all no issues. Bad itch, but that was normal for me and helped a bit by cholestyramine powder.
Now I’m on transplant list again with a 6, and 8 year old which has its challenges. When I was first listed it was just me (and my mom’s) coping I had to worry about, now it’s kids and husband who tend to take the lead in my worries. But I sure have made the most out of these past 9 years and it has helped keep the psc at bay longer than had I just kept my life on hold. My husband is so supportive and my kids are coping well enough with mommy and her many naps and unexpected stays at the hospital. Families find ways to cope, and if you’re lucky maybe your psc will remain at bay until you’re a grandma and beyond!
Good luck, let me know if I can help answer any more
Julia
Hi,
I was on Ursidiol in the beginning of my second trimester when my liver enzyme levels were too high. I just had my baby July 13th. At that time they thought I had Cholestasis, then last month they finally diagnosed me with PSC after my levels never returned to normal. I never had any side effects from the Ursidiol, nor did they have any effects on my baby. I saw a high risk specialist throughout my entire pregnancy, and they induced me at 37 weeks because they were concerned when my levels got higher again. I had a beautiful, healthy baby girl. She was 8lbs 1 oz and didn’t have any complications. I went through one big phase of itching, but after starting the Ursidiol it stopped luckily! Let me know if you have any more questions. It’s so nice having others to talk to who are going through the same thing.
Molly
Hi Jules, thank you so much for replying. It is so comforting to know that you had two healthy pregnancies and healthy babies. You seem to have a wonderful life despite the burden of psc and a positive outlook. I am in early stages now but do find It difficult to juggle working full time, being a mother ànd housewife that I hardly have the energy to do things for myself. It might mean I need to cut down working hours in the future as my illness progresses especially with another baby arriving!
When are you hoping for the transplant jules?
Take care
Lolly x
Jules said:
Hi, pregnancy for me was just fine. My liver function tests did not increase from their usual elevated states until the very last month of my first pregnancy. But even then, my hepatologist was not concerned. I had been on the transplant list (2000-2006) but since psc did not progress as fast as they initially anticipated, all that waiting around gave me time to get married, build a carrer and home ready for a family. I was considered at risk pregnancy so extra visits etc. due to the psc helped reassure us that we were being well cared for. In 2007 I had my first (induced about 1 week early to due increased bilirubin), and my second child two years later. Birth and breast feeding etc all no issues. Bad itch, but that was normal for me and helped a bit by cholestyramine powder.
Now I'm on transplant list again with a 6, and 8 year old which has its challenges. When I was first listed it was just me (and my mom's) coping I had to worry about, now it's kids and husband who tend to take the lead in my worries. But I sure have made the most out of these past 9 years and it has helped keep the psc at bay longer than had I just kept my life on hold. My husband is so supportive and my kids are coping well enough with mommy and her many naps and unexpected stays at the hospital. Families find ways to cope, and if you're lucky maybe your psc will remain at bay until you're a grandma and beyond!
Good luck, let me know if I can help answer any more
Julia
Hi molly, thank you for your response. Your story sounds so similar to mine. When I was pregnant with my now almost 2 year old daughter I was perfectly healthy until week 38 when my blood pressure was really high, lft's abnormal and protein in urine, they thought I had hellp syndrome and induced me a week early. But like like you my levels never returned to normal and was eventually diagnosed with psc.
I'm so happy to hear you had no adverse effects from ursidol. Hearing that has really has put my mind at ease. I've been told I'm at higher risk this pregnancy of having cholestisis in the third trimester. I'm still only in the first trimester and just taking each day at a time. Can you remember what numbers your lft's went up to when you started ursidol?
How are you feeling now?
Take care
Lolly x
,molz2307 said
Hi,
I was on Ursidiol in the beginning of my second trimester when my liver enzyme levels were too high. I just had my baby July 13th. At that time they thought I had Cholestasis, then last month they finally diagnosed me with PSC after my levels never returned to normal. I never had any side effects from the Ursidiol, nor did they have any effects on my baby. I saw a high risk specialist throughout my entire pregnancy, and they induced me at 37 weeks because they were concerned when my levels got higher again. I had a beautiful, healthy baby girl. She was 8lbs 1 oz and didn't have any complications. I went through one big phase of itching, but after starting the Ursidiol it stopped luckily! Let me know if you have any more questions. It's so nice having others to talk to who are going through the same thing.
Molly
Hi Jules I meant to ask you…did you need to go on any vitamin supplements while pregnant or would you recommend that I do?
Thank you.
Lolly x
Jules said:
Hi, pregnancy for me was just fine. My liver function tests did not increase from their usual elevated states until the very last month of my first pregnancy. But even then, my hepatologist was not concerned. I had been on the transplant list (2000-2006) but since psc did not progress as fast as they initially anticipated, all that waiting around gave me time to get married, build a carrer and home ready for a family. I was considered at risk pregnancy so extra visits etc. due to the psc helped reassure us that we were being well cared for. In 2007 I had my first (induced about 1 week early to due increased bilirubin), and my second child two years later. Birth and breast feeding etc all no issues. Bad itch, but that was normal for me and helped a bit by cholestyramine powder.
Now I'm on transplant list again with a 6, and 8 year old which has its challenges. When I was first listed it was just me (and my mom's) coping I had to worry about, now it's kids and husband who tend to take the lead in my worries. But I sure have made the most out of these past 9 years and it has helped keep the psc at bay longer than had I just kept my life on hold. My husband is so supportive and my kids are coping well enough with mommy and her many naps and unexpected stays at the hospital. Families find ways to cope, and if you're lucky maybe your psc will remain at bay until you're a grandma and beyond!
Good luck, let me know if I can help answer any more
Julia
Hi Lolly,
When I was three months pregnant is when I started having this crazy itching. That’s when I had my first liver tests and it showed that my ALT was 89, AST 59, and ALKP 908. Once I started The Ursidiol all of my levels went down into the normal range except for my ALKP after a month. The ALT and AST didn’t go up until after I went off of the medication after I delivered her. My ALKP never went below 300 though. They originally just thought it was cholestasis during my pregnancy and had no idea about the PSC. Because of the cholestasis I delivered at 37 weeks. Now my levels are really high, but I don’t meet with my new specialist for another week, so I am curious if they will put me back on the Ursidiol or not. Was your hepatologist OK with you having another pregnancy after you had been diagnosed? We are really wanting a third baby, and I was wondering now if they will suggest us not having anymore or not.
Right now I feel great. Which is why finding out that my levels were still high after delivering her was really frustrating because I was feeling so good.
How are you feeling? Have you been having any itching or anything?
Molly
I took Urso for the last 3 months of my pregnancy and I had a big fat healthy baby. Urso will help you get through your pregnancy and help your liver process it. I recommend it.
Hi molly.
I remember my levels peaked about 6 months after I gave birth. My alt was 94, alkp 355 gamma gt 273. That was when my doctor got really concerned and I started to go to seek advice from a specialist. Then after that they gradually reduced and my alkp even reduced to normal range but the other lft’s did not.
I sought advice for my liver specialist prior to trying to get pregnant again. I really wanted another baby as I didn’t want my daughter to be an only child as I am an only child and it can be hard as the full burden of care of your own parents rests solely with you and growing up I always wished for a brother or sister. Also I’m concious of the difficult road ahead with my illness and would like her to have a sibling as support.
The specialist felt that because I was in early stages of psc that another pregnancy should be no problem and he referred me to a high risk obstetrician to seek advice from her too, this lady would have specialised in pregnant women with liver problems. When I met her she felt that I should have another healthy pregnancy but that I would be at higher risk of developing Cholestasis in the third trimester and that they would treat that with ursidol. But no other complications were forseen and I felt that I could defiantly live with getting Cholestasis if that was the worst that could happen! They both also said that I would be best to get pregnant sooner rather than waiting 5 years or so just in case my condition progresses quicker than expected.I’m also expecting an induced delivery around 37 weeks from what I have read and what you have also said.
I am now anxiously waiting to see how my bloods are for the remainder of the pregnancy.
I feel very good with no itching just very fatigued which I feel is normal for the first trimester anyway. I’m hoping and praying I continue to feel this good! I got bloods done 4 weeks ago and they showed alt was 111, alkp was 158 and gamma gt 132. Do you know the significance of the gamma gt levels as they seem to be my most abnormal lft?
I also felt great when my levels peaked the few months after delivery. That is always a good sign. I would defiantly seek advise from your own specialist and hopefully you will get the go ahead!
Be sure to let me know how you get on with your specialist!
Lolly.
reese23 said:
Hi Lolly,
When I was three months pregnant is when I started having this crazy itching. That’s when I had my first liver tests and it showed that my ALT was 89, AST 59, and ALKP 908. Once I started The Ursidiol all of my levels went down into the normal range except for my ALKP after a month. The ALT and AST didn’t go up until after I went off of the medication after I delivered her. My ALKP never went below 300 though. They originally just thought it was cholestasis during my pregnancy and had no idea about the PSC. Because of the cholestasis I delivered at 37 weeks. Now my levels are really high, but I don’t meet with my new specialist for another week, so I am curious if they will put me back on the Ursidiol or not. Was your hepatologist OK with you having another pregnancy after you had been diagnosed? We are really wanting a third baby, and I was wondering now if they will suggest us not having anymore or not.
Right now I feel great. Which is why finding out that my levels were still high after delivering her was really frustrating because I was feeling so good.
How are you feeling? Have you been having any itching or anything?
Molly
Hi Emily,
Thank you for your response! I’m delighted to hear you got on so well urso and your baby was born so healthy, that is all we can wish for! It’s so comforting to hear.
Were you diagnosed before you got pregnant?
Lolly.
Emily said:
I took Urso for the last 3 months of my pregnancy and I had a big fat healthy baby. Urso will help you get through your pregnancy and help your liver process it. I recommend it.
I had FOUR healthy babies. I had biophysicals on all four after 28 weeks. I was induced in my first three at 37 weeks due to SEVERE itching. On my fourth I went on Urso at 20 weeks due to itching. At 33 weeks I took antihistamines and Questran powder until I deliveres naturally at 38 weeks. Best of luck and don’t hesitate to contact me with any other questions.
I have a very similar situation to your. They thought it was pregnancy related but turn out it is PSC. I had my daughter delivered one week early but was on no meds. She was healthy and happy. She is now 22 months and we are considering having our second. My liver specialist didn’t think there would be any issues. I would be high risk, have itching and fatigue, and she would put me on cholostyromine sp? To help with the bile acid and itch. I am currently on that because although my liver function is good my bile salts are very high.
I don’t know if anyone experienced this, but about 5 months postpartum I had a flare up. Itching, fatigue, mule cramping and blurred vision. That’s what alerted us to something else going on other than ICP.
The Dr. Thought all that would happen again when my hormone levels went back post baby.
My specialist also felt there was no research to suggest it speeds up or cause additonal damage which was my main concern. I’ve been online and have read of several women who went on to have health babies.
Good luck and keep me posted.
Dianne
As I mentioned, all four of my kids are healthy so far of course. My oldest is 10, then 7, 6, and 4 months. There was very little research when I had my son 10 years ago. I was diagnosed with PSC in 1997 and had my first born in 2006. I have flair ups mostly when I am pregnant or stressed.
Hi Beth,
Thanks for sharing. I’m glad to here that. We’re you ever put on cholostyromine during pregnancy? I was told that was safe by my dr. But would love to hear from someone who has been through. I don’t respond well to urso unfortunately so that won’t be an option.
Thanks!