Pregnant and looking for a friend

[Grace8888]

37 years old and I'm 23 weeks preggo and have new onset prurititus that is making my life hell. It starts at night and hits my hands and feet hard but also other places. My bile salts are elevated to 19 so the doc is starting me on Urso. There is a chance I have ICP, but either way they may need to induce my labor around 36 weeks. I'm terrified. Any pbcers on here that are pregnant, or had similar experience. I just feel so alone it this and no one understands the debilitating itch and fear I'm feeling.

[IAmTheGlue]

My baby is 4 months old. My doctor missed what they thought at the hospital to be ICP after delivery. I literally scratched myself bloody. A tip I have for you is get a nail brush, like what you clean fingernails with and scratch away. It will not damage your skin. Once the little bristles start to bend replace it. I read that on an ICP forum. Mine ended up being PBC/AIH overlap.

Do you have PBC ? Or are they just thinking ICP? Them starting you on Urso is good news.

[Grace8888 in reply to IAmTheGlue]

Thanks for the tip. I have PBC. I'm nervous about starting the medication. But I'm going to give it a go.

[Ktltel]

I'm so sorry you are suffering so. ❤

Have you asked your doctor about Cholestyramine powder? It can take a few weeks to have full effect but has helped some with severe itching as your experiencing. Some have said it stopped the itching.

Hope you find some relief very very soon.

Stella

[Grace8888 in reply to Ktltel]

I will ask first thing Monday! Thank you!

[happy0507 in reply to Ktltel]

I have been on the cholestyramine powder for a month and it has helped me greatly with the itching. I think that is has also helped with my dry mouth. Please ask your doctor about it asap

[IAmTheGlue]

Is this your first baby? Another thing I was thinking about is "Itchy moms." They have a facebook suipport group full of women going through the same thing with ICP. It helps to feel not so alone. Hang in there. ❤

[Grace8888 in reply to IAmTheGlue]

My third surprise baby. Lol. I am a part of that page and it helps a bit, but I'm not sure if I have ICP or if my PBC has just been "activated" thanks for your help.

[GrittyReads]

How long have you known you have PBC? Is it only recently diagnosed since becoming pregnant, or have you known for some time?

I'm a bit confused by the fact you are 'just starting' on Urso, so I'm assuming you are only just diagnosed, but if that is the case I would have expected you to be having more tests, with loads of other stuff being ruled out (eg all other possible liver conditions, as well as all other autoimmune conditions that can be linked to AMAs, and/or those that are common to people with PBC ... all being checked out). Have you seen a PBC specialist ? Is that the Doc?

Apologies if I've misunderstood, and all this has been done, and that you just want to know about the itching - you will get better advice from others, about that; I just wanted to make sure you are seeing someone senior, not just a GP getting hospital test results.

Hope all goes well and you get lots of answers from those with PBC who have been through pregnancy, and can advise on the itching.

Take care

[Grace8888]

I've known I've had PBC for three years (age 34). Confirmed through blood and then a biopsy. Told early stage two. I own a small winery so needless to say, it has turned my whole world upside down. My enzymes have been elevated sense 2006 (age 26) but no doc was ever concerned enough to look further and always blamed my fatigue on my thyroid disease. After the GI, I went to a heptologist for a second opinion. He confirmed. My enzymes had been stable for about ten years so both docs said I could wait on taking the URSO until there is any change. I am a very sensitive and anxious person and was happy to hear that I could wait. I've never had itching, I instantly quit drinking and smoking, and adjusted my diet. I felt stable. Until this pregnancy. My legs are so bloody and tore up and it keeps me up most nights so I'm pretty useless all day. My doc thinks it's all PBC related but also says it could be icp. I don't know if it makes a difference either way. I'm starting my Urso today. I'm nervous about it so she starting me at 300/twice a day. But she also didn't sound too concerned about my bile acids and hasn't mentioned retesting. I'm off to neonatal on the 14th to consult a high risk obgyn.

Thank you for taking your time for me.

[christen252]

Hi ICPer here. I started itching at 11 weeks and demanded my biles be done every two weeks. They finally rose at 28 weeks and I was diagnosed with ICP. As far as I understand, you NEED to be diagnosed with ICP while pregnant if your BA EVER go over 10. Check out ICPcare.org and their facebook group for info. I had to fight my OB and they finally sent me to Maternal Fetal Medicine where they decided to take my baby at 36 weeks. My BA only ever got to 23 and that was on URSO. URSO will protect the baby but you need the early delivery according to research. My little boy was born at 36 and 2 and he weighed 6lb 6oz. Ask for the steroid shots!! I realize this is an older post and I hope you already had a safe delivery. Please reach out if you have questions.