Pregnancy

[Hattyson]

I'm 20 weeks pregnant and was diagnosed with pbc 7 weeks ago and am currently taking urso. Has anyone else been diagnosed whilst pregnant or had a pregnancy whilst having the condition. If so how was the pregnancy affected?

[Librarianlady]

I had cholestasis of pregnancy and now they suspect PBC. I took urso 27+ weeks and was induced and delivered at 37 weeks. At 32 weeks i had ultrasound, stress tests and bloodwork just to be on the safe side. The Urso brought all levels to normal, but I still had itching. The baby is 5 months now and good. How did you find out you had Pbc in early pregnancy?

[Librarianlady]

I also wanted to add all of the literature I read says that urso makes your pregnancy safe and risk factors are minimal as long as you respond to the urso which most do.

[Hattyson]

Hi Librarianlady, thank you for responding.

Things moved very quickly for me. At 8 weeks I mentioned to my gp I had itching so he undertook a lft. The next day I had a phone call to say I'd been booked in for a liver scan as those results were so deranged. Thankfully the scan was clear but I was referred to a specialist who immediately suspected pbc as it's so rare to have cholestasis in your first trimester. I also have autoimmune thyroid disease. They undertook ama titres which came back highly positive at at least 100 I believe. Thankfully my liver function has improved on the urso and I have today had my 20 week scan and all appears normal at this stage. My obstetrician is saying he too is aiming for delivery all being well at 37 weeks.

Am so pleased your pregnancy went well. I must admit the itching for me has been horrendous and I've been getting very little sleep.

I myself was wishing it was cholestasis and it must be a particularly stressful time for you now having to undergo further tests for suspected pbc. The good news however as you pointed out is that if you respond to urso the prognosis is actually very good, especially if pbc is caught early.

[Librarianlady in reply to Hattyson]

What was your levels if you don't mind me asking? I joined the ICP care on facebook where other women have cholestasis of pregnancy and some have other liver disorders as well. Even though they are different, they act the same. There are other women who started itching first trimester as well. I know the itching is awful. I quit working and actually nobody understood or believed how awful it was. They gave me hydroxizine which did help me personally. I had terrible hyperemesis and then felt normal for about a month and then the itching late second trimester. It was awful getting the doctors to believe it was more than dry skin. All the women on the icp care facebook use urso as well. It is an amazing drug. I think you and the baby will be fine. I wish that all my levels just went to normal after delivery like most women do, but yah know I have all these worries. I can say the itching stopped. I have teeny bit of mild itches once in a great while based on my time of the month or if I had a very fatty meal. Keep in touch.

[Librarianlady]

Did they say the itching would lessen for you after delivery?

[littlemo]

Hi Hattyson I had a baby boy 6 and half years ago. He was delivered healthy and well via c section at 38 weeks. Unfortunately I had a horrrendous pregnancy but I feel that this was down to being taken off the Urso at the start of my pregnancy and was not put back on it until the 2nd almost into the 3rd trimester as at that stage the consultant I was under liased with the obstetricians who said it was ok for me to go back on it. I take it you have been kept on it throughout your pregnancy? How are you feeling? Do you suffer with the horrible itch I have always had this but found it was really horrible during the last few months of the pregancy. I truly hope you dont suffer from it. Take care of yourself and your "bump".

[littlemo in reply to littlemo]

P.S Just re read your comments and you say you have the horrikd itch you can get Questran Light to take for it it does help. Ask your GP to prescribe it and take one sachet before and one sachet after breakfast this helps keep the itch at bay during the day. Drink plenty of water at least one to two litres a day, reduce your caffeine, sugar and fat intake these are wll things I have found help lessen the itch. I have had PBC for 12 yrs diagnosed 11yrs and have had the itch 24/7 to greater and lesser degrees. But fear not not everyone has it to this degree. Take care and I hope you have a very healthy happy pregnancy and childbirth everyone is different. x

[wrentz]

Hi, I am 36 with my first chid and currently 32 weeks pregnant. I was diagnosed with PBC about 14 months ago. My the initial symptom was the sudden onset of intense pruritus. After AMA test and biopsy, they diagnosed me at Stage I possibly early Stage 2. I have taken 1500mg of Urso every day since, I have been on everything. Naltroxene, Phenobarbital, Welchol, Prednisone, Budesonide, Fenofibrate, etc. Before pregnancy the 1 med that helped my pruritus was Rifampin. But it also gave me slight liver toxicity. Fast forward to pregnancy and I currently take Urso, Hydroxyzine, Prenatal, Questran 4 times a day, Calcium, Vitamin K, and due to an increase in itching my Hep put me on Zoloft 2 weeks ago. She is a top doc in a large city and said all should be safe. My high risk ob agrees. My recent hep panel shows a rather large jump in my ALP this month which we anticipated happenng during the third trimester. Hope this helps.

Thanks, Wendy

[littlemo in reply to wrentz]

Hi Wrentz my goodness I thought I had been on every drug known to try and combat the itch but your list has topped mine! I had a yr of truly horrendous itch from Aug 2011- Aug 2012 much like the yr I had before I was diagnosed back in 2001. The itch was chronic 24/7 so much so that my quality of life was really awful to the point I was referred and was assessedfor transplant. Prior to this I had been tried on increased dose of Urso up to 1gm daily, 4-6 sachets of Questran daily, Rifampicin then when this did not work low dose Naltrexone-no good for me either, then Zofran which helped during day a bit but not at night then low dose Morphine patches which I found made the itch worse. Eventually I went off the Urso as had read that it can cause itch and within 2 weeks the itch went back to milder tolerable levels giving me back some quality of life thankfullly. Just out of interest did you take the Rifampicin for long? Is the Zoloft working on the itch? How is your pregancy going is your bilirubin staying within the normal range?

[wrentz in reply to littlemo]

Wow littlemo! It sounds like you have had it rough for a while. I took Rifampin for about 3 months, but had to discontinue due to possible liver toxicity. It did give me a little relief as my response to Urso took about 6 months. I tried Fenofibrate for about 2 weeks but then got pregnant and had to discontinue. I can't really say if the Zoloft is working. I think I would have a better answer if I wasn't pregnant. I itch most days and have intense night time and early morning itch approximately 5 out of 7 days a week. But being pregnant can really effect this. My ALP is increasing each month. But nowhere near my numbers at the time of diagnosis. My AST and ALT are on the high end of normal at 33 and 43. The weird thing about my bilirubin is it has always remained normal. Even when my ALP was around 400, my bilirubin was 0.6. I am considering participating in the new LUM001 clinical trial if it begins after I gave birth. Thankfully I am in a participating city. Have you read about this new drug and clinical trials?

[Librarianlady in reply to wrentz]

I just found your post, because I searched the board after googling and learning about this new drug. I'm hoping it works! Have you heard any good news? Surely they will eventually come up with something as it would be quite a money maker for the drug company.

[spyro]

I was diagnosed with pbc following my first pregnancy almost 2 years ago. I had swollen eyes and blood tests showed high liver readings. I also had a liver scan & lots of other tests! I'd not had a great pregnancy with hyperemesis and gestational diabetes but I did not experience any itching. The consultant did not prescribe any meds & my liver readings stabilised. Since then, I have had a second pregnancy & my baby is a healthy 7 week old. My liver consultant liased throughout with my pregnancy consultant. I was given regular blood tests and additional scans. My liver readings remained the lowest they'd been since diagnosis throughout the pregnancy! However, the pregnancy was very difficult with hyperemesis throughout and 4 hospital admissions in total. Next week, I go back to see my liver consultant to see if there have been any other changes. Thankfully for me, still no itch. Good luck with your pregnancy

[Hattyson]

Hi Librarianlady, upon testing amongst other results my initial alkaline phosphatase was 1000, ALT 221 and bile acids 25. Regarding the itching l think it is just a waiting game. My gastro consultant says it will probably improve upon delivery but if not we're then going to explore meds to assist. I wish you the very best of luck and yes please stay in touch and let me know how you get on.

[Hattyson]

Hi Littlemo, by the time I saw my consultant gastroenteroligist I was just going into my 2nd trimester so was put straight on urso. He said he wouldn't have prescribed it during the 1st. I must admit I do find the itching wearing and it sounds as if you've got it particularly bad. For me it'd not too bad during the day but in the early hours of the morning it's the soles of my feet that drive me mad. I'm now convinced fatty foods exacerbate it do am going to cut out the fats as much as possible and perhaps keep a food diary. Thank you very much for your kind words and it's good to hear you delivered a healthy boy.

[Hattyson]

Hi Wendy, thank you for replying and giving me options which might assist with the itching. I'll certainly explore these with my consultants. I too have been told I'll be put on vitamin k and once baby arrives they're also going yo do a bone density scan. You mention you're 36. I'm 45 (so added risk of age plus thyroid disease ie. Graves). This is my second child, I have a (healthy) 4 year old daughter.

[Hattyson]

Hi Spyro, it's great to hear you have a healthy 7 week old. It's very encouraging to hear all these stories about successful pregnancy outcomes despite pbc, although it sounds like you had a really tough time during your pregnancy. The best of luck with your consultant next week and fingers crossed that you never experience the dreaded itching.

[Hidden]

Hello Hattyson.

Though I have no experience of a pregnancy with PBC as I was 46 when diagnosed Dec 2010, I've always seen urso as being rather like a supplement as opposed to a drug. After all we are introducing a part of bile acid that we make ourselves to help with food digestion.

I actually think that despite PBC your baby should be fine. The baby will take all it needs from yourself so it is the time to pay good attention to your well-being too. Urso is helping aid your liver be stronger.

Sorry you are feeling the itch. I itch at night time and it's not nice at all. Wish you well. Keep us all posted how you are getting along.

[mrspiggy]

Hi ladies, I was diagnosed 2 months after the birth of my 3rd child 2 years ago. I had abnormal LFTs 11 weeks in and then started itching about 16 weeks. It was awful and towards the end of pregnancy I was sleeping about a couple of hours a night. I couldn't sit and watch movies with the kids, eat a meal without standing up, read stories to them at night... it was a nightmare. They decided to induce me at 38 weeks but she came naturally. Itching stopped pretty much as soon as she was born.. what a relief and I was getting more sleep with a newborn than in pregnancy! :-). There was an amazing cream they gave me with menthol in it which I will try and find the name of. It didn't stop the itching but it certainly helped me feel calmer (so many showers taken at night to stop me from going stir crazy!). 2 years on and life is good.. the memory of pregnancy does haunt me though and the thought of getting that itch back sends me into a bit of a panic so I try and do all I can to clean up my diet. No booze since last Christmas and I am working on cutting out dairy and gluten, cut down on sugar and fat and I also juice or smoothie every day. But Mackenzie was born fighting fit and I look at her all the time and feel so blessed.. not sure if I would have even known about PBC if I hadn't have been pregnant! My little blessing. Best of luck to you and much love. Mel xx

[Hattyson]

Thank you all for your kind comments.

[Hattyson]

Hi Mel, thank you so much for taking the time to respond to me. You have given me a glimmer of hope that my itching too may disappear after delivery and if not hopefully improve. At only 21 weeks I fear there is a long way to go with the itching getting worse before hopefully improving. It is encouraging to hear you delivered a healthy baby. Thanks again, your story has helped me to remain positive.

[Shubhra-Rastogi]

PBC or primary biliary cholangitis/cirrhosis usually comes to light during pregnancy. Though not clear that pregnancy sparks it or not. But because pregnant women are under regular medical supervision the symptoms of PBC are first noticed during pregnancy. Pregnant women with PBC might develop itching which worsens and does not recover fully post pregnancy. Pregnant women with PBC should be monitored regularly for the presence of varices and this can be treated with beta-blockers during pregnancy.