Pregnancy and PSC

Many thanks to Dr Gideon Hirschfield for writing this summary (Gideon Hirschfield, Autoimmune Liver Disease Programme, QE Hospital, Birmingham;

As doctors diagnose PSC in women with increasing frequency, the issue of pregnancy has become more and more relevant to many of our patients.  Often there is a lot of anxiety about pregnancy; hopefully I can address some broad issues that will put minds at ease.  Obviously pregnancy is a very personal thing, and these comments are meant to be broad, and not to replace your consultation with your own specialist.  I always recommend that women who are thinking about pregnancy should raise this as a topic for discussion with their medical team so that they are comfortable with any issues surrounding contraception, pregnancy and breast-feeding.  The goal of our care must be that our patients lead normal lives and doctors should therefore do everything possible to allow normal life despite chronic ill health.

General concerns
Largely speaking pregnancy is very safe in patients with PSC.  This is because for most women their liver disease is at an early stage at the time that they have their pregnancies. Now this of course is not the case for everyone and it is certainly true that in some instances (e.g. advanced cirrhosis approaching liver transplantation or the first year after liver transplant) that your doctor may suggest delaying pregnancy because the risks to the mother (and baby) are of concern.  If this were the case then this would be discussed at your clinic visit. 
If patients have stable cirrhosis they can generally have normal (but carefully monitored) pregnancies and deliveries, but they are likely to have an ultrasound of their liver during the pregnancy, as well as an additional endoscopy to check for oesophageal varices.  Generally speaking tests such as MRI and ERCP will be avoided during pregnancy unless there is some particular concern that means they must go ahead.  Again this is uncommon and must be dealt with on an individual basis.  Similarly hopefully those with colitis will find their disease stays under control, but occasionally this is not the case: this is usually then resolved with increased medications.  Sigmoidoscopy and colonoscopy can be performed if needed in pregnancy and is safe, but usually it is done only if there is a good reason.
Women will worry about the medications they are on.  First of all don't stop any medications without talking to your doctor.  This is because keeping you well is the best way to ensure you are most likely to fall pregnant!  Secondly most of the medicines used in PSC and colitis are in fact quite safe during pregnancy (at least based on experience; it is hard to have solid trials of course).  Most women for example are able to continue Ursodeoxycholic acid, azathioprine, steroids, and asacol.   Post-transplant patients will be advised to make a change if they are taking mycophenolate mofetil or rapamycin but will not stop their tacrolimus: in this setting it is therefore important where possible that patients plan their pregnancies so that any changes in medications can be done under supervision and with monitoring of the liver blood tests.  Most transplant units will have links with large Obstetric teams who are used to looking after transplant patients.
Everyone has different comfort levels when deciding on risks and benefits of medications and you of course must find your own, having been guided by your healthcare team.  Similarly in fact breast-feeding on most medications is not of great real concern.  Some people stop azathioprine, but to be honest that is not what I advise my patients who breast feed.  Again get individual advice but try not to overly worry: lots of women have had babies and breast fed in this situation. There are strategies and alternatives, and the pressing issue must always be to keep the mother well, as that gives the best chance for a healthy baby.

Specific Symptoms
Itch can be a problem during pregnancy, and certainly we have seen patients with PSC (and PBC as well, a related bile duct disease) who have had troublesome itch during pregnancy.  In most cases medical treatments can be given safely (including starting rifampicin in a pregnant women) and the itch made manageable.  Unless the itch relates more to a bile duct blockage that happens to coincide with the pregnancy, it returns to baseline levels after delivery.  If there is a bile duct blockage during pregnancy then there may be unusual cases where ERCP is recommended, but this would be very much the exception rather than the rule, given the radiation exposure risk from ERCP.

The Baby
Most patients will have normal pregnancies, with normal deliveries and healthy babies.  Mothers who are chronically ill, and who are on chronic medications are of course likely to have higher risks and that is why an Obstetric physician who understands all the issues should look after them, and will ensure the pregnancy is monitored closely, including careful attention to blood pressure control as just one example.  In this setting then it is also sometimes the case that babies are born prematurely or a little smaller than average.  With neonatal care being so good nowadays this is something that is usually surmountable, with families ultimately taking home healthy babies.

Will my baby have PSC?
Autoimmune diseases result from a combination of both genetic and environmental risk, so of course your children must share that with you to some extent. Although your child will have a slightly higher risk than other children of one day developing an autoimmune disease (of which there are many), the actual chance that they also get colitis or PSC is in fact very very small, and realistically not something to worry about.

Written by Dr Gideon Hirschfield, 26 June 2012

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