I have permission to post (see case history below).  This woman is a very well educated (Masters level) health care professional (an RN) with ulcerative colitis.

She is looking for personal and/or professional insight (prior to conceiving) regarding Imuran & pregnancy/breastfeeding, and this is beyond my professional scope or experience.

She has herself already searched the Lactnet archives and even consulted Dr. Hale.   Any feedback that I could pass on to her would be greatly appreciated.

Thank you,

Leslie Ashton, RN, BSc
Policy & Political Action Network Officer
Childbirth Nurses Interest Group
Registered Nurses' Association of Ontario


Quoting the client/colleague in question:

- the ulcerative colitis has been really awful and quite active (essentially I've been flared up for a year) 

- on third course of prednisone (awful stuff)

-  specialist has suggested that considering how my disease has progressed (based on last scope and biopsy), that the regular medication (salofalk) that I'd taken for years, is no longer going to work to control the disease and has therefore suggested Imuran, which you may know is an immunosuppressant, used often for rheumatoid arthritis, but has also been used for 20 or so years in patients with severe crohn's or colitis as well.
 
-  Imuran is a sort of last-resort type drug, and is prescribed for the long-term (i.e. potentially forever, if it works). 

-  next step would be surgery, if that fails

- However, I have many concerns about Imuran. Firstly, being a nurse on an immunosuppressant worries me somewhat. No, I'm not in direct clinical practice right now while teaching and in grad school, but I'm certainly around many people who are. Last thing I need is for my immune system to essentially be shut down, and come down with a cold that lasts 5 months! The other thing is that Imuran has the potential to wreak havoc with the pancreas, liver and WBCs, and so one's blood is monitored very closely (once a week for 3 weeks, then monthly from then on). My issue is that I had an episode of unexplained pancreatitis about 7 years ago.  One of the rare complications of this medication is pancreatitis,and so is contraindicated in those who have a history. My specialist doesn't seem too concerned, since it happened so long ago. My concern is that if it happened once for some unknown reason, what makes us think it won't happen again?!


-  That's just a bit of background. Here's where I was hoping your thoughts might come in! My biggest concern is that it is also (depending on what/who you read) contraindicated with pregnancy and breastfeeding! The literature is very contradictory, as are the doctors on this topic. My specialist suggested that he would never prescribe this stuff if he thought it was unsafe, and that the current literature says it's fine during pregnancy. His opinion is that it's riskier for me to not be on it, than it is to be on it. My family doctor, on the other hand, suggested that under no circumstances should I go on this if I had plans to conceive! I was shocked, because typically these guys tend to stick together when it comes to forming opinions!
 
-  Motherisk (who I've consulted with) suggests that it's fine during pregnancy and breastfeeding, based on what they've got in their database. They noted a few studies that have been done that have shown a slight increase (1-2%) in birth defects. The problem with these studies was that they were done in transplant patients using the drug.  So, it's difficult to tell whether it was the Imuran that led to the birth defects, or another one of the slew of drugs they were on...or their original condition itself. Nevertheless, the potential for risk is still there. The hotline also suggested that the amount to pass through the breastmilk is so minimal, that there is really no concern.


-  Other literature suggests that under NO circumstances should one take this medication during pregnancy and breastfeeding. In fact, if you read a brochure from the Crohn's and Colitis Foundation of Canada, they say that if one conceives while on this drug, a therapeutic abortion may be warranted! Wow! Way to put it boldly. So, this is scary stuff. And, very frustrating that everyone has a different opinion.


-  I'm really sorry for the length of this. I've been trying to do so much research, but have been going around in circles, reading opposite opinions. I guess what I was wondering was if any of you have any knowledge of, or have ever had experience with a patient on this drug.  My family doctor suggested that I would definitely be referred to a perinatologist when the time came to conceive and carry (which I'm hoping might be in about 9-12 months, so long as I'm healthy enough).  Unfortunately, this drug isn't one you can go on, and discontinue when the time comes. Once you're on it, you're on it for the long haul.  The risk of a serious flare-up when discontinuing is apparently very high.  So, this decision is a lifetime one).


-  Dr. Hale's response was somewhat reassuring. He suggested that Imuran while breastfeeding is "probably moderately safe", but that the baby should be followed very closely by a good pediatrician. I guess the trick is finding one who is willing to take the risk with me, and to support the decision to breastfeed.

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