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Posted 1/14/2008 7:31 PM (GMT 0)
Question: Is it Ok to be on Remicade or Imuran while pregnant? Who told you this, Gi or OB?

The FDA says that remicade is class B for pregnent women. OK during pregnancy if neccessary but not for breastfeeding. Imuran is class D, not to be used unless completely neccessary. (info at fda.gov)

My GI says both are fine and he has had patients deliver healthy babies while on one or the other.

I have read various things here and am curious who is more cautious with this info ob's or gi's.
Posted 1/14/2008 7:49 PM (GMT 0)
high -risk BOGYN saw last week: No to Remicade for pregnancy and breastfeeding, ok for Imuran but not ideal
GI: No to remicade, maybe ok for Imuran, but was more hesitant to say Imuran ok than my OB.
Posted 1/14/2008 7:53 PM (GMT 0)
My GI and OB both told me that Remicade is fine for pregnancy but not for breastfeeding. Both said 6-mp or Imuran is not a good idea during pregnancy or breastfeeding. Both said they would rather see a pregnant woman maintain remission on Prednisone during the entire pregnancy than on Imuran.

I have researched all of this ad nauseum, and I will say that there is A TON of varying information out there. There are definitely different schools of thought. For me, at the end of the day, I have chosen to follow what my GI, OB and Pediatrician advise because it seems to match up with the majority of the information out there. It can all be very confusing...
Posted 1/14/2008 8:06 PM (GMT 0)
And there you go - a perfect example of the different schools of thought that are out there on this!

I just wanted to add that I see a high-risk OB as well.
Posted 1/14/2008 9:43 PM (GMT 0)
expecting - that is so interesting. my GI said pred is ok during pregnancy, and the OB said they'd prefer I be on Imuran than pred during pregnancy. crazy...... the fact that there is no concensus actually concerns me a great deal.
Posted 1/14/2008 10:05 PM (GMT 0)
It is very interesting and concerning that there is so much conflicting information. I have been struggling with it for the 3 and a half years it took us to conceive and throughout my pregnancy.

My OB said Pred is no big deal during pregnancy because it doesn't cross the placenta. He said he has women on Pred for varying conditions during pregnancy all the time - i.e. asthma, pneumonia, etc. I freaked out when I was told I needed it for the flare (my research on that issue is actually how I found the Healing Well forum), and my OB was like, this is not a big deal at all... relax.

At the end of the day, I suppose there are no guarantees with anything when you are pregnant or are trying to conceive. There are women who are in perfect health before getting pregnant and who don't even take so much as a Tylenol while pregnant only to have babies with serious problems. Then there are women who are sick and on medication who go on to have healthy babies. It certainly seems like an art, not a science, unfortunately. And, to be honest, I am seeing one of the best GIs and best high-risk OBs in the country. Both are with the Cleveland Clinic and are very well-respected. So, I know they are up on the research, etc.

I think a lot of the discrepancies come from the fact that many of the medications we IBDers are using are relatively new (i.e. Remicade). The babies that were born to women on those medications are still young children. Perhaps we won't know the full effect until they become adults? I don't know. And, of course, there is always the issue that studies aren't run on pregnant women - with good cause, of course - so it's all on a case by case basis.
Posted 1/15/2008 12:20 AM (GMT 0)
expecting - I agree with you about the problem being the newness of the drugs, at least in part. I worry some that a child born on Imuran might appear fine and then display problems in their teenage years, or sometime later. If I had a child that ever had problems - even as an adult - I am sure I'd feel responsible because of my Imuran use.

Interesting that your docs are at cleveland clinic, as I had heard (but not verified with research) that the cleveland clinic was one of the places saying babies born on imuran is now ok..... what a mess this all is. I know that there is concensus that methotrexate is not ok, too bad we aren't on that, huh???

so, another question while we're on this topic. my OB said that what they tend to see with IBD-ers is that the patient has a very good remission during pregnancy and then tends to flare after the baby is born. did you hear anything like this at Cleveland clinic?

congrats, by the way, on your pregnancy. how is it going? is 2/26 your expectating date ? (just wondering based on your screen name)
Posted 1/15/2008 3:35 AM (GMT 0)
My OB and GI both said no to Remicade while pregnant. I would never want to get take it while pregnant. Remicade is part mouse proteins and it just hasn't been around long enough for anyone to know what effects it will have down the road, especially on a baby. Just because a baby comes out appearing healthy doesn't mean it may not face health problems. There are other drugs we can take - yes, I'm including the dreaded prednisone - so we don't have to take those kind of chances.

I've heard that too that pregnancy can put women into remission, however, it's the opposite for some women, such as myself. My last two pregnancies were my two major flares since diagnosed with UC. The second time around I started having blood and d and I just knew I was pregnant. Who needs a pregnancy test? Good luck.

Posted 1/15/2008 2:42 PM (GMT 0)
UCinNC - Yes, many women experience a blissful remission during their pregnancy. Mine has been more of a rocky road. I was in remission for several years before I became pregnant. Then, I flared during the first trimester. Pred got that back under control, and all has been fine. Now, I am having some issues creep up that I think are signs of a flare again. At this point, it's hard to know if the bowel issues are the start of a flare or just a symptom of late pregnancy because my flares usually start with blood and I don't have any this time. Just some D this time, which I never get. So, I am monitoring it and keeping my GI and OB both up to speed.

As for UC after pregnancy, I was told that it breaks down like this - 1/3 of women's UC will improve, 1/3 will get worse, 1/3 will stay the same. It's hard for the docs to predict what 1/3 you will be in. Someone on the boards went to a conference several months ago where one of the leading GIs discussed pregnancy issues. If I recall correctly, she pretty much brought back the same information.

Overall, my pregnancy has been great. Little bit of morning sickness in the beginning but nothing terrible. Little bit of anemia but nothing terrible. Truthfully, my husband and I waited so long for this that I would tolerate anything. We are just so excited! My due date was 2/26, but I am having a c-section at the request of my GI, so I am now scheduled to have the baby at 7:30 a.m. EST on Monday, February 18. We can't wait to meet the little guy!

My GI requested a c-section to preserve the pelvic floor and anal sphincter muscle. This way, if I ever need a colostomy, I will be a candidate for the j-pouch reconnection. My OB was completely on board.
Posted 1/15/2008 2:54 PM (GMT 0)
Yeah that was me that went to the conference. There is another one in march here in the chicago area that I will go to again and hopefully get more info. You can get to my notes by typing in pregnancy and UC in the google search.

It seems that no docs agree. The FDA says remicade is safer than imuran but not many docs seem to agree. Remicade has been used for over ten years now, even though that is still regarded as new in pharmacuticals. I know my GI won't put me on pred when i am pregnant. I have spent too much time trying to get off of pred, he has already said i won't be on it again. I wish that was on option while pregnant for me. Unfortuneatly i have to look at remicade and imuran.

Expecting...I haven't heard that having natural child birth can hurt chances of a j-pouch later ! anyone have more info on this?
Posted 1/15/2008 3:05 PM (GMT 0)
In a nutshell, here is what my GI and OB told me about the c-section.

Many women (who do not have IBD) develop fecal incontinence after a vaginal delivery. It all depends upon the delivery, but it usually happens with women who have had large episiotomies. Or with women who had a particularly difficult delivery that caused a lot of damage to the rectal area, anal sphincter and/or pelvic floor. This causes scar tissue to build up. So, if you have fecal incontinence and if you have a lot of scar tissue, it becomes difficult to preserve the necessary components for the j-pouch surgery. They can take muscle from elsewhere in your body and use that to build a new one for you, but it is obviously not as good as having your original parts intact.

I had a consult during my 7th month of pregnancy with both my OB and GI, and my GI was explaining his reasoning behind the c-section request. My OB said that he remembered seeing a woman with a total proctocolectomy who had to have muscle used from elsewhere in her body, and "it wasn't a pretty sight." The next words he said were, "we will do a c-section." So, that was that.

I, too, am curious what others' experiences were with this.
Posted 1/15/2008 8:27 PM (GMT 0)
Expecting - February 18th, eh? You must be getting so excited! I still have 3 months to go, but everything with the UC is under control now, so I'm feeling much better about it all. No one has mentioned a c-section to me yet. Guess we'll wait and see. Hope everything continues to go well. Congrats!
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