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Posted 10/22/2007 1:45 PM (GMT 0)

I wonder if there is anyone who has been taking imuran while pregnant / trying to conceive? We have been thinking of starting a family in the near future, but unsure of the effects of the medication & unborn baby.

I was diagnosed with total colitis earlier on this year and have been on Imuran for over three months now, which has thankfully made my flare-up easier to deal with.

 

My GI advised me to stay on Imuran, while trying to conceive, as the risk of flare-up is higher than the medication itself.

 

I have read quite a bit of different advice on the net, but there doesn't seem to be any conclusive information.

 

I would love any advice & personal experiences to help us decide what to do.

 

Posted 10/22/2007 2:10 PM (GMT 0)

My doctor also feels that it is better to be on Imuran while pregnant than to be flaring.  Are you in remission now?  It is always better to be in remission when conceiving because the rule of thumb is whatever state you are in when you get pregnant - you will typically remain that way throughout the pregnancy.  It is also easier to conceive when you are not flaring.

Good luck.

Posted 10/22/2007 2:13 PM (GMT 0)
When I was recently pg, my GI told me that they used to be so sure that Imuran would cause serious birth defects that abortion was recommended.  She went on to say that more and more women are having healthy babies while on Imuran, so they are changing the standards.  She also said that because the studies are fairly new she is hesitant to prescribe Imuran for women in child-bearing years.  I stayed on Asacol, Rowasa and used cortenemas and prednisone at times during both my pregnancies.  Best of luck to you.

Posted 10/22/2007 2:20 PM (GMT 0)
I too am on Imuran and would like to start a family next year after all is good w/my health. After knowing that I could pass UC on to my children (my mom has it) , I don't know how I feel about risking Imuran, plus I want to be able to breast feed which from what I have read is a no-no but not sure about preg. I think the Imuran may pass over more through breast milk than through the placenta???

GI says Imuran is ok, it is a class "D" drug (I want a 2nd and 3rd opinion). Asacol is a class "B", which is known to be safer to a fetus. I haven't made any decisions yet on what I want to do, I need to be on something, just don't know what that will be for me since I can't take the 5ASA's.
Posted 10/22/2007 7:06 PM (GMT 0)
bump
Posted 10/23/2007 12:48 AM (GMT 0)
Interesting topic..... (this is Nathan's wife)
Nate's doctor said that, as a man, he definitely absolutely CANNOT father a child while on Imuran and my iud is not enough protection and we need to use another form of birth control on top of that to completely ensure no pregnancy occurs.
It seems hard to believe that it is THAT terribly bad to father a child but then not so bad to be pregnant while on Imuran the whole time.
Posted 10/23/2007 12:52 AM (GMT 0)
I think the difference is that a woman's eggs are all formed ahead of time, and only ripen one at a time during our reproductive years, while a man's sperm is made new, so would be more susceptible to having damage in the dna of the sperm.
Posted 10/23/2007 3:10 AM (GMT 0)
asacol is safe because it does not pass through the placenta. I was on immuran the whole time i was pregnant. I saw three obs who specialized in high risk pregnancies and all three said it's alot better to take the med than to risk it a flare. Immuran is a class D drug, but one of the drs i saw said, even though there are a ton of class d drugs, there are very few that are actually that dangerous to the baby, and he has been doing this for probably 30 years and do i figure he knew what he was talkign about, lol
Here is the most imporant thing you can do, and everywoman shoudld do this, start taking folic acid NOW, before you even think about getting pregnant, at least 4 miligrams a day (this is what i was told by all my drs) and start taking prenatal vitamins too, or a flintstones is just as good, as long as you take the extra folic acid, it's been shown to help prevent spinal birth defects. i probably won't get the numbers exactly right, but i can giv eyou an idea. All women have the risk of having a baby born with spinabiphida (one of the main worries from immuran) their risk is like .1 percent. Women on immuran go up to 1 percent. However with folic acid you go dwon to .4 or .5 percent. Not a big difference there. Anyway, the reason you need to be takign the folic acid and vitamisn now is that the brain and spinal cord are formed in the first few months, alot of times before women even know they are pregnant.
If you do decide to quit the immuran it can take up to six months for it to clear your system. But i did take it the whole time i was pregnant, and i have perfect little boy, he is two now, and super smart, i am not being a braggy mom, just saying this to show that it caused no problems, he speaks in full sentences, he knows the alaphebt, can do basic addition and some subtraction, he knows all his numbers and colors and shapes, he can sing just about any song, even part of "american pie" so it obviously did no damage to him.
anyway good luck with whatever you decide to do!
Posted 10/23/2007 3:58 PM (GMT 0)
I too, have been trying to get the answer to the question of trying to start a family while on Imuran. (from the males point of veiw) I have talked to different pharmasists, doctors, GI's and got different answers from all, ranging from "OH YA, NO PROBLEM, GO AHEAD." to "ABSOLUTELY NOT, DO NOT TRY AND CONCIEVE WHILE ON IMURAN' So, I got fed up with talking with all these people and found out that the drug is made by a company in California called Promethius Labratories and I called them. I spoke with one of there specialists and he told me again, "IT IS HIGHLY RECOMENDED TO NOT TRY AND CONCEIVE WHILE ON IMURAN" when I asked if it was just a low sperm count thing or minor problem, he said, "IT STATES THAT THERE ARE VERY HIGH RISKS OF SERIOUSE BIRTH DEFECTS." I should be receiving all the paper work shortly and will be posting a thread about what I find out.

It amazes me how so many different professionals will give you different answers, when the true answer is not really known. They are only playing with the rest of YOUR life and the life of the affected unborn child. I would be VERY cautious until real studies are proven.
Posted 10/23/2007 4:06 PM (GMT 0)

FosterDad, I totally agree with you, it's very hard to decide which doctor or chemist to listen to ! As you said, we're not just talking about having something minor, this could have an enormous effect on the unborn baby devil

I have decided to let my colon to settle for couple of months and then, if it stays calm, to come off Imuran before trying to conceive.

I am also worried about the length of time you should be off the medication for it totally to leave your system. Some say it's anything between 3 - 12 months ! That would mean that we won't be able to start even thinking of babies until some time late next year...

Best of Luck and let us know how you have decided to proceed :)

Posted 10/24/2007 9:08 PM (GMT 0)
my understanding with class D drugs (though I should say up front I have NO medical background. but, my fiance does a PhD at the med center at Duke University, which is a pretty good med center, and he does lots of reading on medical stuff, so I guess this is really coming from him more than from me).... Class D drugs are drugs that should not be taken during pregnancy. But, the reason they are assumed to be bad during pregnancy is because no one has tested them. there is no scientist/drug company/med lab that wants to run a clinical trial on mothers or unborn fetuses, so there have been no tests run on the long-term effects of class D drugs on fetuses. so, because there is no info, they are assumed to be bad. it is more a lack of knowledge than a certainty that they are dangerous.

having said that, I think the jury is still out on this. we think about it too because we want to start having kids sometime soon.... I know the cleveland clinic keeps people on Imuran during pregnancy (a t least, that is what my GI told me) , and they are pretty respected for handling UC. but some still shy away from it. I don't think there is a definitive answer, unfortunately. Like so many things with this disease, the sense I get is that you have to find a GI you trusts and just decide what you're ok with. personally, my concern is that because there are no longitudinal studies, no one knows if there are problems later in the child's development. I figure in 15 years there will be data collected on all these babaies born in the last few years while the mom was on Imuran. But, we don't have that data yet... UGH, I hate all of this. This questions REALLY stresses me out. I have noi dea what we'll do.
Posted 10/25/2007 2:48 AM (GMT 0)
I recently had a similar situation. I told my GI Dr. that my husband and I would be TTC anytime. He answered all of my questions about Imuran and of course said the benefits outweigh the risks of flaring during pregnancy. I have pancolitis, and it has never been to the point where I had to go to the hospital etc. Anyways, I felt comfortable with my Dr and decided I would stay on Imuran during pregnancy. I ended up going to a new GYN once I found out that I was pregnant. She was worried about me being on Imuran and wanted me to get off of it immediately. The GYN said I should NOT take it b/c of the high risk of birth defects, she even called specialists at Arnold Palmer Hospital!

Well, it turned out that I had a very early miscarriage, which might have been a mixed blessing. My GI and GYN Dr do not agree on my meds, but I have decided to get off of Imuran and increase Lialda. If I begin to flare, I will try remicade. GYN says that remicade and even steroids are safer than Imuran during pregnancy. There are so many safer drugs to control UC, I would recommend finding a class A, B.
Posted 10/25/2007 5:37 AM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=17&m=772400&g=772743#m772743
Posted 10/25/2007 11:33 AM (GMT 0)
Isn't amazing how there can be so much conflicting information. I'm in the same boat. I had a healthy pregnancy and healthy baby girl 15 months ago. My UC was under control before I got pregnant and gave me little if any grief during the pregnancy. 6-8 weeks postpartum was a whole different story, and I've been struggling for the last 13 months to get my UC back under control. Unfortunately, during this time my UC has gotten worse and getting it under control has proven to be more difficult than in any of the 14 years I've had the disease now.

In fact, I'm sitting here typing this at 4 am, because my 30 mgs evening dose of prednisone (60 mgs total - 30 morning, 30 night) revs my system up and I'm WIDE awake by 3:30 to 4 am. I am contemplating if I should start my taper today. I've been on 60 mgs for 2 weeks now (20, 30, 40, before that) and my GI wanted me to get everything really good and stabilized before tapering, because this is my last shot. If the taper doesn't work and the Colazal can't hold me in remission then I'm going to start taking 6MP (similar to Imuran from my understanding). I too am scared to death about starting this medication especially since my husband and I would like to try to get pregnant in the next 3-6 months.

That being said, my GI has pretty much said the same thing as the other posts, that the risk of having a flare in pregnancy are worst than staying on the drug. I would love to get pregnant and hope that the pregnancy hormones help keep the UC under control, but you can't really count on that. I can't remember who said that typically whatever state your UC is in when you get pregnant you tend to stay that way. I feel like I have a small window of opportunity. To get in remission, hopefully get pregnant, have a healthy pregnancy and baby, and then deal with the UC afterards. Unfortunately, I doubt that is reality, and I too, will struggle and worry about taking a drug like 6MP or Imuran while pregnant. I suppose the only thing we can do is talk to our doctors and find ones we trust. I did see my OB the other day and she said for peace of mind, she would like me to see a high-risk pregnancy doctor, just so we fully know what we are up against if the time comes and I'm pregnant taking 6-MP.

Post Edited (LWW1993) : 10/25/2007 5:41:26 AM (GMT-6)

Posted 10/25/2007 12:57 PM (GMT 0)
Is remicade safer during pregnancy than imuran?
Posted 10/25/2007 1:12 PM (GMT 0)
According to my GI, Remicade is safer. At the Cleveland Clinic, they have had quite a few health Remicade babies to date.
Posted 10/26/2007 12:11 AM (GMT 0)
My doc said that remicade is safe to have babies on and they have lots of women there doing it. And from what I read you can nurse while on it too since it's put into your blood and is really too large to pass into your milk...and if it does it's a small amount that won't matter. My doc wants to put me on imuran along with the remicade for 9 months or so to keep me from making antibodies, but I might ask him if I can hold off on that part since we wanted to ttc...well, 6 months ago now, so. When we asked about imuran and pg, the nurse who does the remicade infusions said that they have "imuran and remicade babies all the time and they're all healthy". Now whether that means remicade babies and everyone has been on imuran at some point, or if they were on it when they got pg, I don't know. She made it sound like it was ok to be on imuran though.
I agree that most of it is that they don't want to be liable and noone is going to do the studies. But for many people nowadays, it's either an imuran/remicade baby or no baby at all.
Posted 10/26/2007 2:07 AM (GMT 0)
I can't believe so many of us are in the same boat.  LWW1993, we are in almost exactly the same position -- I have a 15 month old baby and flared post-pregnancy in a terrible way and I've been trying to get things back under control ever since.  We'd really like to have another baby soon, but I want to be healthy first. 

This is such a timely topic as I'm actually going to the GI tomorrow morning and 6mp and Remicade are the next steps for me.  He feels comfortable with me staying on 6mp should I get pregnant as he tells me that many transplant patients who take much higher doses have delivered many healthy babies while on the drug. 

I'm actually more concerned about breastfeeding as I really want to breastfeed a second baby as long as possible - I had to suddenly wean my daughter at 5 months because I was on such high doses of prednisone and it was one of the worst things I've ever had to go through.  I've been doing a lot of research on 6mp and pregnancy and breastfeeding.  The most recent information I got from Motherisk (a service offered by major Toronto hospitals that provides the most current information on medication and pregnancy and breastfeeding) was that 6mp at low doses was compatible with breastfeeding as long as the baby's development was monitored closely. 

It is a very difficult decision to make though and I'm still not sure if I'm comfortable going on 6mp and getting pregnant.  I feel slightly more comfortable with Remicade alone; however, I'm not sure if my GI would consider putting me on Remicade alone.  Protocol seems to indicate that both drugs should be taken together to increase effectiveness and the likelihood of not developing antibodies.  I'm going to ask him tomorrow what he thinks.  I can report back if others are interested. 

Unfortunately, I don't have much choice at this point as I cannot take prednisone anymore (osteopenia and it makes me so crazy I refuse to be on it again), and I have to take something as the maximum Asacol dosage and Pentasa enemas just aren't working any longer.

It is so awful for so many women to have to make these tough decisions in their childbearing years.  It creates so much extra stress that we really don't need.  Hopefully as more studies come out reporting on pregnant women who've taken these drugs we can rest a bit easier.

 

Posted 10/26/2007 2:27 AM (GMT 0)
something i want to mention is that while drug companies won't PUT women on immuran while pregnant, they will take info from women who are doing it (does that make sense?) while i was pregnant i signed up for a study on another drug, and i gave my GI and OB permission to give info relating to my pregnacy and all to researchers in those fields.
My thought was that maybe me having to be on those meds could help other women. So, if you feel comfortable doing it, let your drs know that they can give your info for researh, or find a study yourself, some will pay you for your time
Posted 10/26/2007 4:38 AM (GMT 0)
Redheadedmama - Wow! We really are in the same position. One of my biggest fears about 6mp is the breastfeeding issue too. I know that is secondary to delivering a healthy baby, but yet it's something we think about. I'm 32 years old too and really would like to conceive again soon, but need to be in remission, find my window of opportunity and jump on it. Funny thing is, I had my blood tested this week to see if I was even able to tolerate 6mp and my GI's office called. The medical assistant said my white blood cell count was high and wanted to see how I was feeling. I told him I felt fine. I had a head cold a month ago, but have felt fine since. I asked if that meant perhaps my UC was still flaring and not fully under control (hard to tell when on 60 mgs of prednisone). He said he wasn't sure and would have to talk to my GI. I'm at the point where I need to find a long-term solution. I'll be interested in what your GI tells you tomorrow. I haven't explored the Remicade route yet.
Posted 10/26/2007 5:03 PM (GMT 0)
Update from GI: so my GI told me at my appointment today that he feels quite comfortable with me taking 6mp and getting pregnant. He isn't up to date on breastfeeding issues though. He is referring me to a high-risk ob/gyn who deals also deals with pregnant women and IBD drugs. He also feels comfortable with me taking Remicade while pregnant, although, of course, he qualified that he can't make guarantees and he pointed out that no one know the long-term effects on babies of taking these drugs since they haven't been followed for that long yet.

He told me that it protocol in most parts of Canada for patients to take both 6mp and Remicade together because the believe is that 6mp reduces your chance of producing the anti-bodies to Remicade that would render it ineffective. However, he said that one major hospital in Canada holds the opposite view: that Remicade should be taken alone. He recommends taking both together. So here is my dilemma: should I take both or should I just take the Remicade alone? My hesitation in taking both together is why expose the baby we hope to conceive to more drugs that is nessary if one could work alone. Plus, I understand that 6mp and breastfeeding is a bit more controversial than Remicade and breastfeeding is.

I left the doctor's office saying I'd start both drugs, but now I think I'm changing my mind. I think I might prefer taking Remicade alone. I don't want to hijack this thread, so I may start another thread on this. Any experience or advice from others is welcome.
Posted 10/26/2007 5:13 PM (GMT 0)
crazy all of us breeeders huh..
and i feel ya LWW1993 it is 3.15am here and my 50mg of prednisone taken at 8am wont let me sleep at all.
grrrrr... i just want to sleep...

as far as a baby... i just had another bc shot in sept cuz of my year long flare... and now i am on imuran.
planned on getting pregnant and just cant at the moment.
but i want to asap.

the shot wears off at end of dec. and i wanna try. but im on imuran...
what to do?

in australia, the royal womans hospital authority says that imuran does NOT cause birth defects. it does however cross into the placenta and breast feeding might not be a good idea.

doctor says its better to be on imuran than flaring while preggers.

why cant life be easier heh... its bad enough we have this stupid UC , now we have to worry about whether we can breed a normal baby.
Posted 10/26/2007 5:26 PM (GMT 0)
Just one thing that I want to point out... someone mentions this in an earlier post, too... Doctors can only say that these drugs do not cause defects at birth. They cannot say what the long term effects are, as these are newer drugs and there have been no studies. The cold, hard fact is that they do not have any proof of this.

When I think of these drugs, I am reminded of the medicine that was prescribed to pregnant women for morning sickness years ago and did not cause birth defects... only to find that once those babies grew into adults thirty years later, they did have issues directly related to that drug (I can't remember the drug name). So, while the drug did not cause defects at birth, it did cause defects later in life. Those defects were well documented, and the drug manufacturers ended up paying out a lot of money to the victims.

Any drug that crosses the placenta is going to affect your baby in utero. Period. It's just a question of how. If breastfeeding while on these drugs is bad, why isn't it also bad for the baby in utero? Caffeine affects a baby the same in utero as it does via breastfeeding. Crack cocaine affects a baby the same in utero as it does via breastfeeding. So, I am confused as to how we can distinguish between in utero and breastfeeding for 6-mp and Remicade... with respect to long-term health issues for the child.

This is just my two cents and the thoughts that pop into my head when I am reading all of your posts. I don't mean to be a downer! I am pregnant now (23 weeks) and am fortunate to sustain my remission with Asacol and Rowasa , with minimal use of Prednisone during a flare. I feel for all of you. It took us a very long time to conceive, and I know that I am blessed to have been able to do so on class B drugs and in remission. I just want you all to really take the time to think about the conflicting information on these two drugs and babies. Even my GI, who tells me about the healthy Remicade babies he has had all the time, states that he can't guarantee that there won't be health issues later in life for those babies.
Posted 10/27/2007 1:40 AM (GMT 0)
Ok...I still havent received the information that I am waiting for from the Lab that makes Imuran (they are in California and were evacuated from there building due to the fires) but I just got back from the pharmacy and picked up my prescription of Imuran. When you pick up a prescription they always give you the write up of how to take the meds, common uses, cautions and possible side effects. The information I am about to write on here is writen exactly as it is printed on the monograph and the information comes from Wolters Kluwer Health, Inc. Database Edition 07.04 (im only writing the information pertaining to this thread)

"FOR WOMEN: THIS MEDICINE HAS BEEN SHOWN TO CAUSE HARM to the human fetus. Avoid becoming pregnant while you are taking this medicine. IF YOU THINK YOU MAY BE PREGNANT, contact your doctor immediately. This medicine should not be used to treat rheumatoid arthritis in pregnant women. THIS MEDICINE IS EXCRETED IN BREAST MILK. DO NOT BREAST-FEED while taking this medicine."

As soon as I get the information from the Labratory, I will post any more pertanant info.

Be cautious.
Posted 10/27/2007 5:00 AM (GMT 0)
Fosterdad and Expecting 226 - I completely agree with both of you. How are we supposed to know what to believe and who to trust? I think the paperwork that comes with my Colazal says something about not taking for more than a certain number of days or something, yet it is a drug you stay on indefinitely when you have UV. The off-label use of many drugs is not formally documented and it's hard to know what is acceptable vs. experimental.

Expecting226, I've wonder the same thing as you all the time about taking a medication while pregnant, but not while breastfeeding? I don't get it? Seems like it all will eventually get to the baby one way or another. I can't tell you how many times I asked both my GI and my daughter's pediatrician last year about taking prednisone and Colazal while breastfeeding. I would always try to time to feed her immediately after taking my dose, because I would think that there was no way it could reach my breast milk so quickly.

So what do we do? I would love nothing more to hope and believe that if I got pregnant again that my body would behave like it did in my first pregnancy. My UC was pretty much a non-issue. Fact of the matter is postpartum my UC has 100% completely changed on me since I was first diagnosed at 17 years old. I could pretty much get away with anything and doing anything. That is not the case anymore. I'm afraid that if I'm naive and hope that the hormones from pregnancy miraculously heal my UC while pregnant that I'm setting myself and baby up for harm. I need a back-up plan. I just saw my OB this week who I could tell didn't want to comment on me taking prednisone or 6mp while pregnant and is referring me onto a high-risk OB who I will see later in November.

Whatever we do decide is my "back-up" plan, I know I will always struggle with the decision. Is it best for me and is it best for the baby. No easy answer....
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