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Crohn's Disease
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Posted 1/16/2009 2:57 PM (GMT 0)
I am a 23 year-old female that has been on Remicade Infusion since September 2007. I became pregnant in November 2007 and continued my infusions throughout my entire pregnancy up until now. I had no complications during my pregnancy. It actually pushed my Crohn's to the back burner. I had no stomach pain, no bloody stool, etc. My son was born 8/2/2008 weighing in at 8lbs. 1.1oz and was 20.5" long. He was and still is a healthy, growing baby boy.

Throughout my pregnancy, I was sick everyday. I threw up 5-7 times a day. I only gained 18 pounds while being pregnant. Now if that was a side effect or not of receiving infusion, I have no idea. Many women I have spoken to were sick throughout their pregnancy. (Women not on Remicade. Like aunts, and my Mom's friends).

There are no studies, unfortuantely, on Remicade and Pregnancy. You would think they would log this stuff and compile studies, but no. Why do that? While I looked for all the information, I could possibly find on the topic, women who stopped their infusions during pregnancy, were 75% more likely to have surgery immediately after giving birth. It was more detrimental to stop the infusions then to continue them. Unfortuantely, Remicade is to new of a medication to record it's effects. Only time will tell with both me and my Son, but so far, so good. If anyone has any questions, please feel free to ask. I am more than happy to help and ease any fears someone may have.

Posted 1/16/2009 3:05 PM (GMT 0)
Congrats on your baby. I hope you both continue to be very healthy. :-)
Posted 1/16/2009 3:58 PM (GMT 0)
There is a researcher in NC, I think, who is compiling data on CD patients and their pregnancies. I can't remember her name at the moment. She was at a conference and told the pregnant and soon to be preg women that they could just voluntarily send their info.
Posted 1/16/2009 4:25 PM (GMT 0)
No scientific data to provide you - only personal experience. I would chalk up your sickness to the pregnancy. I have had 3 successful pregnancies and with both of my daughters I was sick as a dog and didn't gain a lot of weight. I had a son in the middle of the girls and that pregnancy was completely wonderful from beginning to end. With the girls I had the same cravings and the morning sickness was the same and ended around the same week. Weird. I know they chalk a lot of that up to old wives tales, but something about it must be scientifically true because my pregnancies with the girls were identical even though they were about 5 years apart. I took remicade during the first two pregnancies and at the beginning of the 3rd, but then switched to Humira.
Posted 1/20/2009 3:16 AM (GMT 0)
Hi everyone,
I need some guidance and reassurance. I am going to be 8 weeks pregnant next week and have a remicade infusion scheduled for this coming Friday. I am so scared to go, I think it is the not knowing that is killing me. I wanted to try and push back my infusion until I was 3mths but my specialist has said absolutely not because I could develop antibodies towards the med and then my body would reject it.
I am just nervous and hoping everything will go ok.....Did the ladies that stayed on remicade go throughout their entire pregnancy?????? please can you let me know.
I want to trust my specialist that he would not miss lead me but there is just a part of me that is scared of the unknown...
please let me know
Thank you.
Posted 1/20/2009 3:34 PM (GMT 0)
JAX - I had the "high" dose of remicade (10mg/kg) with my first baby starting at 5 weeks pregnant and every 5 weeks throughout the pregnancy. Last infusion was at 35 weeks and then I had one after baby was born. She will be 5 in April and is one of the smartest kids I know. :) I know I'm the mom so it's hard not to be biased. She's healthy and there were NO complications.

I had remicade with my 2nd pregnancy too, last infusion at 32 weeks because new data shows remicade can cross the placenta somewhere between 30-32 weeks pregnant. That child is healthy and great too.

Don't be afraid. I know this is new territory. Take your remicade. All will be well. Search the posts here. There are MANY MANY MANY of us who have healthy remicade babies. Good luck. AND - CONGRATULATIONS on your pregnancy!!!!!
Posted 1/20/2009 6:39 PM (GMT 0)
Stef17

I can not thank you enough for all the encouraging words you have provided me with.

You are right, this is new territory and of course I am extra nervous because it is my first pregnancy. 

I am always using your personal experiences to get me through this time and to explain to others that it is OK to stay on remicade. 

It is a new experience for me and I think I will have a piece of mind when I go see my OB between my 11-12 week for an ultrasound.  It is the not knowing that scares me.

I have to put faith in my specialist, OB and GP that everything will be ok and I feel more comfortable knowing that they all have the same consensous about staying on the med...

I go every 8 wks for my infusions and my specialist wants everything to remain the same, he said it will be more of a risk for the baby and myself to monkey around with the dosing schedule then it is for me to just keep everything consistent.

Thanks for listening, I am trying my hardest not to worry and just go with the flow tihs Friday..but it will be the most difficult thing I have ever done.....I CAN DO IT...

Thanks again and wish me luck

JAX443 :)

Posted 1/20/2009 8:10 PM (GMT 0)
You CAN do it. I have 3 healthy gorgeous kids to prove it can be done. And I'm not the only one. There are lots of women with perfect remicade babies. Your doctors are right. Healthy mom=healthy baby. Every 8 weeks is pretty spread out for your infusions, so that's good. You'll only get about 4 infusions the entire pregnancy. Really, that's not bad at all if you're worried about the baby - and like I said before, remicade doesn't even cross the placenta until 30-32 weeks, so really - baby will only be "exposed" directly one time, if that.

It's a fine line we "sickies" have to walk when we are on meds and we're having a baby. This is a different situation. You have a chronic illness and you have to keep yourself healthy for the sake of your baby. It's great that you have consulted with all of your doctors and it's even better that they all agree that staying on your meds will be the best thing. Having been-there-done-that, I wholeheartedly agree. Don't worry. If you could see my monkeys, um, I mean, kids--- you would know that you have NOTHING to worry about. :) Good luck! You'll do GREAT!
Posted 1/20/2009 9:20 PM (GMT 0)
My daughter was born 9/9/08 and I stayed on remicade throughout my entire pregnancy. I had my first infusion at 7 weeks and my last at 31 weeks. My Ob wasn't as excited about me staying on it, but my GI felt there was no other option. I was scared too and then at 32 weeks when my GI's office called to say that the baby wouldn't be able to have vaccinations that were LIVE until 6 months (because I received remicade in the 3rd trimester), I FREAKED OUT!! I cried for 2 days to everyone I spoke to. I was so worried that I had done something that might harm her in some way. She is perfectly healthy and the happiest baby I have ever seen. The only thing she hasn't been able to get was the roto-tec (rotovirus vaccination). I was undiagnosed during my first pregnancy and on no medications and it was horrific!!! The worst experience of my life and almost led me to getting my tubes tied so I wouldn't have to worry about going thru it again. I'm glad I didn't. Listen to your heart and trust your drs. What's best for mom is best for baby.

Goodluck and Take care!!

Posted 1/20/2009 11:33 PM (GMT 0)
oh and btw, no one ever told me about the vaccine thing, so #2 did get the rototeq at 2, 4, & 6 months - no problems whatsoever. Not saying that's permission to go ahead with the vaccines, just saying that his exposure to the remi didn't hurt him.
Posted 1/21/2009 6:47 PM (GMT 0)

Thanks once again

I will keep you all posted on my progress. I will be going for my infusion Friday morning...I will be thinking about all the great experiences everyone has had the entire time I have to sit there.

I am so glad I joined this forum, it has really given me a piece of mind and has provided me with the encouragement I need during this time..

Thanks JAX443


Post Edited (JAX443) : 1/21/2009 11:50:07 AM (GMT-7)

Posted 1/27/2009 8:46 PM (GMT 0)

Hi Again,

Well I did it Stef 17!!!!!! I went for my infusion this past Friday.  I was a nervous wreck the entire time but tried hard to relax and think about all the positive feedback I have received from everyone.

So far I feel great I am just over 8 weeks now, so I hope everything remains well and that I will be ok.

I will keep you posted. My next infusion is not until the end of March.

Thanks again

Jax443

Posted 1/27/2009 9:08 PM (GMT 0)
YAY! I'm glad you got through it all right. I'm glad you're feeling well. I will keep my fingers crossed that all remains calm and that your little bean keeps growing great. Keep us posted for sure!
Posted 1/30/2009 9:33 PM (GMT 0)
I am a new member. I thank all of you who give of your precious time to sharing your experiences with us. I am confused right now.

I have taken Remicade for about 2 years. I discussed my desire for pregnancy with my GI prior to and during Remicade. He stated I needed to be healthy in order to conceive and maintain a pregnancy. Eventually I became pregnant and called to inform my GI as soon as I knew at 4weeks. He advised me to continue with Remicade because having a flare up would jeopardize the pregnancy.

Unfortunately at the 16 week ultrasound, a couple of weeks ago, the dr. (maternal/fetal specialist) detected VSD (Ventricular Septal Defect) which is a hole in the wall separating the bottom two chambers of the heart. He stated the hole often closes before birth and advised me to come back in 6 weeks for another ultrasound.

I went home to ponder this information, looked at my calendar, and realized I had an infusion during the same week the baby’s heart develops. I shared my discovery with the dr. and he stated heart and esophagus problems have been reported with Remicade babies. Hoping to do everything I can in hopes the hole will close, I asked the dr. his thoughts about me continuing Remicade. He stated the defect occurs in the first trimester and thinks I should continue with Remicade. I shared the VSD discovery with my GI and he stated he had not heard of problems with Remicade babies and advised me to continue with Remicade.

I did some research before pregnancy and did not find information about side effects to babies. However, with more specific information, I have found about two articles about heart/intestinal defects in Remicade babies on a Google search. According to the American Heart Association, 9 out of 1000 children are born with a heart defect yearly. I wonder is this statistic higher for Remicade babies.

Right now, it is wait and see for my husband and I. We are hoping the hole will close. I wonder if I should stop Remicade. I am scheduled for an infusion in two weeks. What do you think?
Posted 2/1/2009 12:24 AM (GMT 0)
These are the two articles I referenced earlier.

http://www.everydayhealth.com/specialists/arthritis/kitridou/qa/pregnancy-affected-by-RA.aspx

http://www.medscape.com/viewarticle/538036

For the second article, you have go toward the bottom for fetal complications.

I am so happy for those of you who have had uneventful pregnancies with Remicade. Please pray for the healing of my baby.
Posted 2/2/2009 6:32 PM (GMT 0)
I found the name of the doc I heard at a Crohn's conference. She was talking about having a registry of pregnant women to track their outcomes. The presenter was Kim. L. Isaacs, MD, PhD of University of North Carolina at Chapel Hill. I'm not sure if she was the one who had the registry or if she was recommending it.
Posted 6/9/2009 4:23 PM (GMT 0)

Good News!

I continued with Remicade in February as I began to feel sick.  We (hubby and I) decided a sick mother creates a sick baby.  Later in February at the 22 week ultrasound, the maternal/fetal dr. observed the VSD hole was becoming smaller and he thinks the hole will continue to close and cause no future complications.  I remain positive and have continued remicade.  I am looking forward to the birth of the baby in July.

I gave copies of the aforemention research articles to the GI and discussed my concerns with him.  My GI and I did explore other treatments if I felt totally uncomfortable with continuing Remicade.

Below are links to research articles that discuss placental and breast milk transfer of remicade.

http://www.ncbi.nlm.nih.gov/pubmed/17045211?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=1&log$=relatedarticles&logdbfrom=pubmed

http://www.ncbi.nlm.nih.gov/pubmed/

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