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*UPDATE* Found out I am pregnant and I just started Remicaid and was feeling better

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Crohn's Disease
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Posted 2/15/2011 8:51 AM (GMT -8)
Hello Everyone, Well I went to the hospital yesterday and found out that I am definatly pregnant. They took a blood test and I waited about 2 hours for the results. They said I am very early (maybe about 3 weeks) and I need to decide what I want to do as far as having it or having an abortion. It wasn't a GYN or GI doctor he said he really didn't have any knowledge on crohns disease, Remicaid, and pregnancy (especially at my age which already puts me at high risk). He made me feel like the best thing for me to do was to abort it. I am hurting so bad right now (emotionally). My husband and I are still both in shock. I have had 8 pregnacies in my life and have 8 kids (22 to 5 years old). I never had an abortion, because of my beliefs, and now I find myself feeling so trapped. I just can't believe this, for the last 4 years I have been so out of it from crohns (especially the last 2) and I am finally enjoying life with my kids and husband (because of the Remicaid). I was very malnurished before starting the remicaid and I am so scared that is going to happen again. I am worried about all my intestines being pushed and something happening to me (I do have 8 kids that still need me).

Is there anyone that is around my age that has been through this? Can the nurse at the infusion center refuse to give me my infusion? My next infusion is Feb. 24th and I wasn't going to tell her. I just don't understand if the GI doctor said it was pretty safe to take during pregnancy then how can the nurse tell me they won't give infusions to anyone who is pregnant? I hope someone on here can really help me get through all of this. My head is going from one thought to another.

-Mia 

Posted 2/15/2011 9:26 AM (GMT -8)

Bless you Mia, and everything you are going through.  It sounds like the best next step may be to get appts with your GYN and GI and have discussions for the best treatment for you and your baby.  My wife is on a variety of medications, and her GYN was able to direct her to safer, category A/B drugs before we tried to get pregnant.

Some quick hits I found doing a web search:

I found this old thread from this website regarding Remicade and Pregnancy:

https://www.healingwell.com/community/default.aspx?f=10&m=421385

This website says that the FDA classifies it as a Type B drug:

http://ibdcrohns.about.com/od/remicade/a/remicadefaq.htm

Internet search also provides some notes from a 2004 study on this topic:

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

Posted 2/15/2011 9:47 AM (GMT -8)
Thank You CloneHead, My husband got me into regular GYN for this evening (even though I need high risk) so I hope they will be able to give some positive answers. I'm just not to sure about GYN though because they never want you taking anything while pregnant. Their concern is the baby not me :-(. My husband also called the GI doctor and we are waiting for her to call back. The GI clinic starts at 1 today and is always crowded so I really hope she calls back. I did find out it is a class B medication and is safe for pregnancy but I have just started taking the Remicaid in October and have only been feeling better for 4 months after 4 years of hell (thats what it felt like). I don't even know if my illium has healed (I don't have D anymore but i don't know if thats a sign). I also take Asacol which is another medication I dont know about being safe and I take Xanax. I know GYN does not want xanax taken but I have been on it for years and and even with the last 2 pregnancies which turned out fine (besides them being early but thats because I have an issue with my cervix). The worse part of all this is not knowing.
Posted 2/15/2011 9:58 AM (GMT -8)
My wife's doctor had a similar first stance/preference. They'd prefer you not take anything. Getting past the fact that you have to take SOMETHING is sometimes difficult, but then the discussion could hopefully move to what is the best thing to take. You flaring, losing weight, blood, etc is also not good for the baby.

You could ask whether your GYN has had a pregnant patient with Crohn's before, or someone in her practice has (not that you would have to change doctors, but someone that your current GYN could at least consult with?), or if the high risk she would refer you to would be someone with Crohn's experience.
Posted 2/15/2011 10:47 AM (GMT -8)
Nakira, your age doesn't make you a high risk OB patient IMO. Plenty of women give birth after age 35. Both of my term pregnancies were in my late 30s. There are certainly genetic defects that can happen more frequently in older moms, so your OB will probably counsel you to plan for an amnio, but you don't have to do that either. but other than that, your record of many healthy births is the best demonstration that you can do pregnancy well.

Abortion should not be on your mind just because some ER doc told you to do that. UGH!

It sounds like you are feeling well and doing well on your Crohn's meds and your Xanax. Take some deep breaths. It is early days still for this pg and there's a long way to go. And again, CONGRATS!
Posted 2/15/2011 11:05 AM (GMT -8)
Nakira - Remicade is Pregnancy Category B. It is safe to take in pregnancy. I took remicade from conception to birth to breastfeeding with my first two kids. I was in my early to mid 30's. My babies are healthy and intelligent kids, now ages 6 & 4. You CAN take remicade while pregnant. It doesn't even cross the placenta until weeks 30-32 and so they usually schedule your last infusion around that time and then schedule you for another one right after delivery. That info wasn't known at the time I had my first child and so I had infusions at 30 & 35 weeks. She is healthy and my smartest kid. No health or developmental issues at all.

I took Asacol during all 3 of my pregnancies. It is Pregnancy Category B - safe. Asacol works locally in the colon, not systemically in the whole body, so risk to the baby is EXTREMELY low. I also took asacol while breastfeeding all 3 of my kids. No issues there. You can take asacol while pregnant.

I don't know anything at all about the xanax, but you've already done that twice, so your doc can best advise you.

Stay on the remicade and the asacol and keep your baby. (S)he is not at risk because you've had the infusions and you can continue to take remicade and be healthy and your baby will be too. Congratulations!

Stef
Posted 2/15/2011 11:28 AM (GMT -8)
Hon, I agree with Stef. With proper care & monitoring you should be able to have a relatively normal pregnancy. I was on Sulfasalzine for my first and off all meds for my second and both were full term healthy babies. There have been several posts here in the past about "remicade" babies. Try searching to see if you can find any of them.
Posted 2/15/2011 11:35 AM (GMT -8)
I don't have any experience with pregnancy, but wanted to send you (((HUGS))). I definitely wouldn't take the advice of an ER dr, when they don't really know all that much about medicines, and what's safe during pregnancy. A high risk OB should have far more information to help you make an informed decision.

While most OB's try to keep patients off as many medicines as possible, it's also important for you to stay healthy and able to eat and absorb nutrients. I have a close friend who was on Cimzia during her pregnancy and they didn't think of taking her off it because she was doing bad before and was doing so well on Cimzia. Her baby is 9 months now and is healthy!

I wish you the best of luck no matter what you decide to do.
Posted 2/15/2011 11:55 AM (GMT -8)
Sweet,

I agree with all of the above. Our resident expert (from personal life experiences only) of taking meds in pregnancy is Stef17. The thought is that a healthy mother with Crohns produces a healthier baby. So its best to stay on your meds.

I agree also don't pay attention to the ER doc, you don't have to go thru the abortion because he said so. I recommend you go over this with a qualifed ob/gyn, not some ER doc or infusion nurse.

Congrats and take a deep breath, all will work out.

Hugs
Gail*Nanners*
Posted 2/15/2011 11:57 AM (GMT -8)
I support you in whatever discision you make.

P.S. Ok I got to tease you about I guess we know what you have been doing now that you have been feeling better. :)  That is great and I am so glad that you feel well enough to engage in sexual activity!
Posted 2/15/2011 12:09 PM (GMT -8)
I have found that different docs have diff feelings about the biologic meds. My CD flares too badly even when I have to skip 1 weeks dose (I am now on Humira Remi stopped working for me and I have to take it weekly) Both the GI I had in RI when I was living there and the one I have here believe it is safer for me to remain on the meds when I decide I want to have a child rather than going off of it however the GYN feels the opposite so I know for me when it comes time I will need to either have my GI school my GYN a little on how he sees it safer or find a different GYN. either way gl to you no matter what the outcome may be
Posted 2/15/2011 1:26 PM (GMT -8)
Mia,

I responded on your other message the other day, I am the one that had a baby on Remicade last year at 36. My advice to you is get your GI to suggest and OB that has some knowledge of Crohns.  Once my infusion clinic spoke with the GI and OB, they had no issues infusioning me, however they just needed both dr's approvals. There were times throughout my preganancy the 2 doctors would call each other to discuss how they wanted to treat me. A team working together is your best option. I had a normal pregnancy but was classified as high risk due to Crohns and my age. However, that just allowed for check ups every 2 weeks vs 4 weeks and more sonograms than I could count. I also had stress test twice a week during the last month and half of pregnancy. Actually I would love to be prego everyday as it was the best my crohns had been in years! There are plenty of choices regarding your treatment during pregnancy, and ones that work for you and your child to be. Best of luck to you.
Posted 2/15/2011 1:45 PM (GMT -8)
no experience.. just sending you so much love... sounds like wonderful advice from everyone here.
Posted 2/15/2011 3:41 PM (GMT -8)
Everyone on here has given you great advice. Many Many women have had successful pregnancies while being on Remicade. A healthier mom means a healthier baby. I had a high risk pregnancy, but that was because of several other factors and not just the UC I had at the time (previous stillbirth, gestational diabetes, UC which was flaring the whole time). We considered several different options and Remicade was on the list, but a second opinion at the mayo that my GI consulted with said not in the middle of pregnancy because you don't want to start new medications during pregnancy. So we held off and I continued to take my Lialda and prednisone. She was delivered at 36 weeks because of some complications that arose during my NST's (I was having them twice a week since 25 weeks) and they, the perinatologist I was seeing for the GD (I had to be on insulin because prednisone screwed things up), my regular OB/CNM, and they only consulted my GI to make sure I had my stress dose of prednisone after the birth.

I do not think abortion is an issue here and that ER dr obviously doesn't know what he's talking about. Find a new OB dr if you need to, when we were considering the Remicade my CNM and the OB's in the office were perfectly fine with taking Remicade and actually encouraged it.

I have had friends take Xanax during pregnancy because they have really bad anxiety and their babies are smart as can be!

Congrats on your pregnancy!
Posted 2/15/2011 5:53 PM (GMT -8)
See sweet all the good advice you have been given. I hope it brings you some peace. Hugs!
Posted 2/16/2011 8:27 AM (GMT -8)
i too support you in what ever you deside to do. Good luck with everything, hugs ( and lots of them ) to you.
Posted 2/16/2011 12:51 PM (GMT -8)
Hello Everyone, I just would like to thank each and everyone of you for your support. I am crying as I write this (maybe it's my hormones) because it is such a comfort to see such amazing news. My husband spoke with my GI doctor yesterday and she was very excited for us. She said I will continue the remicaid until 7 months and then go back on it after delivery. I have an appointment to see her in a couple of weeks and will ask if I can stay on it through the pregnancy.

On another note, GYN appointment yesterday was horrible. For some reason the doctor was very rude and asked why we didn't do anything to prevent a pregnancy if I have crohn's disease. She said there is absolutly no way I can continue remicaid and my husband and I almost went off on her. My husband told her he spoke to the GI doctor and she said it was fine, then the doctor said she is not a high risk doctor so she doesn't know and thats something I will discuss with them. They said I was very early in the pregnancy and they took another blood test to make sure the numbers are doubling. I called today and the numbers were good but that was only 24 hours after the emergency room so I have to go back tomorrow and call friday so they can make sure the numbers are were they should be. I just think I am VERY early and people usually don't go to the doctor this soon. It was strange because I took the First Response pregnancy test and it showed a very faint line and thats when I ran to the ER. When they did a urine test they said it was negative. My husband had to demand them to do a blood test. When the doctor came in he was beating around the bush and telling me everything else except for the Beta (blood test for pregnancy) that I forgot about it and then he says " Oh, and your betta came out positive for pregnancy".

Being that I don't feel comfortable with the GYN doctors at the clinic my husband set up another appointment at another place for a high risk doctor and I will see him/her on the 23rd of next week (the day before my infusion). I am going to keep going for the beta test because they all can see it on the computer and I won't have to keep doing it every 2 days. I really do feel so much better about my decision to keep the baby after reading what everyone wrote. I really needed this kind of support and I am so greatful for this forum. Thank you so much everyone and I will keep you posted as to what kind of fight there will be between GYN and GI :-/.

Thank You,
Mia
Posted 2/16/2011 1:04 PM (GMT -8)
Sweet nakira, I feel for you. I was on Remicade for my Crohns and after 2infusions I developed antibodies..while on the drug I was in completer remmission, I cried and fought to keep taking it, the remicade worked so good even my vision was better. When i was pregnant I went into remmission Dr explained alot of womedn due due to the placenta making sure both you and baby get nutrients. I never felt betterin my life!.But you have to make a choice and I anm sure you will make the right one. Thinking of you ...ljb



Crohns
Posted 2/16/2011 2:03 PM (GMT -8)
I don't have any children...but JMHO, this gyn does not sound like she's listening, nor that knowledgeable about IBD issues, nor a right fit for you...I would look to find a different doctor (GYN that is)...I've seen your postings and kinda want to grrrr at the nurse and the some of your other providers (wow!), I am continually amazed by the judgment factors/issues that many doctors have (esp in the ER, but I've found that GYN/OB tend to be similar)...but it seems that your GI is looking out for you...maybe ask her/him which OB doctor they would recommend to help out with your pregnancy...

I wish you all the luck in the world...take care, and hope you find some good doctors to help you out...
Posted 2/16/2011 6:47 PM (GMT -8)
Mia - Congrats on the good news from your GI

Becoming Undone - that is a great point. I've actually gotten more referrals FROM my GI doc to other docs than I have from my PCP to specialists. My GI doc knows who else in their hospital network has other patients with Crohns/IBD issues. My GI actually referred me to my PCP instead of the other way around.
Posted 2/18/2011 7:47 PM (GMT -8)
Was just on the CCFA website and saw this article on CD, pregnancy and biologics.

http://ccfa.org/reuters/biologicguidelines

The headline is "New IBD guidelines urge biological therapy in pregnancy, childhood"
Posted 2/21/2011 5:13 PM (GMT -8)
Hello and thank you everyone for your support. I have had a really bad weekend and it has caused so much stress on me that I have been running back and fourth to the bathroom again with having D again :-(. I went to counseling Thurday night and I told her what was going on (me being pregnant). Long story short, she says right away that I will have to discontinue the use of my xanax (I have taken for about 10 years for anxiety/panic attacks). I told her I didn't have to discontinue it with my last 2 pregnancies (my kids are 5 and 6 now). I have been going to this same counseling place since 2004 and have always seen the same psychiatrist who has given me my scripts for xanax but the counselor I have only been seeing a couple of years. Anyway, the counselor asks me who prescribed the xanax to me when I was pregnant before and I told her my psychiatrist and she kept saying "are you sure". By this time my anxiety has kicked into full gear and I started crying because I couldn't understand what was going on. She said their head boss is VERY strict about not medicating pregnant women and she doesn't know how my doctor there did it. She looks through the file and see's my doctor didn't hide the fact that she prescribed it to me and even writes about what was happening with both pregnancies. The counselor seemed shocked and said maybe the doctor spoke to her boss about it and for me to calm down and she left a message with my doctor (psychiatrist) to call her back.

Long story short, next morning (friday) she calls me and says the head Doctor will not let me get the prescription anymore. I was in total shock because I have been on it for so long, having to go through withdrawl will be hell for me and the baby, and the crohns is going to flare. I brought all this up and she agreed and she said she had patients to see but will call me back after she spoke to her supervisor. I waited all day crying and stressing just to get a call saying I have to wait till tuesday because she couldn't get in touch with her supervisor. She couldn't seem to say anything positive to reassure me for the next for days and I have been under so much stress. I am having D again and I can't stand it, I am not sure if its the stress or because my Remicaid infusion is coming up. I feel like I am getting another rectal abcess, I lost my appitite because I am so anxious, and I haven't been sleeping  cry  . I just can't believe all this is going on right now.

Could the D be because my infusion is coming up this Thursday? I have seton drains in so I started to soak and I hope that takes care of it. I don't know if all this is happening from stress or brcause it's time for my infusion.

I spoke with someone (today) from a research place for drugs and pregnancy and they took all my info and called me back this evening with good news and even said I can give any doctor their number so they can speak to them and they can tell them what they told me. They also informed me that the FDA is going to be changing the classes of medication (or how they do it) this year or next. She told me according to my history that its better for me to stay on the xanax as opossed to trying to taper off. They have no studies of birth defects with humans and the ones they did with animals where very high doses of the medication (nothing close to what I'm taking). I just pray the head doctor understands he will be putting me and the baby at a great risk by stopping my medication. I have tried every medication under the sun and either had bad reactions or they didn't work so Xanax is all that will help me :-(. 

Sorry for such a long post again everyone, I just really need people who understand what I am going through.

Thank You Clonehead for the link it was very helpful and thank you to everyone for all your support.

-Mia

Posted 2/21/2011 6:46 PM (GMT -8)
(((((((((((((((((((Mia))))))))))))))))))))))))))))))...again, wow, and grrrrrrr nono to many of your providers...I cannot understand...really...I don't know what to say...I really wish there was someone to help you...and don't worry about the length of your post...vent away...

JMHO, but you are on the right track, knowing what is good for you...when you are healthier, you will have a better baby, and that you have rights too...that we don't have to subjugate our needs because of a "perceived", "possible", "one in a billion chance" that it "may" harm your child...okay, getting off my soapbox, cuz really I'm kinda angry on your behalf...I don't think you should be treated like this...really...

I'm glad that you have these research info handy...I hope someone will listen...so I cannot offer a lot...just righteous indignation on your behalf...
Posted 2/21/2011 8:33 PM (GMT -8)
Oh, Mia, that counselor really needs to think hard about how she talks to her patients. You are a pregnant woman being treated for an anxiety disorder. That right there is enough for anyone to know - TREAD LIGHTLY FOR GOODNESS SAKES. Holy cow. I don't have an anxiety disorder, but being pregnant alone is enough to make you very, very emotional. And then for her to tell you that you'll have to stop your meds, and then to make you wait days. Oh, my.

BTW, have you ever read the blog Dooce? She has an anxiety disorder and writes very openly about how important it is to treat that medically even (or especially) when pregnant. Check it out if you're interested.

I hope the infusion tomorrow takes care of your current D. I'm glad you soaked your setons, that was a great idea.
Posted 2/21/2011 8:39 PM (GMT -8)
Mia, I wish you all the best hun! Sounds like a scary and frustrating situation! I hope you're able to get those doctors listening, or find new ones that will!

I've only had one child (thankfully pre-Crohns days), and I just saw my GYN last week. I take an anti-depressant for anxiety as well, along with blood pressure and my Crohn's meds. My GYN has advised me against getting pregnant again. My health just isn't the best, and the idea of having a high risk pregnancy scares me. So I make sure I'm on the pill for that, and other reasons. It's a personal choice for sure, even with my son taking a Tylenol would scare me. All these meds I'm on now would stress me out just thinking about pregnancy. But everyone has given you wonderful advice. I'm sure the high risk OB will be of better help I'm sure! Good luck!

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