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03-16-2016, 10:37 PM   #1
mg22
 
Join Date: Mar 2016
22 weeks pregnant with a flare

Hi All,
I am new to this site hoping for some help/support. I am 22 weeks pregnant and as of last week experiencing a flare. I have been flare free for the last two years. I went to my GI doctor today who suggested I either start remicade or prednisone. Prednisone is where we are going to start in hopes it will help and things will clam back down. My question is how many of you have taken prednisone while pregnant? I am feeling so overwhelmed and helpless over this disease right now. I am so worried for my baby. Any help/advice is much appreciated. Thanks for taking the time to read this.
03-17-2016, 08:16 AM   #2
laura2015
 
Join Date: Feb 2015
Hi there,

what are your current results that your flare is that severe? If you've bad results and have a flare would it be possible to Start with less harming medication e.g. Budenosid and very close Check ups? Remicade and Prednison are crossing the placenta and going to your Baby too. From now on your baby's immune System is being build and with these medications you're compromising it. I took Humira during my pregnancy and regret it so much as me and my Baby got tuberculosis.
03-17-2016, 10:21 AM   #3
JaimeM
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I was on Remicade throughout my whole pregnancy and everything went great.. I recently started azathioprine too and the drs at mayo told me that you maybe have a 1% higher chance of having a birth defect being on these meds than any normal person. Also it's worse that the baby/you may not be getting the greatest nutrients if you're flared. I don't think it's very common for infections from the immunosuppressants. Basically the risk of not being on meds is higher risk for you and baby than not being on it. Also it's very common to get a pretty bad flare after you deliver.. With your hormones changing so much after delivery it tends to mess with our bodies worse than normal people.

My only thought is, starting a med during pregnancy might be kinda tough. I wouldn't necessarily want to go on a biologic while pregnant if there was another option. Just because you don't know your reaction.
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Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
03-17-2016, 11:46 AM   #4
mg22
 
Join Date: Mar 2016
Thank you for your replies.

Laura2015 my symptoms are manageable - I have some urgency at times and have some blood in my stool. I contacted my dr about Budesonide to see what his thoughts
are. From what I read it's more localized? Meaning less would come in contact with my baby?

JamieM - I agree that the benefit out weighs the risk when it comes to starting medication. Were you on Remicadee prior to getting pregnant?
03-18-2016, 09:49 AM   #5
JaimeM
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I was on Remicade for several years before getting pregnant. All babies come out with a weak immune system. Basically my dr said that it isn't going to affect their immune systems that much. Obviously situations can happen where you get sick and then the baby gets sick. But that could happen even if you hadn't been on the immunosuppressant. When I had my little guy, it was the middle of flu season. So we just stayed home for a month or two. Didn't let anyone sick handle him.. Basically what you would do for any newborn. You're cautious of sick people. He's very healthy now.. Is rarely sick.

If your dr thinks it's safe I would go for it.. They know a lot more about meds and what affects what where. I thankfully was very healthy during my pregnancy. I felt the best I ever had, minus the pregnancy issues lol.
03-18-2016, 01:41 PM   #6
laura2015
 
Join Date: Feb 2015
Budenosid Works locally as far as I'm informed. I'm of course not your doc and don't know your current results. I can just Tell you my opinion. However I know that docs always say that benefits outweigh risks. When my doc heared about the TB infection he just told me that ist was good that I was so persistent to stop Humir earlier and that he will only in the Most severe cases prescribe biologics in pregnancy again. However if you Need them then maybe Cimzia is an Option as it appartently doesn't Cross the placenta. If you've Never taken biologics before I recommend you to read a lot about it..also the lawsuits and the sideeffects. Tuberculosis is quite Common and therefore before starting it you always have to do a blood Test and lung xray to see if you've already tb. I e.g. Didn't have it and contracted it probably while pregnant. During pregnancy usually your immune Systems Slows down too and then the biologics..Double surpressed.
03-22-2016, 04:31 PM   #7
JaimeM
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MG how are you doing?
03-31-2016, 01:44 PM   #8
danielle.wilson411
 
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JaimeM,

Was it easy for you to get pregnant or did you have a tough time? I am recently diagnosed with Crohns after a year of my husband and I trying and one miscarriage. I have heard it can be hard for a woman to get pregnant with Crohns (especially during an active flare) but did it take a long time for you from when you first started trying to conceive?
03-31-2016, 03:42 PM   #9
JaimeM
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Yes it took a long time to get pregnant!!
Initially we were trying for around a year and then started some fertility treatments that sent my crohns into a tizzie.. So we decided that it was a "if we are meant to have a kid then we will" stopped worrying about it. About 6 months after that ended upping my remicade dose and it must have finally gotten me into remission. Anyway about 6 months after we upped my dose we ended up pregnant..

So I would say, if you aren't in complete remission then yes it is harder.. It seemed once I started feeling better we were pregnant not much longer after that..

Since then I've also had 1 miscarriage, but that was a total oopsie pregnancy. I had a csection and basically got pregnant the moment the dr said it was ok. However like I said it was an early miscarriage and after that my crohns went crazy again and here I am today.. Crazy Crohns. lol. We are hoping to have another baby but not putting too much stress on ourselves..
03-31-2016, 03:44 PM   #10
JaimeM
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JaimeM,

Was it easy for you to get pregnant or did you have a tough time? I am recently diagnosed with Crohns after a year of my husband and I trying and one miscarriage. I have heard it can be hard for a woman to get pregnant with Crohns (especially during an active flare) but did it take a long time for you from when you first started trying to conceive?
Also good luck Danielle! it's always a frustrating time when you want to be pregnant so badly!
03-31-2016, 04:16 PM   #11
danielle.wilson411
 
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Thanks Jaime,

It definitely has been hard not being able to conceive but I'm glad we finally may have some answers as to why I wasn't the past year after my miscarriage. I think I was having a flare from the day I miscarried and that was last April so its finally good to have a diagnosis now and hopefully get back into remission here soon and stay there. Keeping my fingers crossed that it happens and trying not too stress about it either. But that definitely is the hardest thing!
03-31-2016, 04:34 PM   #12
JaimeM
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What medications did they start you on?
03-31-2016, 04:59 PM   #13
danielle.wilson411
 
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My doctor only wanted to start me on Pentasa in the hopes that it will work (even though he admitted it normally doesn't with Crohns patients) but he wants to try just in case before we move on to other drugs that may have serious side effects. I am currently tapering off of Prednisone too and hopefully will be off within the next few weeks so I will know if the Pentasa will work on its own. My doc gave us the red light for conceiving until we get it all figured out so that's a little frustrating too if we keep waiting and waiting for the Pentasa to work. I meet with him next week so I think I'm going to have a more serious conversation about medications because I know there are some you cant/shouldn't take when trying to conceive so I want to make sure he doesn't lean towards those first. I guess I just have to be patient which isn't my strongest quality......
04-01-2016, 10:24 AM   #14
JaimeM
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I ended up being at the mayo clinic recently for my crohns and they put me on imuran and remicade.. They said no matter what to stay on those even through pregnancy. That the risk of it affecting the baby wasn't very high, and that undernourishment would be worse. I went on Cimzia after my baby, I had read that less crossed the placenta, knowing we wanted more kiddos, but it didn't work for me. I started with the top-down methodology for my crohns so we did entocort for 6 months when I was initially diagnosed then went to Remicade, was on that for several years, then the cimzia failed so we are back to remicade, but adding on imuran. I hope they get you in check soon. I know nothing of pentasa, just what I've read on here. How long are they giving the pentasa? Sometimes it's nice to have a deadline.
04-01-2016, 10:47 AM   #15
danielle.wilson411
 
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From what I've heard it should work after about a month and I got out of the hospital February 22 but was first put on Pentasa on February 11 after a colonoscopy. So it should be working now on its own but I'm still tapering off of prednisone after my hospital visit so once I get off of that I am hoping I don't immediately go into a flare because I'm just on Pentasa. I'm not quite sure how long flares last since this is my first experience but last time I talked to my nurse she said that it can take a few months to clear them up. She said they are still hopeful that the Pentasa will work on its own but I am not quite sure how long the doctor will want to give it a try. I'm going to ask him those questions next week. I'm tapering down on pred 10mg each week and at my last taper it didn't go so well so I am stuck at 20mg. I'm going to try again this weekend to go down to 10mg so I can at least go into my doctors apt and let him know that the taper is working or I'm stuck at 20mg. I'm ready to be off the steroids and have a more concrete plan to get me in remission and keep me there. I have a friend who is successful with Pentasa but she is also on a crazy diet where she eats almost nothing and has at least one flare a year. I'm not wanting that lifestyle if there are other drugs I can take especially since I'm trying to conceive. The doctor said my miscarriage may have happened because I went into a flare so I want to make sure I limit those as much as I can. I wish you and your husband luck as well and that you can come out of your current symptoms soon. It's kind of a bummer to know the one thing that should come easy as women gets affected by things like this. Just kind of sucks but its good to hear about other success stories!
04-14-2016, 02:15 PM   #16
adelahorn3
 
Join Date: Apr 2016
Your baby's been graced with the sense of touch! Aside from feeling, your baby also has more opacity to his or her skin than before. Read more here: motherhow.com/22-weeks-pregnant/
04-24-2016, 12:37 PM   #17
Sophia
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Hi All,
I am new to this site hoping for some help/support. I am 22 weeks pregnant and as of last week experiencing a flare. I have been flare free for the last two years. I went to my GI doctor today who suggested I either start remicade or prednisone. Prednisone is where we are going to start in hopes it will help and things will clam back down. My question is how many of you have taken prednisone while pregnant? I am feeling so overwhelmed and helpless over this disease right now. I am so worried for my baby. Any help/advice is much appreciated. Thanks for taking the time to read this.
I was told Prednisone is safe during pregnancy. My doctor was at a course while I was pregnant last year, and they were then told Prednisone during pregnancy should be okay. I didn't need it though, I was on Remsima (bio similar to Remicade). However, I would guess using as low a dose as possible is sensible, and for as short a time as possible. I can't guarantee to this information, but thought I would just let you know so you could perhaps investigate further. Remicade in week 22 should be safe (I'be been told it can be given until week 30.) I was told if I was flaring between week 30 and delivery they would give me Prednisone. Hope you get better, and hope the rest of your pregnancy goes well! Big hugs!
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05-19-2016, 07:46 PM   #18
Kbroyles
 
Join Date: May 2016
Hi All,
I am new to this site hoping for some help/support. I am 22 weeks pregnant and as of last week experiencing a flare. I have been flare free for the last two years. I went to my GI doctor today who suggested I either start remicade or prednisone. Prednisone is where we are going to start in hopes it will help and things will clam back down. My question is how many of you have taken prednisone while pregnant? I am feeling so overwhelmed and helpless over this disease right now. I am so worried for my baby. Any help/advice is much appreciated. Thanks for taking the time to read this.
I had a flare starting at 21 weeks. My doctor put me on budesonide. It helped my flare quite a bit. I would suggest being extra cautious though, and MAKE your doctors listen to you. My GI tried to tell me it was round ligament, and I ended up delivering at 25 weeks. My baby is fine now, but it was super scary. Listen to your body!!!
07-05-2016, 05:43 PM   #19
Ericahairica
 
Join Date: Jul 2016
I'm 23 weeks pregnant. Had a resection last September and have been on remicade and imuran since then. I have felt so great. Got pregnant easily but now I'm starting to flare. Diahrea, undigested food, fatigue and cramping while on the toilet. What do I do? I emailed my GI doc no reply yet. Been flaring for 5-6 days. Am I risking losing my baby?! I'm so scared. At what point is my baby's life/health in danger?
07-05-2016, 06:51 PM   #20
Kbroyles
 
Join Date: May 2016
I'm 23 weeks pregnant. Had a resection last September and have been on remicade and imuran since then. I have felt so great. Got pregnant easily but now I'm starting to flare. Diahrea, undigested food, fatigue and cramping while on the toilet. What do I do? I emailed my GI doc no reply yet. Been flaring for 5-6 days. Am I risking losing my baby?! I'm so scared. At what point is my baby's life/health in danger?
I am not a doctor, but I am confident your baby is ok. Truthfully, I would go to the ER since you haven't heard from your doctor. It is better not to wait. Chances are your GI will probably say it's pregnancy symptoms anyway (mine did). The ER will probably send you to labor and delivery where they will check on your baby and confirm everything is ok, give you fluids you're missing, and get a GI to look at you. Don't wait until you're absolutely miserable. Better safe than sorry!!! Good luck! Let us know what you find out.
07-05-2016, 07:11 PM   #21
Ericahairica
 
Join Date: Jul 2016
My doc emailed saying we'll wait if diahrea doesn't clear then she'll do stool samples then prednisone if needed. I have an infusion on 26th hopefully this calms down until then
08-02-2016, 03:01 PM   #22
mg22
 
Join Date: Mar 2016
Thank you all for your feedback. Sometimes you can feel so alone when going through this, so it's nice to hear others can understand what you are going through.

I went on prednisone and it greatly helped my symptoms. I had my beautiful baby girl in late June. I was able to get off prednisone, but now I am experiencing another flare. I know it tends to be common after pregnancy. ugh! Anyone take prednisone while breastfeeding? I am feeling like that may be the road I am heading down.
08-02-2016, 03:02 PM   #23
mg22
 
Join Date: Mar 2016
My doc emailed saying we'll wait if diahrea doesn't clear then she'll do stool samples then prednisone if needed. I have an infusion on 26th hopefully this calms down until then
Ericahairica I hope things have calmed down for you and your doing better.
08-02-2016, 07:44 PM   #24
Ericahairica
 
Join Date: Jul 2016
Thanks mg22. I was feeling good and oddly enough today I started with pain and diarrhea again. I don't know why but I feel like crap.
08-04-2016, 05:08 AM   #25
mg22
 
Join Date: Mar 2016
So sorry to hear that. I am in that boat with you right now having this disease is awful and no fun. Wishing you all the best.
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