27 weeks pregnant and FLARING...

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Crohny93
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Date Joined Mar 2008
Total Posts : 118
   Posted 8/13/2010 5:26 PM (GMT -7)   
Need to vent so bad...
have been flaring for the past few weeks, and am getting worse.  Up until now I have been on Remicade every 8 weeks and 20 mg of pred.  However, when it came time for me to get my infusion, my doc is refusing bc he believes I am too far into the pregnancy (I am 27 weeks.)  Is this true?  I heard and read that its safe to get Remicade up to 30 weeks.  The only suggestion the doc had for me was to increase my pred dosage!!!  (I never tolerated the ASA meds.)  Im just so frustrated and bc of the diarrhea am not gaining weight.  Does anyone have any experience with this? Any advice, suggestions?  Getting so desperate....and scared for my baby... 

Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 8/13/2010 5:28 PM (GMT -7)   
Oh boy. I don't know for sure but yes I've heard Remicade is perfectly safe. Print out the info you found on the internet and show your dr and ask him about it ASAP. Good luck.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 8/13/2010 6:24 PM (GMT -7)   
Search old posts. Several moms have had healthy remicade babies. There is a point it crosses the placenta, but you're not there yet. Stef17 had two rem babies and took it the whole time with her first. Arm yourself with research and talk to your doc or find a more knowledgable doc. It's important both for you and baby to nip this flare.

Good Luck!! Babies are such a blessing.
Mom to two healthy Pentasa babies. 6+ years remission, woo hoo!

Writer
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Date Joined Aug 2006
Total Posts : 443
   Posted 8/13/2010 7:06 PM (GMT -7)   
Instead of increasing the steroid dose, you could try going on a mostly or full liquid diet (enteral nutrition) for a week or two to see if that would put you in remission. It is safe during pregnancy and can be as effective as steroids. The easiest formulas to find if you just want to see if it works for you are Ensure or Boost.

sgirl
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Date Joined Jul 2009
Total Posts : 417
   Posted 8/13/2010 7:14 PM (GMT -7)   
I'm sorry! :( From what I've read you can take Remicade up to 8 (if I'm recalling it right) weeks before you deliver. Since you are only 27 weeks you will probably want one more dose. I too would be afraid to increase prednisone. I never went above 20 mg when I was pregnant because of various reasons. There are some older posts on here about remicade and pregnancy (it's actually how I found this site) I don't know if your dr mentioned this, but you will need a stress dose of prednisone after you deliver, that way your body won't go into shock.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's December 2009.
Flaring since October 2008 with occasional spikes in symptoms
Possible Rheumatoid Arthritis
Osteopenia

Medication: Imuran 75 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine, Calcium w/vit D

Rider Fan
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Date Joined May 2008
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   Posted 8/13/2010 8:44 PM (GMT -7)   
Do you have a ob-gyn that you can talk to? Can your husband advocate on your behalf? Be aggressive with your doctors - don't let them push you around and make sure you get answers to your questions.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 8/13/2010 8:59 PM (GMT -7)   
If your current doctor will not give you an infusion--GO TO ANOTHER DOCTOR!!!

Please, please, please get help! I had a serious flare during pregnancy and it caused serious problems. A flare can cause preterm labor. I know--I came dangerously close to delivering at 26 weeks. Because I had no previous experience with Remicade the doctors didn't want to start me in the middle of a pregnancy. So I started 40 mgs of prednisone and antibiotics. We got the flare under control for the most part and with other drugs managed to keep from delivering until 32 weeks. But somewhere in the midst of all that I developed an abscess and fistula. (Something Remicade can guard against)

Luckily the baby delivered as healthy as a 32 weeker can, but still spent two months in the nicu. I spent a total of two and a half months in the hospital, too. I am still trying to gain weight and strength from the whole experience. And while my preemie doesn't look "preemie" anymore, he still has preemie issues.

Please, please, please for the sake of your health, the health of your baby, and the rest of your family--try to convince your doctor to infuse and/or go up on your prednisone dose. If he won't, GO TO SOMEONE WHO WILL. (If you choose to try a new doctor, explain the situation to the new office. I'm sure they will get you in quickly if they know the seriousness of the situation.)

By the way, I didn't gain ANY weight until the flare was under control. And for 90% of the time I was in the hospital I was on TPN. When I finally got to go home, I was switched to liquid diet, then low residue. It's been three months since discharge and I'm just now experimenting with adding in other foods.

If you want to know more about my story, just let me know. It was horrible and I don't want anyone else to suffer the way me, my family, and my baby did.

Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 8/13/2010 9:12 PM (GMT -7)   
I had a really hard time during pregnancy. At the beginning, I flared, had intestinal obstructions, a heart problem, a uterine hemorrhage and almost miscarried, then got gestational diabetes and had to take insulin.
My team of specialists was considering a resection while pregnant too because I was sooooo sick and I can't go on remicade because of my heart problem. Thank God me and baby turned out just fine!

So... what ended up helping me get to 37 weeks (a planned c-section) was prednisone, pentasa, cholestyramine, probiotics, digestive enzymes, and a very very very very strict diet. I ate the same things every day and rarely strayed. I did not eat any food that might make my tummy worse.
I ate all natural food, no processed food, no sugar, if it didn't come right from the ground/plant or from an animal, I didn't eat it.
I also switched to sour dough white bread instead of regular commercial bread and I only ate rice pasta. Rice pasta and sourdough bread are WAY easier to digest.

I strongly suggest you also take a radical approach if you are desperate. And if you are a praying woman, get your name on some prayer lists. That was the most important thing I did.

Take good care of you and baby!

Post Edited (Roni) : 8/13/2010 10:17:35 PM (GMT-6)


Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 8/14/2010 6:44 AM (GMT -7)   
I had 2 remicade babies and 1 humira baby. Remicade does not cross the placenta until somewhere between weeks 30-32 of the pregnancy. So YES, you CAN get another infusion. This information has been known since 2005/2006, so I don't know why your GI isn't up on the "current" info. When I had my first baby (2004) this info wasn't known and I had infusions every 5 weeks in the pregnancy including 30 weeks and 35 weeks. She was born healthy and perfect and 6 years later is just the same- healthy, intelligent, and perfect.

You DO have options. Here is what I would suggest.

1) have a heart to heart with your doc, find out why he refuses to give it, present him with information showing that you CAN get the infusion (you will need data) and try to persuade him to give it to you. If you are already on 20mg of pred I wouldn't want to increase that dose either, so see if you can talk him into giving you the remicade. Will your OB put in a phone call to your GI? What if your OB recommended it? Would that persuade your GI to give it to you if your OB says it's ok? It will help A LOT if your OB is on board with you getting the infusion. Every time I have a baby my OB sends me to a maternal/fetal medicine specialist and they ALWAYS say that whatever is good for mommy is good for baby (barring crazy street drugs, etc). Remicade is pregnancy category B - same as tylenol! Have your OB make the call. It's really important. That way when you go to your GI you can persuade him to give you the infusion and you can set up the infusion appointment immediately.

2)If GI outright refuses to give you your infusion, ask your OB if (s)he will order it. Remicade doesn't have to be prescribed by a GI, ANY doc can prescribe it. You might have to figure out where to get the infusion if you've been getting it at your GI's office, but you CAN have another doc order the meds for you. OR you can see if a new GI will see you and order it. That will be a little more difficult since they will look at you like a new patient and wonder why your old GI won't give it. Docs can tend to take each other's side over the patient's side. So you would have to play your cards right.

3)Alter your diet in whatever way you can to help. Eliminate sugars - obvious ones like soda, syrup, cupcakes, junk food. Eat as naturally as possible like Roni said and that will help too.

Unfortunately you are in the spot where if you don't advocate for yourself you are going to be at the mercy of this dumb-dumb who won't give you your medicine. Gather all of the info you can and get in to see your doc ASAP. Call them and have them see you immediately. Tell them you are pregnant and flaring and need to see your GI right away. They need to give you an appointment THIS week. Present your info to your GI and stay level headed. You CAN do this. And listen - I know you're worried about your baby. But your little peanut will be ok. Baby will take everything (s)he needs from you until you have absolutely nothing left to give. You are flaring and suffering, but until your situation becomes dire, your baby will be just fine. Now you need to fight, so gather up your information and make a case for yourself. I will help you in whatever way I can. Please let me know if I can do anything. I'm going to look for those links right now.

Stef

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 118
   Posted 8/14/2010 12:21 PM (GMT -7)   
First of all thank you all so much for all the advice and support. I called my GI but since it's a Saturday another dr was on call. He told me to go to the ER and said if my dr is refusing remicade he cannot approve it either . Needless to say I'm so frustrated. And on top of it all my own dr is on vacation starting Monday. I will increase my pred and see what that does. Will def call my OB on monday and see if she can do anything. Once again thank you guys so much.

Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 8/15/2010 7:27 PM (GMT -7)   
Let us know how you're doing. Try to stay calm and don't worry! :-)

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 118
   Posted 8/17/2010 6:07 PM (GMT -7)   
Ok, here is the update on my current situation with the Remicade....
 
So I called my GI on Monday, and they were still refusing me the Remicade saying that its way too late in the pregnancy!!!!!!!!!!!!!!    So frustrated, I called my OB doc and she kindly listened to my predicament and was a bit puzzled (to say the least), as to why they were refusing me, basically she said that shes pretty sure I can still get it but just to make sure... she referred me to a high-risk dr that is affiliated with their office so I go to see him tomorrow.  If he says its all right, then hopefully I'll be able to get Remicade and stop suffereing like this.  So ironic, how Im just thinking that my own GI could just make one phone call and set it up for me, but is refusing....perhaps he just hasnt had any experience with pregnant women with Crohns and Remicade, and its a liability issue....but he most certainly could have referred me elsewhere instead of straight out refusing it altogether.  Oh by the way!!!! His alternate suggestion, that instead of the Remicade, he wanted me to check in to a hospital, and they would start me on IV steroids, how about that....!!!!!!!!!!  Uggggghhhhhhhhhhhhhh........ 

inflamed
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Date Joined Nov 2005
Total Posts : 1340
   Posted 8/17/2010 7:17 PM (GMT -7)   
I'm so sorry. I'd be finding a new GI no matter what. Sounds like between the referral and your OB you should be getting relief soon. Hang in there. You shouldn't have to suffer because your GI is behind the times. That's not the doc you want to be with anyway.
Mom to two healthy Pentasa babies. 6+ years remission, woo hoo!

Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 8/18/2010 6:10 AM (GMT -7)   
I agree- time to get a new doc. He sounds like a real @$$ - just trying to cover himself legally instead of worrying about the fact that a severe flare could put you in a big mess and then you really could sue him for harm to you and your baby. The irony is unbelievable. BUT, I digress. The good news is, you have a great OB who is helping, so lets keep our fingers crossed that mat/fet spec that you are going to see will say that the remicade is ok. I just can't for the life of me understand why they'd rather admit you and give you steroids over remicade!!! That just blows my mind. Please keep us posted on how your appointment goes. I'm keeping my fingers crossed for you. Will be waiting for your update. Hope it all goes well!

Stef

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 118
   Posted 8/19/2010 8:15 PM (GMT -7)   
I went to see the specialist today, and he said that it's ok to get Remicade up to 8 weeks before the due date. So he approved it! I'm so relieved! They're setting it up for me to get real soon. However, now I'm just nervous bc I'm so deep into this flare and it's so bad that I'm worried when it's going to help and how long it's going to take to kick in...oh boy....

Stef17
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Date Joined Feb 2003
Total Posts : 1811
   Posted 8/20/2010 7:12 AM (GMT -7)   
I'm so glad to hear that you're going to get your remicade!!! That's great news. Hopefully it will kick in right away and you'll be just fine. Are you still on the higher dose of pred? Maybe you should stay on that until you get the remi- just to keep things quiet, or quieter... After you get your remi you should call your GI and tell him what an @$$ he is for letting you suffer for so long and "putting you AND your baby at risk". You've been fine enough, but his whole thing has been to cover his butt and instead he's done the opposite by denying you proper treatment.

Sorry to be so negative, I just get so frustrated when I hear about doctors who won't use common sense. ANYWAY... I'm thrilled for you! I will keep my fingers crossed that the remi kicks in right away! YAY!

Crohny93
Regular Member


Date Joined Mar 2008
Total Posts : 118
   Posted 8/22/2010 1:14 PM (GMT -7)   
I finally got the remicade today.  But since my OB is affiliated with another hospital, I went there on an outpatient basis, instead of the usual place I go to.  The people were wonderful, and the infusion only took a little over 2 hours, instead of the usual 4+ hours.  I am still taking 40 mg of pred, and its not doing much at all.  Im praying that the remi will kick in soon, for the sake of me and my baby. Thank you guys so much.  Big hugs to stef for your advice and heartfelt encouragement on my situation. 

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/23/2010 11:50 AM (GMT -7)   
Glad to hear you got the remicade!!! I've got my fingers crossed that it will kick in soon! And they got you out in 2 hours? Woo-hoo! Kudos to your OB for being on the ball. Will you be able to get another infusion before you deliver? I know the timing will be a little off since you get them 8 weeks apart, but hopefully if you need one, they'll let you have one. Keep us posted on how you're doing!!! I'm glad to help. Others helped me along the way. I'm just paying it forward.

Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 8/23/2010 1:03 PM (GMT -7)   
Awesome, Angie.
Hope you'll get relief ASAP!
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