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Pregnant and flaring- Remi next?

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Ulcerative Colitis
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Posted 12/21/2015 1:04 PM (GMT 0)
Hi all. I've written quite a lot recently as I am 13 weeks pregnant and started flaring terribly around week 6 of my pregnancy. I was only on Rowasa enemas when we found out I was expecting. We were not trying but are very excited. 3 weeks ago, after losing 5 pounds in a week, dr started me on Uceris and Lialda. I felt amazing on the Uceris!!! Better than I have in a year. On Tuesday of last week I started weaning off the Uceris (he only gave enough for 3 weeks). By Friday I felt just like I had before starting the Uceris. An all around terrible feeling, fatigue, urgency, bleeding. I tried Prednisone before too and once getting down to 10 mg on the taper, the same thing happened. All I know is I cannot physically handle flaring and being pregnant. I missed a ton of work and have to figure out the next step ASAP. My GI has talked about Remicade and I'm wondering if that is next step for us. I was diagnosed in January of this year but began having symptoms in October. Have not been able to find anything that gets a flare under control for long! Relief has only come for a few weeks at a time here and there. I'm so tired of being sick and want to be well to carry this baby to term. Any advice? Do you think Remicade is next? Should I be concerned?
Posted 12/21/2015 2:40 PM (GMT 0)
I think remicade is an excellent idea. Especially because you are pregnant and being in remission is of utmost importance. Flaring while being pregnant is not healthy. Remicade has been established as very safe for pregnancy and the scary things we hear about remicade are very rare.
I would go for it in a heartbeat it gave me my life back.
Posted 12/21/2015 7:56 PM (GMT 0)
Are you on any oral meds? Enemas alone sound like they are not enough to keep you in remission and that is why you can't get off the steroids without symptoms returning. You need a maintenance medication.
Posted 12/21/2015 9:37 PM (GMT 0)
Dr also put me on Lialda. 2.4 grams a day. Not making a difference 😔
Posted 12/21/2015 10:11 PM (GMT 0)
you should be on 4.8 grams of lialda. if not improvement begin remicade asap, its dangerous to have inflammation and especially when your pregnant
you need to be more aggressive with fighting your UC
make sure to see a high risk OB who is familiar with IBD
Posted 12/21/2015 11:49 PM (GMT 0)
When I was pregnant (just had baby in March) I was on 4.8 mg Lialda and maintenance Rowasa. I was in remission. I flared at 26 weeks. It was a wicked flare and steroids did nothing. I started remicade at 30 weeks. By the 3rd infusion I was in remission...11 days before my water broke (38 weeks exactly) I had my last loading dose. It kept me in remission for 4 months post partum when I started a very mild but very stubborn flare. Finally getting it under control at a double dose of Remicade. I am hoping to go back to the standard dose after my next couple of infusions.

My suggestion would be to DEFINITELY up your Lialda to 4.8 g - 4 pills, start the Uceris again until the Lialda gets into your system and continue nightly Rowasa. If that doesn't help try steroid enemas. Also note that Uceris should be an 8 week course. It's not like prednisone and takes more time.

If the flare still doesn't start to turn around based on the meds I would do the Remicade. It saved me. Its completely safe during pregnancy and breastfeeding. The only issue the baby will have is that he/she will not be able to have live vaccinations for the first 6 months...luckily there is only 1 - rotovirus (anti diarrhea...go figure lol). I worked with my GI, OB and high risk OB throughout to make sure all was ok. My baby boy is a beast of a child and the happiest baby. I wouldn't change anything I did.

If you have any questions or want input on anything please feel free to ask me.
Posted 12/22/2015 9:02 AM (GMT 0)
Thank y'all so much for your advice and sharing your experiences. Dr put me back on Uceris til I can see him next week (he's out of town due to holidays). I'm also hoping to talk to OB and GI dr about seeing a high risk dr. Pretty sure I am high risk! Especially since I'm flaring!
Posted 12/22/2015 6:49 PM (GMT 0)
ask the doctor to order all of the tests they order before starting remi so if he wants to start you there wont need to be any delay
(TB, CMV, hep B, Varicella titer...)
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