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What happens if I stop taking meds?

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Ulcerative Colitis
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Posted 4/20/2010 2:36 PM (GMT 0)
Hello!  I am 37 weeks pregnant and have been taking lialda for a few months.  I am pretty much in remission, i.e. I am almost "normal" thanks to the meds.  I wanna stop taking it.  I've been warned that I could have a flare especially after I give birth.  So what if I just wait until the flare occurs?  Is there a chance that I could have a worse flare if I do?  Seems like if I'm on top of it, it wouldn't make a huge difference for my body to just wait on it, and I really hate taking meds while preg/nursing.  Thanks for any advice from ANYONE who has gone off meds and had an experience after having done so.
Posted 4/20/2010 2:55 PM (GMT 0)
I was on Asacolon through my pregnancy and felt great, had no symptoms and thought I was invincible.

However, 6 weeks postpartum I started a horrible flare, no notice at all, very sudden diarreagh middle of the night- while trying to change baby’s diaper-not nice at all. I tried 4 courses of steroids, Imuran and I am finally on 6mp and in a sort of a remission…. I don’t even want to think how much worse off I could have been had I not been on Asacol already. It has taken me best parts of 8 months to start feeling even semi normal.

I would not recommend coming off the meds without your doctor’s advice, you don’t have long to go now until you give birth, why not try to keep your body in a nice stable remission and see 8 weeks after the birth how you are. I was told that you are most likely to flare 6 weeks postpartum, as your hormonal levels start returning to normal after the pregnancy…

Best of luck !!
Posted 4/20/2010 3:00 PM (GMT 0)
It's far safer for you and your baby to stay ON the meds than go off. If you choose to go off meds during your pregnancy you risk a flare. Taking that risk might mean stronger medications to get it under control. I suggest you talk with your OB/GYN and your GI before stopping your maintenance medications.

Sue
Posted 4/20/2010 3:01 PM (GMT 0)
I'm in total agreement with the above poster; do not go off of your meds without your doctor's advice. Lialda is a great maintenance medication; you feel good now because of it, so I'd stick with it. I'm sure it would be tough to have a major flare with a newborn. You also might want to discuss a plan with your doctor about after having the baby in case you do flare...prepare in advance so that's one less thing you'll have to think about while caring for a new little one. Maybe you'll want to have some rectal meds on hand, etc. Always good to have an alternative plan in your back pocket! Glad to hear that you are feeling well right now!

Posted 4/20/2010 3:33 PM (GMT 0)
I basically typed out same thing everyone else said, so I just erased it. Ditto on other posts.
Posted 4/20/2010 4:53 PM (GMT 0)
Right, I agree. If you go off the Lialda, you risk a much worse flare and you also risk that the Lialda might not work next time so you'd end up using meds more toxic to you and your baby.

Lialda is made to most dissolve in your intestines, and not further up in your system, so it's pretty safe. I was on Asacol, which is also a 5-ASA med, through my two pregnancies and through breastfeeding with no problems.
Posted 4/20/2010 5:16 PM (GMT 0)
Take it from someone who went through a really nasty flare with a newborn...you DO NOT want that to happen, and should do everything you can (which means staying on your meds) to prevent that. I didn't enjoy my son the way I would have if I hadn't been so sick, and I still am a bit bitter about that. I was so weak at one point, that I couldn't get out of a chair when I was holding him. It also really sucked to have to interrupt his nursing (well, until I lost my supply, then it was interrupting his bottle) to dash to the toilet, and wasn't fair to him. I've also heard of several stories where people were doing fine on 5ASA's, quit, flared horribly, and the 5ASA's no longer worked and they had to go on stronger meds. Just stay on them, really.

Editing to add that I re-read your post and noticed that you're "almost" in remission.  In my opinion, stopping meds now would certainly throw you back into the flare really quickly. 

 

Posted 4/20/2010 5:23 PM (GMT 0)
Although I've never been pregnant, I would say to make sure you stay on the Lialda plus have a prescription of the rectal enemas or even suppositories handy and use them for maintenance as well.

I'm assuming you've not read any of the desperate posts of those who are pregnant and flaring.....or of those who have given birth and flaring.

It must be the happy hormones talking.

quincy
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