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Imuran & pregnancy

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Posted 10/27/2007 2:59 PM (GMT 0)
Ya...Im sick and tired of all the wishy washy answers. The wife and I made a decision yesterday. I told my doctor that he has 1 year and 1 month to get me better (by my 40th birthday) If Im still juggling meds and trying to figure out what works to get things under control, Im getting surgery. Im not going through my forty's the way my 30's went, and then I cant toss the meds and the wife and I will have our 2nd baby after the meds have left the system. I would rather wait the extra year to start a family med free than risk flipping a coin to decide weather or not its safe to conceive.
Posted 10/29/2007 8:56 PM (GMT 0)
There has been some discussion on the Crohn's board re: Remicade. I thought some of you might like to take a look at it.
https://www.healingwell.com/community/default.aspx?f=17&m=953786
Posted 10/30/2007 3:09 PM (GMT 0)
Wow! So many conflicting views! I'm currently 25 weeks pregnant and my doctor, nor my high risk OB were concerned about the fact that I'm on imuran. My high risk OB even said he has delivered about a hundred healthy babies to moms that were on imuran. My doctor even printed me off the latest studies which showed no correlation between birth defect and imuran at a low dosage. I'm currently taking 100 mg which is well below the limit (based on my weight) that some of the animal trials have been conducted. I had my big 20 week ultrasound and genetic screening done  (which tested for spinibifida, downs, ect) and all is healthy with my little girl so far. They even ruled out a cleft pallet which was one of the things that babies of women taken imuran may be at a slightly greater risk for. That scares me what you all are saying the drug company told you, but I'm assuming its because there is a liability issue there since they have not done enough studies. My pharmasist just gave me a paper that said to consult your doctor before taking it if you are pregnant (but every medicine out there says this). I'm crossing my fingers but I figure that its ultimately up to god. So far I have been flare free my entire pregnancy and I'm really hoping my daughter is a blessing in more than one way! Good luck every one :)
Posted 10/31/2007 12:23 AM (GMT 0)
Expecting226, I totally agree with you.  And I think about that drug you're referring to all the time (can't remember the name either).  Made everyone sterile I think.  And there was another one for morning sickness that caused immediate birth defects too (loritimide maybe?).  However, have you ever looked at stuff you're eating?  I did the SCD for 2 years (very successfully till it totally flopped on me) and it is AMAZING what is in our foods!  And that's just the ones that atually have the ingredients listed.  So while I am nervous about conceiving on a drug, we've all conceived on drugs, we just didn't realize it.  What will those do to our kids (and us) 30 years down the line?  What about all the pesticides on the veggies?  I saw a news spot where they tested people for different chemicals in their blood (from pollutions, etc) and everyone had at least 90 different chemicals in their bodies!

I did do a lot of reading from people who have btdt, and it seems like people are having healthy babies and nursing them on imuran and remicade.  Remicade is actually a class B drug, which is what tylenol is isn't it?  I asked my pedi about a new baby being on immunosuppressants through me and she said it shouldn't be a problem to nurse.  I 100% agree that drug free is better, but there are so many babies now that have problems that were "drug free".  With all the reading, I only came across one person who thought imuran might have been the problem.  She m/c at 5 months with her 2nd and then a year later her first child was dx with autism.  Well, it seems like these days it's like winning the lottery for your kid not to be ADHD or autistic, or some other label.

I'm definately not trying to belittle this issue by any means, but there are tons of people having babies on it, and we won't know the long term effects of just living today, let alone with the drug.  I hate that we have to trial and error to find out.  I'm glad there were people before me that figured it out, but I'm also terribly sad too. :(

Fosterdad, I think that's a terrific idea.  I just met a guy who was finishing up some remicade b/c his UC gave him a big ulcer on his leg.  He finally just had an ilieostomy (sp) and he said it was by far the best choice he's made.  At 8 weeks out he said he felt better than he had in years.

Posted 10/31/2007 1:31 PM (GMT 0)
It is going to be a very long and personal decision for me and my husband, I plan to do as much research as I can and talk to as many Doctor's as I can. Ideally, I would love to be completely med free but can't do that b/c I don't want to flare.

It is scary to me that there seems not be long term data 50-60-70 years...but it is a chance I will have to take and live with the rest of my life and my child will have to live with the rest of their life.

My one big question I am working in my mind right now is I am already on imuran which can take 3-6 mos to work and will be doing the remicade tests next week. I am doing ok right now....meaning 5-10 bm's a day (better than 20-30 and utterly miserable), not much blood and urgency (when I go, I seem to have to go a few times in a row) and semi formed stools. So it's not normal but maybe it would be better for me to just be on remicade a class B drug rather than stay on imuran a class D drug b/c I want to try to conceive next year (after I am healthy and off the pred for my kidneys). So if they are going to put me on the remicade and it works, then maybe I should just stay on that and get off the imuran???

Also, I doubt any drug company will tell you it's ok to get pregnant while on their drug, too many lawsuits.
Posted 10/31/2007 2:46 PM (GMT 0)
I think that's a great idea Beth. It sounds like the best option.
It's wierd though b/c I see so many people waiting on the remicade "test" and I got the remicade with only a simple overnight blood test (to tell my white blood count) and I have to wait for the imuran "test" to come back.
Posted 10/31/2007 3:16 PM (GMT 0)
Denise, I think the results take longer from the imuran tests (mine took 3 weeks) but for remicade, I know that it is taking about 3 weeks to get the test scheduled at my doc's office Nov 5th from my last visit........which I think they could have gotten me in much earlier, when I was there they were going to try to get me in that day (GI had me go through my primary care to get the test scheduled), however, before I was debating about wanting to go on remicade b/c I am getting better, so I did not say anything about waiting so I could give myself time to think about it.......but now I am debating staying on imuran if I go to remicade........ah the decisions!!!!

When I go for the test next week I am going to look into all the OB's there and hopefully find one that specializes in people w/UC or high risk pregnancies so I can ask.
Posted 11/1/2007 2:52 AM (GMT 0)
i don't remember ever havign a remicade test, i had an immuran test years ago, the one from CA, i can't remember the name. Anyway iw as told that you need to be on sometype of immunosuppresant, during remicade to help lessen your chances of becoming immune to the remicade.
As for the meds, here is somethign to think about about remicade, it hasn't been around that long, so while they know the effects in the short term, they don't know what that might do to kids conceived on it forty years down the road.
One of the other drugs i take is phenobarbital, which has been around for 100 years, so they pretty much know everything about it. ANyway, it's also a class "D" drug, but is necessary for me, anyway, like the others taking folic acid can help reduce the chance of side effects.
But what i was suprised to learn what that pheno was used to stop early labor for years, and still is by some older doctors, or in poorer areas. My point on that is that even though they have learned there may be some bad effects, it must not be that bad.
talking about the food and such, if you think about this too, some of you and most certaintly your parents, were carried by women who smoked and drank during pregnancy, because noone knew any better, and most everyone turned out alright. I think this might be one of those cases where too much info is a bad thing
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