Desire to conceive... facing Humira or surgery

Hi Everyone,
This is my first post on the forum. I've been following awhile and have found it so amazing to hear people with similar struggles that I do.
I've had Pancolitis for 6 years, been in remission for 1.5 years twice during that. Prednisone always got me into a good remission, but now, my UC comes back right after tapering off pred, so I know I need to try Humira or have my Colon removed because I refuse to be dependent on Prednisone my whole life...

I got married 1.5 years ago and in the next year want to conceive. I'm so stressed out about it and just need some advice from people who know what I'm going through. I'm afraid of the Humira side effects and how it will effect pregnancy and breastfeeding. I'd rather get my colon out for good and be done with it, but have read that the scar tissue reduces your fertility. I'd go for the laproscopic surgery. Does anyone know if it has the same effects on fertility? I don't really know how to get all the info I need to make a good decision... Any advice or wisdom from experience would be much appreciated!

Also, I just feel like the ups and downs of this disease are keeping in depression. My mom wants me to go on meds for it, but I've heard they don't work... anyone with advice on that would be great too.

Emma

24 year old female
-Diagnosed with UC in 2004 -Colazal (had no results with Colazal)
-Hospitalized with sever Pancolitis is 2005 (Prednisone, 6mp)
-Remission
-2006 quit 6mp b/c it made my hair fall out
-flare in 2008 (Prednisone)
-Remission
-Asacol
-Flare fall 2009 to present (tried Prednisone, but bleeding continued after tapering)
-Current meds Asacol (12, 400mg pills a day) and Probiotics

That's a good idea! Will do. Anyone else got advice with Humira and pregnancy. I figure I should at least try it before jumping to surgery, it just sounds scary...
Emma

Emma, I'm just curious why you are thinking of Humira before Remicade? I don't have any advice about pregnancy with UC. I was diagnosed after my daughter was born. Good luck to you! ;o)

Thanks everyone. To answer your question, the reason I would consider Humira first is b/c my GI said they are both used for UC and I can get Humira on patient assistance for free b/c of my income level. Also, I would rather do an injection myself than have to go into get infusions. One other factor is that I heard you can't go off and on Remicade b/c you build up antibodies, but with Humira that is less common. I guess I assumed they worked in a similar way so it would be fine.

I was on Humira for almost 2 years, and during that time had discussed pregnancy with my docs because I had assumed I would continue on it and we are discussing having a 3rd child. My GI told me they would want have wanted me to stay on it, though since I was getting it through a trial, I would have to have it approved first since it is NOT currently approved for treatment of UC. I would make sure it is approved for you before starting on it, because my GI also told me that while they initially thought that people were less likely to build antibodies to Humira, as opposed to Remicade, they are finding that not to be the case. They are finding that patients do in fact build antibodies to the Humira more or less as readily as they do to Remicade, and they advised me that if I were to go off of it, I would likely not be able to use it again in the future. However, I built antibodies to it while on it, and thus I am now on Remicade. (btw, I was diagnosed with UC AFTER the birth of my second child, so I have not gone through a pregnancy on any UC meds at this point)

Some other things to think about-if you are concerned about the risks of Humira with pregnancy (which are basically the same as the risks of Remicade), Humira is a pretty static dosage. You can change to weekly rather than bi-weekly, but otherwise, there is not much you can do as far as dosing. So while you could try and time infusions of Remicade so that you could potentially avoid having them for the majority of your third trimester (when researchers say the medication passes through the placenta), you would be unable to do that kind of dosage with Humira.

That said, Humira worked very very well for me while it worked, and I had really no side effects from using it. The GI felt it was much better to stay on the med during pregnancy rather than risk a flare, and they have told me they would want me to stay on Remicade during pregnancy as well. My OB/GYN also told me they have had a number of patients on Remicade during pregnancy and those have been successful pregnancies.

Good luck with your decision, and good luck trying to have a baby!

Try Humira or remicade. I don't know much about Humira, but I have heard so many success stories about remicade. Of course, I think I may be experiencing the start of a flare right now and I'm on remicade and 14 weeks pregnant, but from what I have read 1/3 of women get worse, 1/3 stay the same, and 1/3 improve their symptoms during pregnancy. The one thing I have heard is the last thing you want to do is get pregnant during a flare. Often the flare will continue throughout the pregnancy if you start with one.
My GI doc has said he has seen many patients who have had babies while on remicade, and they have all been very healthy. He did say he doesn't want me to have a dose past 30 weeks, which particularly worries me. I could go 12 weeks without an infusion, and I usually get one every 8 weeks. I don't know whether women usually flare because of this increased interval or not . .. I guess time will tell.

Any surgery or serious illness, and some meds, can affect your fertitlty.
I hadnt' had surgery yet when i got pregnant, and i was fine, i was in the category that does great through pregnancy, like a normal person!
But right after he was born i went into a horrible flare and stayed there for 2 years until surgery.
It may be harder to concieve, but its soooo hard to have a child in a flare.