I took one shot of Enbrel, and then made the conscious decision not to go back on it.
There is a part of me that believes that because I was taking my Enbrel for at least 2 weeks while pregnant, that I may have compromised my immune system so much that I contracted an infection that made me so sick, my body had to choose between getting better or protecting the embryo - which ultimately led to the miscarriage.
So I've been off all my meds since I took the shot at the end of July. And I'm paying for it - so much so that prednisone isn't really helping all that much. I just went back to work this past week (I'm a science professor) and started my own doctoral classes back up, and I can feel the RA creeping into my back and neck, where it has never bothered me before.
And what worries me the most is that by not managing my disease, I'm just setting myself up to have problems conceiving again - it took us 9 months the first time, mostly because I was taking an NSAID that was messing with my ovulation. But my doctor has pointed out that some people have issues if their RA is not managed - which at the moment, mine is not. And who really wants to have sex when in this much pain?
My mother taught me that life is not fair, but this just plain sucks. Is it so much to ask for this one thing? We've waited "so long" to be in a place where we felt comfortable bringing a child into this world, and now I have to work so hard for it.
I'm so very sorry to hear that you are struggling so much, Heather. The issue of how many meds to be on while trying to get pregnant (and how the hell you are supposed to GET pregnant in the first place while dealing with untreated RA) is an extremely frustrating one.
ReplyDeleteTwo things:
(1) I totally understand your fears and desire to get any/all meds out of your system prior to conceiving, but I thought I would share that I stayed on Enbrel until I found out that I was pregnant with my son. So he got probably 2 shots of Enbrel in utero. I'm not trying to tell you that you should go back on Enbrel - that's a really personal decision - but just that it CAN be ok if you do. Also, in my personal case I'm fairly certain my son never would have existed without the Enbrel because, like you said, who wants to have sex when they're in that much pain?
(2) Along those lines, have you checked out the posts I wrote about sex on my blog? (http://www.fromthispointforward.com/search/label/Sex) I did a pretty exhaustive search looking for advice for how to make sex easier while dealing with RA pain when we were trying to conceive. Maybe some of the results would be useful to you?
Hang in there! And feel free to email me if you need someone to talk to!
Mariah~
DeleteIt's so nice to have someone that understands all of this - it does help.
I did read all of your "secret" posts because at the time you were posting them, we were trying, so I waited with baited breath for you to post them! I think what you did was awesome, and some of the things have worked, and some things we don't have to worry about too much (from the sound of it, my disease is far less advanced than yours).
As for the Enbrel, what I think is a long shot (and neither of my doctors really think much of my idea), but the timing of my illness and the size of the embryo was too perfect. I think I may also be genetically predisposed to having a reduced immune system when pregnant - my mother got some kind of illness with all of her pregnancies right at the beginning, so couple that with the immune suppressing powers of Enbrel and we got deathly ill Heather.
I seem to be doing better this week, although I'm going through another round of prednisone (my doctor gave me some to "self-prescribe" when needed). And I did have an emotional set back last week when a friend of mine callously (although not intentionally) revealed she was pregnant in the middle of a normal conversation. Of course, it happened right around the time of ovulation, and I can be pushed off my cycle at the drop of a hat.
Ugh - thanks for listening. Sometimes, it's just about getting it all out.