*** This post is part of my Living with Rheumatoid Arthritis series.
What do you want to be when you grow up?
Remember that question? All grown-ups seem to ask it once a child reaches 5 or 6 years old. Do you remember how you answered it?
I do.
I always said I wanted to be a mama. I usually added a few other occupations for good measure - a teacher, a librarian, or Wonder Woman. But these were always in addition to being a mom.
I've mentioned before that in 2000
rheumatoid arthritis was rapidly taking away my energy and the ability to use my hands. I
feared how my disease would impact a pregnancy and daily life as a mom.
Well, by 2002 my energy and mobility had greatly improved thanks to
Enbrel. About this same time Joel and I decided it was time for us to add to our family (we'd been married for 5 years). At that time data on Enbrel and pregnancy was very limited so we followed my rheumatologist's advice and I went off all medication.
About 6 months later, in full flare, I was pregnant. O happy day!! Thankfully I did not have a job at this time. If I had, they would have fired me because I was sick and exhausted, and exhausted and sick, until about 12 weeks. Around that time the exhaustion lifted (though the nausea hung around for a while longer).
I jokingly tell my husband I would always feel great if I could stay 2nd trimester pregnant all the time (puking is over but I'm not as big as a barn). That may sound odd until you learn that for most women
RA goes into remission (inactive) during pregnancy!
The funny thing is that after the baby's born RA usually rears it's ugly head again. I'm no exception. 6 weeks after delivery I start feeling the old aches and pains and inflammation again.
With William (my firstborn) I again followed my rheumatologists advice and stopped nursing after 8 weeks so I could go back on Enbrel. That was one of the hardest things I've ever had to do! I did NOT want to give up nursing but what good was nursing if I could barely hold him.
We adjusted to life with a baby and about a year later decided to again add to our family. I knew this time that I could NOT care for an infant and be in a flare (the term for when the disease becomes especially active). I also knew that Enbrel leaves your body fairly quickly (because it is a live protein).
So we took a risk. I stayed on Enbrel until we knew I was pregnant. I never expected that to be a month later!! My fatigue was MUCH better this time around because I wasn't in a flare. Once again my RA went away - until 6 weeks after Ben was born. With him I managed to breastfeed until about 12 weeks before weaning and going back on Enbrel.
I repeated this story 2 more times - using Enbrel until I had a positive pregnancy test (usually by 6-8 weeks) and then enjoying remission for the remainder of the pregnancy. And 6 weeks after the baby was born I would feel my RA waking up.
With Ellie and Sam (babies 3 & 4) I managed to stay off Enbrel until they were about 12-16 weeks old. But, unlike with Will and Ben, I did NOT wean them. I continued breastfeeding AND took Enbrel.
Let me say here that this was against the official advice of my rheumatologist and the makers of Enbrel. My story is not intended to be medical advice. If you are on Enbrel and considering pregnancy/breast feeding consult your doctor for what's best for you.
My understanding is that the data indicates Enbrel in pregnancy and breastfeeding is fine but no scientific research/tests have been done to be conclusive on this.
Ellie weaned herself by 9 months so her exposure was limited. I nursed Sam until he was 13 months so his exposure was a little longer. I'll be honest that my mommy guilt sometimes kicks in and I wonder if they will pay for my decision at some point in the future. But for now they are both healthy and average kids.
So, ten years after my rheumatoid arthritis diagnosis I am living my childhood dream. I am a mama - 4 times over. I am also a home school teacher with enough books in my home to qualify me as a librarian. Now if I could just find a pair of Wonder Woman's bracelets...
Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.
Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).