What to Expect When You’re Expecting with Rheumatoid

A number of years ago, I got on a high horse about being prepared when you’re trying to have a baby with RA.  You see, I’ve heard too many stories of women whose doctors hadn’t prepared them, didn’t support them during their flares, and they did things like stay in bed for weeks or worse yet, drop a baby (yes, that really happened!).  Here we are nearly 8 years into our website, and I know those things are still happening.  I hope they’re happening with less frequency.  Either way, here are some things you need to know.

Thinking About Conceiving in the Future:

From my own experience, my favorite rheumy who I had from day 1 closed her practice when my husband and I were ready to start trying to conceive.  This rheumy was ok with my staying on Enbrel through my pregnancy, but my new rheumy was not.  This created quite a difficult situation given that it took me 3 months to get an appointment with this new rheumy (or pretty much any new rheumy in my area).  Rule number one ought to be that you are ALWAYS having discussions with your rheumy about your meds and your future ability to have children.  Ask your rheumy for his/her thoughts on your care during pregnancy.  Does your rheumy even support you having a baby (many do NOT)?  Find this out way ahead of time.  If you don’t agree with your doc, it’s time to part ways and find a doc who is on the same page as you.  Also ask if your body is able to handle a vaginal delivery.  How does your rheumy work with your ob?  Ask for stories about what other patients have done when having children.

Conceiving

Ok, ladies!  Are you off all the meds you need to be off for the recommended periods of time?  Does your rheumy say “go for it?”  Are you and your rheumy on the same page?  If not, this could make life very difficult once you conceive.  Make sure you have support!  Could you call him/her if you start flaring?  If you have a flare, how soon could the doctor get you in for an appointment (an EXTREMELY important question to ask).  What will you do if you start to flare?  Have you looked into entering a drug study if you are staying on meds?  OTIS Studies  What can you take that will be safe for a baby if you are having problems, if anything?  If you are going the no med route, get a handicap sticker for parking if you need it.  If you don’t gt pregnant right away, will you go back on medications for a little while, then try again?  My 7+ years of experience on this site seems to indicate (no research I’ve seen to support this) that it’s harder for women to get pregnant when they’re flaring badly.  Depending on what you and your doctor decide, this might be a very difficult time for you.  If you have gone off all meds to conceive, be prepared for what may be ahead.  Prepare your family for what to expect and let them know that you will be needing a lot of help. 

Pregnancy

Many women have a lessening of symptoms during this time.  Some do not (I got mildly worse during pregnancy).  If you are feeling up to it, now is the time to get prepared for baby.  Most women flare after baby is born, so NOW is the time to put together the crib, find the right height for the changer, get a comfy nursing chair.  Also during this time, you need to prepare for the likely postpartum flare.  We had a mom on our site whose rheumy said to call if she started to flare after the birth of her baby.  She called and was told she’d have to wait nearly 3 months to get an appointment.  In the meantime, she dropped her baby (who was luckily ok).  This is NOT ok, ladies!  Given that most women flare 4-6 weeks after the birth of their little one, tell your rheumy you’d like to set up an appointment at 4, 8, and 12 weeks after the baby’s due date.  If you are doing ok, you can always cancel the appointments.  This goes the same for women who stayed on their meds.  I stayed on Enbrel and still flared. 

Start looking for a carseat.  Carseat buttons are the WORST thing ever when you are flaring.  I even saw Humira use them in an ad.  I don’t know of any great carseat buttons when babies are really little, but do investigate.  Will you need a stroller to take baby out if you flare?  What will be EASIEST on YOU?  You can go to a good baby store, tell them about your rheumatoid disease, and ask them for help determining what strollers are easiest for you to get in your car.  Ask for them to roll some out and see how well you can get them in and out of your trunk on your own.  Baby Depot inside Burlington Coat Factory did this for me.  They were awesome!

Make an appointment with your baby’s future pediatrician.  Let him/her know about any meds you are taking while pregnant or will be taking when nursing, should you choose to do so.

You also need to make those important nursing decisions.  Will you go right back on your meds and still nurse, stay off meds and nurse, nurse for a long time or just a little while, go back on meds and not nurse, or just say, “Hooray for formula?“  There is a small amount of literature out there that says breastfeeding may contribute to that flare after birth. Postpartum flare research. More research is still needed.  Some moms I have talked to have stayed off meds and nursed for a year, but have been unable to care for their babies.  Remember, to have a healthy baby, you need a healthy mommy!  Don’t forget to take care of yourself!

Prepare for the likelihood of a flare.  Do you have family who can come and help?  Can you afford to get help from a nanny?  Research your back-up plans.

Consider printing this document to help you talk to your doctor and plan:

Adobe Version (Must have Adobe Acrobat Reader):

Family Planning 2 pager

JPEG Version (2 pages):

Family Planning 2 pager Page 1

Family Planning 2 pager

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