Avoiding Birth Defects Means Talking To Your Doctor Early

Leslie Rott Health Guide
  • I saw my (new) rheumatologist for the second time, and we had the talk. 


    You know the one that I’m talking about, right?


    We had the baby talk.


    It’s a discussion that my previous rheumatologist refused to have with me.  He told me that we shouldn’t discuss it until it wasn’t hypothetical anymore.  But isn’t it not hypothetical if I’m in a relationship, which I’ve been in for almost two years, with the man that I’m pretty sure is going to become my husband?


    I guess part of it is that he’s a man.  I don’t really think he could conceptualize what it’s like to be a woman of childbearing age who wants to have children, and the importance that, that holds in my life, despite the fact that I am chronically ill.

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    Also, when I was diagnosed, I was 22 years old.  I had lost so much of my normal functioning that all I thought about was getting better.  I wasn’t thinking years ahead about my potential children.  I regret that my rheum had not been more forceful about me making medication choices based on my future fertility.  I took Methotrexate, both oral and injectable, for a period of years. 


    I didn’t think that maybe I should freeze eggs.  Although if I was going to do to that, I should have anticipated becoming chronically ill and done it before I felt like total shit.  Sorry if that comes across as overly nasty, but one of the first things that young women with cancer are told is to freeze eggs before they start treatment in the case they end up infertile as a result of treatment.  Nothing like that was ever suggested to me by anyone. 


    But as of yet, no one has told me that I have reason to believe I will be infertile, and no one has told me that I absolutely should not think about getting pregnant. 


    My new rheum, a woman, was extremely helpful in laying out the field for me in regards to getting pregnant and having a healthy pregnancy. 


    So the first thing, which I already knew, is that pregnancy is considered high risk for those of us with RA.  There is also an increased risk of premature birth.    


    The second thing is that there are certain medications which are deemed safe to be on, including Plaquenil, steroids, and Imuran.  Most everything else, including Methotrexate, Leflunomide, Sulfasalazine, and the biologics, are not safe to take during pregnancy and require a certain amount of time off of them before it is deemed safe to get pregnant.  I knew this, too.


    What I didn’t know is something I have always wondered.  I’ve been wondering what the goal of treatment is: Is it to get me as healthy as possible, only to get off meds to get pregnant?  Or is the goal to get me off meds period.


    My doctor emphasized that if you get pregnant when your disease activity is low, the pregnancy is likely to have a better outcome than if you get pregnant at a time when your disease activity is high. 


    This makes sense.  If your body is an inhospitable host for yourself, it’s probably not the best place for a baby. 


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    But it seems likely to me that if you are off of meds, your disease activity will be high.  Maybe it’s just hard for me to imagine the idea of remission. 


    My doctor also said that the way RA responds during pregnancy is consequent with the law of thirds.  33 percent of women get better during pregnancy, 33 percent get worse, and 33 percent stay the same. 


    One thing I had no clue about is that because I am positive for the anti-Ro antibody, which apparently only 0.1 to 0.5 percent of the population is (and this is something that is more likely with lupus than RA), I am more likely to have a baby with fetal heart defects.  So this is something that they will monitor very closely during pregnancy. 


    I think the big thing when it comes to getting pregnant when you have RA is planning.  Unfortunately for those of us with RA, getting pregnant is not going to be the spontaneous event that it is for many of our healthy counterparts.  But nothing worth getting in life is ever easy, right?    


    If you aren’t trying to get pregnant, or are still in the “washout” period for certain medications, which can take between months and years to get out of your system , depending on the class of drug, contraception is key to preventing accidental pregnancy, which could lead to significant birth defects. 


    The American College of Rheumatology specifically has a page on Pregnancy and Rheumatic Disease, which pretty much confirms what my new rheum told me.  It’s important to note that they emphasize that “With careful medical and obstetric management, most women with arthritis can have successful pregnancies”


    So if you have RA and desire to have a baby, take heart that it is not impossible and that other women have done it.    


    If you are interested in reading about a successful pregnancy with RA, check out the book “RA, Pregnancy, and the Path to Parenthood” by Suzie Edward May.  I and others in the RA community have written about this book.


    I, for one, am cautiously optimistic about the whole pregnancy thing and am so glad that I finally have a rheum who is willing to discuss it with me open and honestly.  

Published On: January 28, 2014