Friday, February 5, 2010

My story

I'm a 29 year old nearly-newlywed - and I have rheumatoid arthritis. I was diagnosed just over a year ago, only a few short months after my wedding. It's been a bumpy road over the last year, but I am finally at a point where my health is in fairly good shape and I am essentially in remission (meaning I have limited swelling, pain and fatigue). But, that remission comes at a cost. That being some serious medications.

As of 2 months ago, I was on twice weekly shots of Enbrel (25mg/shot), plus daily doses of 10 mg of Arava, 200 mg of Plaquenil, 1 mg of folic acid and 50 mg of Zoloft. And about 2 months ago, my biological clock started ticking loudly. So - at my last rheumatologist visit, after finding out my white blood cell count was in the dumps again thanks to the Arava (I was at 2.6, with a normal reading being 4.5-10!) and after talking about the possibility of pregnancy some day - we decided to stop the Arava. (Arava is known to cause birth defects in animal studies and is considered category X for pregnancy. It also stays in the system for up to 18 months, so prior planning is essential for mothers-to-be AND fathers-to-be.)

Now I'm on everything but the Arava - plus regular doses of ibuprofen (400-800mg every few hours, depending on my level of pain). And, my research about pregnancy and rheumatoid arthritis has started in earnest. So, I decided to start this blog to keep track of my ramblings, my research and possibly my first-hand experience (though that's a long way away - as we're still not 100% sure about all this).

Right now my questions are:
Is this the right time to have a child?
Will my RA limit my ability to be a hands-on mother (considering my hands don't always work right)?
If we do decide to have a baby, what medications are safe for me to stay on?
Would my pregnancy be considered high risk?

If you're a mom with rheumatoid arthritis - or are considering becoming one - I'd love to hear from you!

7 comments:

  1. Hey,

    I came over to check on your page to see if you got my mssg. about the OTIS project, which you did. :), And I saw this post. I never saw it before...weird. (My new computer is coming soon, so hopefully it is just this old, crappy computer.) Anyway, your post brought back some memories of when I had my son. I was 30 when I had him, also diagonsed with RA only a year or so earlier, but I hadn't started the big drugs yet, so I got prego pretty quickly.

    In any case, it was really difficult when he came along. I remember he went down for his nap each day at 1. I would put him down, and then have to go to bed each day at 1:30, at precisely which time my body stopped moving. My hubby got home at 4, and the baby woke at 4:30. From that point on, my husband took care of both of us. I remember a few times, the hubby came home and found me asleep on the floor next to teh crib, b/c I had only made it that far before collapsing. But keep in mind, no one had me on any biologics at that point.

    Once I began the "big drugs," things started to improve, but I never forget those days as evidence to me how bad things can get, or how much I really did achieve.

    I'm not trying to scare you. I definitely STILL think you should get pregnant, b/c I have NEVER regretted doing it to this day. BUT! Others will NOT understand how hard it is. I'm warning you right now. Only we can know how much work it really is. You will feel as overwhelmed as ANY new Mother, BUT you will have hours during the day or night when you wont' be able to move so much. I do recall I lost a lot of friends during that period, b/c I was too embarassed ot let anyone see that ALL I could do was take care of my baby and nothing else. But looking back now, I'm so proud taht I WAS able to take care of my baby despite EVERYTHING!!!

    - RA SB

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  2. My symptoms started around seven years before my diagnosis, so I had 1-2 pregnancies with early RA, but didn't start treatment until my diagnosis two years ago.

    Having children is an incredible experience. When I was in high school I swore that I'd never get married because I didn't want kids. Eventually that changed, and I have five. I highly recommend parenthood.

    You can nap with your baby. Don't try to be superwoman. You'll figure out a way to do the things that need to be done, and you'll figure out how to say "no" to the busy activities that don't really matter.

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  3. Just wanted to say hi! I'm a mom with RA. I found out I was pregnant the same week I got my RA diagnosis - yikes! My son is two now, and we are considering trying for a second baby. We are weighing the same pros and cons you are, except with the added difficulty of already having a toddler to care for. Right now, though, we are definitely leaning towards going for it. Being a mom with RA has been hard, for sure, but I wouldn't trade it for anything.

    I'd be happy to talk to you about my experiences with pregnancy and RA, mothering and RA, etc. I'll be following your blog with interest!

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  4. Oh, by the way, most RA pregnancies are not considered "high risk". You would only be considered high risk if you had other certain other AI diseases - lupus is one - or other complicating health conditions. Actually, a lot of RA patients do really well during pregnancy. I was one of the lucky ones who hit remission during my second trimester.

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  5. I started a comment here, but realized that I was writing so much that it'd become an entire essay, so I moved it over to my RA blog: http://thethousandteeth.wordpress.com/2010/03/08/having-ra-being-a-mom/

    :)

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  6. I feel like a moron for tearing up upon discovering your blog. I am 30, and I was diagnosed with Mixed Connective Tissue Disease (RA, Lupus, Polymyositis and Rynaud's), which was triggered by my pregnancy. I have been on 20 mg of methotrexate weekly for 18 months or so, and I have also been enjoying remission and good health. My husband and I are preparing for a second pregnancy.

    I am transitioning off the methotrexate and onto Plaquenil.

    I have to make it through the 4 month "detox" from the methotrexate.

    It is so comforting to know that there are other women carrying the same cross, at the risk of sounding melodramatic.

    I will pray for you and for your success on this journey. I look forward to reading your entries.

    All my best!
    KM

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I welcome your comments and experiences! If you have any questions, I will try to get back to you as soon as I can.