Tuesday, March 1, 2016

My Pregnancy and Sjogrens

I didn’t have a chance to write much about my pregnancy and I wish that I had.  At the time, it seemed like things couldn’t get any busier with my constant array of medical appointments, moving, and getting ready for baby.  What I’ve come to realize is that having a baby is even busier than having three to four doctors’ appointments per week and managing a chronic health condition, but that’s a whole other discussion.   Pregnancy and autoimmune diseases are an extremely important topic especially because the majority of people who suffer from them are women.

It used to be that many women with autoimmune diseases were told to forgo pregnancy.  This is no longer true for many of us, which is a welcome change. (I do realize that getting pregnant can be a difficulty for autoimmune disease patients, but I’m going to stick with my experience with the pregnancy part for now.) With careful pre-pregnancy planning and monitoring during pregnancy, it’s possible for things to go well and to be blessed with a healthy baby.  Now of course that doesn’t mean the pregnancies are easy and without risk, but a good outcome is no longer a rarity. In fact, a study from last year, the largest of it’s kind found that pregnancy is safer for lupus patients than originally thought with a 81 percent having what is medically called an “uncomplicated pregnancy”.  Click here.

For me, pregnancy was a bit of double-edged sword.  In order to make sure my baby was healthy, I had weekly fetal echo cardiograms throughout most of the 2nd and 3rd trimester.  These were critical to determine if the baby’s heart was developing correctly and did not develop “fetal heart block”.  Heart block can be a consequence of the SSA/SSB antibodies found in some Sjogren’s and Lupus patients.   I also saw my high-risk OB quite often in addition to my regular array of autoimmune appointments including rheumatology, rheumatology infusions, and ophthalmology to name a few.  To make things a little more tricky, my OB and pediatric cardiologist  (she monitored my baby’s heart) were at least an hour away so I would wiped out by the time I got back home.

The good news was that my Sjogren’s was much better while I was pregnant.  Yes, I felt the best I had in years.  My fatigue was less intense and I had more energy.  My neurological Sjogren’s symptoms were more in check and we were able to lessen the “pregnancy safe” medical treatments I needed.   Dare I say I felt pretty normal.  And while, many pregnancy women complain about brain fog for me it was also the opposite.  I felt mentally sharp again.   I “knew” this new state was probably temporary, but I secretly hoped it would last well past my baby being born.  I imagined going back to work part-time and excelling at both home, career, and motherhood and managing my health. (While material for another post, this was definitely too ambitious).

And I am not alone in having this experience.  Some autoimmune diseases are thought to improve during pregnancy.  My doctors who are Sjogren’s experts told me there was a chance that I would feel better based on their clinical experience.  Some describe pregnancy as a natural imuno-suppressive, which can be a good thing for those of us with over-active immune systems that go around attacking the wrong things.

This raises a number of big questions, which I am not nearly smart enough to answer.  What exactly happens during pregnancy that puts some autoimmune diseases into a less or more active state?  What role do hormones play in this process? And more importantly is it possible to replicate some of this without pregnancy?  I’m hoping that some scientists and doctors might already be tackling these questions.  If you're familiar with anyone doing work here please let me know.  I do wonder whether some of the mystery around pregnancy and autoimmune conditions may be part of the the key to better treatments in the future. 

I would love to hear from other autoimmune moms who were diagnosed prior to getting pregnant. I haven't been able to find very many.  What was your experience with autoimmune disease and pregnancy?



9 comments:

  1. I just wanted to thank you for your blog post. I had three miscarriages, then two successful pregnancies, all before I was diagnosed, so I am not of help there. However, I find it fascinating and even hopeful that you did better during pregnancy. You may be on to something!

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    1. Thank you for reading and sharing your experience. It's definitely so important for those of us who are autoimmune moms whether diagnosed before or after pregnancy to connect. It's a different journey and I don't know any other moms with autoimmune disease in my community. Stay in touch.

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  2. I was diagnosed with Sjogren's Syndrome prior to getting pregnant. I was diagnosed at 33 and had my first child at 37. I'm currently 11 weeks pregnant with my second child. My first pregnancy went very well. I was monitored by a high risk OB. So far so good with this one. I definitely felt better with my first pregnancy and my Sjogren's symptoms are also better now too, but I'm pretty exhausted. It's likely because I have a toddler to take care of and can't rest as much as I'd like. Pregnancy is exhausting! I would also love to know if there's a way to replicate the positive effects of pregnancy on autoimmune diseases. It would feel like a cure! Thanks for your post!

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    1. Hello I know quite a bit about sjogrens as I am 33 and have had it since 2009 after my tonsils came out too late n life. Progesterone plays a huge role in feeling better in many cases. Estrogen before cycles make us flare. or me anyhow. I was prescribed the mini pill progesterone only pill and it made me not flare! but. my boobs hurt way worse all the time, not just before my cycle for a week or two, i have cystic boobs however that swell, so i stopped it because it was heated fluid and unbearable. I am only 5 weeks and petrified i am normally ana ssb positive on occasion ana has come back negative. this is my first I am trying to keep. Lord only knows what a ride i am in for hopefully i find good doctors.

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  3. Hi! I have Sjogrens and was diagnosed after the birth of my first child (although I reckon I had it for many years looking back!) Went on to have another baby 20 months later. So I have had 2 pregnancies, but only knew about the Sjogrens for one of them. I also was diagnosed with antiphospholipid syndrome and had to take Aspirin. During my first pregnancy I felt great and looking back I realise it is because my Sjogrens was in remission. I think that our bodies "dampen down" our immune systems to stop us rejecting the baby. During my second pregnancy I becAme very ill in the third trimester, became septic. Then I had an emergency C Section at 38 weeks as there was no fluid around the baby, then I had a bad postpartum haemorrhage and had to have a blood transfusion. The baby was quite sick too and was in NICU for 2 weeks. Thankfully she is now 5 months old and thriving. So while my sjogrens went into remission both times, I found the second pregnancy very worrying.

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  4. Hi! So glad you are posting again :) As a 33 year old, diagnosed with Sjögren last year i can relate to lots of the situations you have been describing in your posts. I have not had any pregnancy, but one year before getting my Sjögren diagnosis, i was diagnosed out of the blue with PCOS (polycystic ovarian sdr). I have also had lots of problems with reccurent labial herpes infections. So, i am sure there is a connection with a hormonal imbalance, but also with viral/bacterial infections in addition to a certain genetical predisposition. It really feels frustrating that my reumathologist doesn´t seem to care about these things. I have been reading some articles, relating some of the MALT-lymphomas (which we are at risk for) with bacterial infections, one of the most known being the MALT-lymphoma of the stomach which is being caused by the H. pylori. I feel like scientists are not trying to find the root of the problem, but simply trying to treat the effects (somehow like when you are having pneumonia, instead of getting antibiotics you would only get something to cool down your feber!).

    Greetings from Sweden!

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  5. It is great to hear people pursuing their dream and becoming successful.
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  6. Not sure what i can share.
    I have sjogrens as well, combined with other auto immunne issues.
    I have 3 children, 2 with heartblick-one is complete.
    Just fyi in my 40's ive had 2 hormonal cancers...breast and ovarian, needless to say i cannot take hormones at all apparently.
    Im still trying to find a way to feel "great" and hormones play a key role.
    Im sure it is all linked to these auto immune diseases.
    On the outside, you would never know what havoc my body has had to endure.
    As far as my heartblock children all is well and weve participated in a research registry for 18 years with Dr. JILL Buyon (head of rheumo at NYU).
    its very interesting to learn about others...keep sharing@

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