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Sjögren’s Syndrome During Pregnancy and Breastfeeding

Depositphotos_4780731_sSjögren’s syndrome is a common inflammatory autoimmune disorder, predominantly seen in women, characterized primarily by dry eyes and dry mouth, although it can affect a wide range of other organs and organ systems.  In Sjögren’s, the immune system attacks a variety of different lubricating glands, and it can present as simply dryness in certain areas, joint pain and fatigue, or in serious cases, debilitating disease.  Here we take a look at some specific considerations involving women who are pregnant or looking to become pregnant.

What are some considerations for planning to become pregnant if I have Sjögren’s?

Most otherwise healthy women progress normally through their pregnancy without many complications, and there is relatively little you will need to change before conceiving.  The main issues involve stopping certain powerful medications that may affect the fetus while in the uterus, such as steroids and immunomodulators.  However, as always, you should consult with your internist, ob/gyn and rheumatologist before attempting to become pregnant, to ensure that there are no special considerations that apply specifically to you.

Likewise, common medications prescribed for Sjögren’s may need to be avoided if you are planning to breastfeed, as they may enter the breast milk and cause complications for the baby.  And you will want to update your physician if you or your baby develops any new or concerning symptoms, during both pregnancy and lactation.  There is a website, Breastfeedingmaterials.com, dedicated to breastfeeding questions with decent information on breastfeeding with Sjögren’s, including several citations from experts in the field and suggestions for further reading.

In addition, you should ask your doctor to screen you for certain antibodies, particularly antiphospholipid antibodies, lupus anticoagulent and anti-SSA/RO, which could impact the outcome of your pregnancy. The number of women or newborns who actually experience problems is still relatively low.  But the presence of this antibody may significantly increase the risk of recurrent miscarriage, congenital heart block in the fetus (which can be treated if detected early enough), neonatal lupus, and much more rarely, stillbirth.  The presence of other autoimmune diseases may very well raise these chances.

How might the symptoms change while I’m pregnant?

It’s difficult to say, as the presentation of the disease can be quite varied to begin with, and every woman’s body responds somewhat differently to the pregnant state.  With the removal of certain medications there may a greater risk for flares, although pregnancy also often has the opposite effect on women with autoimmune conditions.  After pregnancy, it is sometimes found that Sjögren’s symptoms will flare, though there is no set time period within which this generally happens.

Are there any studies that show a common time period in the post-partum weeks for the condition to normalize back to my pre-pregnancy condition symptoms?

Again, because of the considerable variability in disease severity and presentation, in conjunction with individual effects of pregnancy, it is difficult to estimate exactly when this will take place.  While some sources do cite the phenomenon as occurring at some point in the post-partum period, no studies were found that specifically investigated it.  Because many autoimmune diseases tend to flare in the post-partum period, this may also make differentiating a flare from a return to baseline more difficult, especially if there was a decrease in symptoms while pregnant.

Is it possible to develop or be diagnosed with Sjögren’s during pregnancy, and how would I know whether the symptoms are just from the pregnancy or because of Sjögren’s?

Yes, as with most diseases, it is certainly possible to develop Sjögren’s while pregnant, which may be owing to the fluctuation in hormones, the increased inflammation that results from discontinuing certain meds, or just bad timing.  Women who are pregnant tend to monitor their health very closely, which may also lead to a diagnosis that might have otherwise gone unnoticed.

In pregnancy, it can sometimes be difficult to discern whether symptomatology is being caused by an actual disorder, or whether symptoms are merely a reflection of the changes a body goes through during this time.  However, Sjögren’s Syndrome does have some very specific symptoms in dry eyes and mouth, which might be experienced while pregnant, but are still somewhat indicative of possible Sjögren’s.  The best way to tell (which is still not 100%) is by visiting your doctor and letting him or her determine exactly what’s going on, through history, physical and lab testing.

Questions for your doctor:

  • Can you recommend a good source of information on pregnancy and breastfeeding with Sjögren’s?
  • Which tests do you need to run before I become pregnant?  Which antibody tests specifically?
  • Am I at a higher risk than the average woman with Sjögren’s?  If yes, can you explain why?
  • Is there anything I can do to help minimize the risks associated with Sjögren’s and pregnancy?
  • What are the specific medications that I must avoid while pregnant or nursing?
  • Do you expect my symptoms to change once pregnant, and if so, how?  When will I return to baseline after delivery?

 

About the Author
Dr. Rothbard is a professional medical writer and consultant based in New York City, specializing in medical education articles targeted at a variety of audiences, from children through clinicians.  After leaving medicine, he worked as a biology and medical science educator for several years, before deciding to pursue writing full-time.  He may be reached at [email protected].

 

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Comments

  1. I am 7 weeks pregnant and having a flare in my symptoms. Prior to pregnancy I treated my symptoms with AIP diet, supplements, LDN, and short bursts of prednisone if necessary. However, I stopped the LDN after I found out I was pregnant and I’ve reintroduced nightshades and eggs into my diet. My issues with Sjogrens have always been gland swelling. I was hoping that pregnancy would put me into a “remission” but that doesn’t seem to be the case. My parotid glans have gotten a bit larger and tingly these past 7 weeks and I’m concerned that by the end of this pregnancy I’m going to have a face that resembles a toad. I plan on seeing my Rheumy and I have an appt with my ENT, but I would prefer to not be on medication. Any thoughts or advice?

    • Hi Rachel, have you recieved any response on this?Iam in th same boat as yours and very much concerned.

      Thanks,
      Roopa

  2. Hey all reading this post,

    Not to discern anyone but I was diagnosed with sjögrens when I 29 weeks pregnant with my first son. I had developed a severe discoid lupus rash which prompted me to go to a dermatologist who gave me ny diagnosis via skin biopsy. I had a flare up within a month after having him and things slowly died down. Fast forward 18 months later and I become pregnant with my 2nd son. I did not know I was pregnant until I was almost finished with my first trimester!!! At 19 weeks we discovered my baby had developed complete heart block. I was completely asymptomatic which is super scary. Also I was being monitored the perinatalogist that delivered my first born. Just giving a heads up to anyone that finds themselves pregnant with sjögrens. Thanks to google I found a great group of moms who have children with complete heart block. I would love to help anyone to the best of my ability!!

  3. Hi all,
    Wow, I’m so glad to find people talking about this now. All other posts I come across seem years old. I JUST found out I’m pregnant and, of course, I’m worried as I was diagnosed with Sjogren’s about a year or so ago. Would any of you mind sharing I guess how the process started with you? DId your regular obgyn seem knowledgable about Sjogren’s?

    Thanks!

  4. Thanks in support of sharing such a good thinking,
    article is pleasant, thats why i have read it completely

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