Miscarriage/ Infertility and Sjogrens??

[pmod2014]

Hello,
This is my first post on here, and I apologise in advance if there have been similar posts before.
I am just wondering if anyone knows if SJS impacts fertility, or causes miscarriage? I have read all the medical info etc, but am especially interested in hearing from other ladies with personal experience of any of this.

Briefly, the reason for my question is that I have been trying to conceive for 3 years, and just had a miscarriage at 7 weeks. Now I know miscarriage is sadly very common, but no one here (where I live- Ireland) can tell me whether my sjogrens has impacted on this or not, and I'm finding it very frustrating. In particular, I would like to know if there are preventative measures I could take, if I got pregnant again, to prevent another loss. When I ask my doctors, they just dont know, and I am left with a sickening feeling of another inevitable loss. They wont investigate miscarriage until 2 or more losses, but I'd really like to avoid another one- or at least give myself the best possible chance- if at all possible.

Some more info about me in case it helps- I am 33 and was diagnosed with sjogrens about 8 years ago. I am positive for both SSA and SSB, have very high rheumatoid factor and positive ANA. It mainly affects all of my joints and causes extreme fatigue, as well as the other lovely sjs symptoms- dry eyes and mouth of course! I was taking immuno-suppressants until we started trying to conceive (plaquenil did not agree with me) but since then, I have been going on courses of steroids when I need them.

Thanks in advance for any help/advice you can offer.

[anita]

Hello and welcome,

I'm sorry this has happened and understand that you'd like to make sure you've done everything so it doesn't happen again. 

The only suggestion I have is to be tested for aCl (antiCardiolipins).  It's a simple blood test.  The only reason I bring it up is due to your other labs for definite AI disease processes.  Antiphospholipid syndrome is an autoimmune disease that causes a clotting disorder.  The COMMON symptoms are of course clotting events (strokes, TIA's, PE, DVT, etc) but the other main symptom of this is miscarriages.

Like I said, it's just a simple blood test and the condition is treatable, so maybe if this is a factor you can do something to help keep it from occurring again.

[Molivier]

When I found out I was pregnant in July of 2011, my doctor had me meet with a maternal fetal medicine doctor. I remember being 6 weeks pregnant and hearing the doctor explain all my risks. He said there was a heighten risk of miscarriage, but the most critical time was 13-30 weeks when fetal heart block was most common. It was terrifying, but I had a healthy baby girl and ended up having to get induced at 39 weeks, just for my health.

[pmod2014]

Thanks for both of your answers, I really appreciate your advice.

Anita, I will certainly ask the dr about this blood test. Its crazy to think that something so simple could be so helpful and would be great if it was indeed the case!

Molivier,  were you on any medication at the time you were pregnant? Did the fetal doctor recommend you do/take anything while pregnant? Its interesting that you were told there was a heightened risk of miscarriage, because I cant find anyone to help/advise me about this. When I went to the hospital with bleeding at 6weeks 4 days, and told them about the sjogrens etc, they told me not to worry and just go home and relax! Obviously that didn't work out well for me this time.  They do seem to be aware of the risk of heart block later on, but I have to get that far first. Congratulations on your successful pregnancy, hoping and praying that this will be the case for me next time.

[lolo1979]

I was in a similar position when trying for my second child. Had an early miscarriage at 6 weeks, and was lucky enough that my ob did a miscarriage workup. Glad she did, because that is how my positive ANA was revealed.

On my next try, she put me on progesterone from the time I got a positive pregnancy test. I took that till the first trimester was over. She also had me take baby aspirin for the whole pregnancy, right up through delivery. I believe these two things helped me maintain the pregnancy and deliver a full term healthy boy.

I did have a subchorionic hematoma from the very start of that pregnancy, and my ob didn't think it was looking very good. She told me to restrict my activity and exercise and be easy on myself. The problem resolved around 17 weeks I think, thankfully.

The only other piece of advice is to keep your vitamin d level up. I read somewhere that they think vitamin d might help buffer some of the risk for heart block that comes with the ssa antibody. I will see if I can find the link and post it for you.

[Molivier]

I was only on Plaquenil at the time of my pregnancy, but I actually went in to remission after becoming pregnant and by 12 weeks I was not taking any medication. I had weekly ultrasounds from 4 weeks until they induced me at 39 weeks. From 20-32 weeks they also had me come in and hook me up to a fetal monitor. They were extremely cautious, but my OB was a huge advocate for me (she actually attended 4 of my ultrasounds with me, and came in on her day off to watch the birth and see me after).

They told me miscarriages is always a heightened risk with anyone with a health issue. I was only the 2nd person that they knew of with sjs and pregnant so they always tease that they were "helicopter" doctors, but wanted to ensure I had a healthy baby. My daughter did end up with a minor heart issue, peripheral pulmonary stenosis, but her cardiologist doesn't think my sjs caused it.

The only other thing I took was a prenatal, and various essential oils. I hope it all works out for you, don't loose hope. Send me a message if you need anything!

[pmod2014]

Thanks again ladies!
It is so encouraging to hear of your successful pregnancies, and I have some things to ask my doctors about now in terms of trying- like the baby aspirin or progesterone!

It was so frustrating to be told not to worry by my doctors, but when I went into the maternity hospital with the miscarriage, I had to keep explaining what sjogrens was- most of the people I met were not familiar with it, and had certainly never treated a pregnant person with it before! Not very reassuring!!
I am worried this will happen again next time I am pregnant, but your advice and experiences make me feel a little happier.