Autoimmune : Sjogrens/lupus

laxdixdar · July 2015

Hi ladies...

Just a quick background. I've had Hashimotos for what seems forever. After 5 yrs of fertility issues and treatment for my pcos I ended up pregnant in November 14. I miscarried at 11 wks in Jan.... fast Fw And at the end of march I ended up in the hospital with severe joint pain in every joint in my body. I couldn't move, hands down worse pain of my life. The hospital chalked it up to the flu, which I had no symptoms of. I left the hospital and quickly noticed I had signs of reynauds.

Fast forward again I'm pregnant as of April! Due to the reynauds they did my ANA and titer which came back positive with a higher titer. With further labs I've found out I am def SSA and SSB positive and they highly suspect I have lupus although I am not currently diagnosed. I meet with my MFM Friday for answers and treatment plans... but I'm horribly scared.

I'm now 17wks pregnant and overwhelmed by what this could mean to my daughter. I've researched a lot, but the vast amounts of different information is overwhelming and I'm full of what ifs. I know for sure we will be doing the fetal echocardiogram. I think possibly lovenox. And honestly I'm not sure what she has in mind. I'm just horrified that I'm 17 wks and just starting treatment. I've read about the large particles in the amniotic fluid and that has me on edge. Any experience with Sjogrens,lupus? Anyone start treatment a little later with luck?

Any experience and/or advice is much appreciated.

bsckgb7 · July 2015

I have a Lupus and am I am TTC. You mentioned Sjogrens at the end. Do you have Lupus, Sjogrens & Raynauds? Or are they trying to determine if it's EITHER Sjogrens or Lupus?

Have they diagnosed a clotting disorder? The Lovenox would typically be used with a clotting disorder like Anti-Phospholipid Syndrome (it's not just standard for Lupus patients). You will have lots more ultrasounds and monitoring with MFM and I've heard their ultrasounds are even better! FX everything goes well tomorrow.

laxdixdar · July 2015

I already go to the MFM for the Hashimotos and loss history.... I've just never had to deal with this. I had no idea I had any autoimmune diseases besides thyroid disease until this pregnancy. I figured something was going on when the reynauds and joint pains started, but not this. I have just gotten all the labs back and will meet with her tomorrow and probably move on with finding a rheumy. Right now I'm not diagnosed at all. This is all very new, but due to my symptoms and labs she finds it likely that I have lupus and sjogrens.

Right now all I know is what she briefly mentioned on the phone and Google. Even as a nurse the labs are hard to interpret and figure how they correlate with each other.

cmerribury · July 2015

I had my ANA run after my second miscarriage in February. It came back high and homogeneous, and so I've been referred to a Rheumatologist to see if it's Lupus (which is what they suspect). That appointment isn't until September, but I'm currently (just shy of) 5 weeks pregnant again. My OB put me on a daily baby aspirin just in case there whatever I have has any clotting as a side effect, since it's safe this early in pregnancy. I could be wrong, since I'm still not diagnosed, but I don't believe they treat Sjorgen's or Lupus unless you're having a flare (which is what your hospital stay sounds like it may have been). They typically treat the milder symptoms when you're not in flare (like joint pain with NSAID's) and then do something more proactive when you're in flare. Hang in there, I hope all goes well with the Rheumatologist!

laxdixdar · August 2015

I see the rheumatologist this Friday. The MFM told me nothing besides of course the risk for heart block and fetal death. She said the amniotic fluid thing was false, even though I've read it several places. I've calmed down a lot though and am ready to get another professional opinion on my plan of care.

ktob3 · August 2015

I'm a little late to respond on here but I have lupus, anti phospholipids, sjogrens, and some other diseases. If you get diagnosed it definitely puts you in the high risk category but remember that for a lot of people, the pregnancy hormones have a protective effect and calm the lupus. Two people in my lupus group recently had very successful pregnancies (both with ssa/ssb) so whenever I start worrying, I try to think of that.

Good luck to you all!

laxdixdar · August 2015

@ktob3 Thanks for the response. We hit a few other speed bumps, but for the most part I've been able to calm myself and enjoy my pregnancy. I didn't get anything beneficial from the rheumatologist. He said to come see him after my pregnancy, not to breastfeed, and that my DH and I really need to be careful to prevent future pregnancy.

That being said we have our first fetal echocardiogram this Tuesday and I have high hopes that all will continue to go well. Just keeping my faith strong and not stressing until there is reason to.

blakegracie · August 2015

I have ssa antibodies but not enough symptoms to diagnose me with lupus at this point. However I am considered high risk and this is my 3rd pregnancy which surprised us. I didn't know about these antibodies in my previous pregnancies and had 2 healthy term babies. They put me on baby aspirin and have told me all the cautions which have scared me such as clotting disorder and preeclampsia. I'm 16 weeks and cannot wait for it to be over!!! I'm nervous about being induced since I've only heard horror stories

cmerribury · August 2015

@laxdixdar just curious, why no breastfeeding?

cdhartman2 · August 2015

Hello,

I have 6 autoimmune disease, four of which I found out about the week before I found out I was pregnant. Thankfully, I go to an amazing holistic doctor who has helped many people with this issue. He explained that pregnancy can actually calm autoimmunity during the pregnancy, but afterwards it can spike so watch out after you give birth. My doctor has me on several herbal medications that are still safe for baby and on a strict grain free dairy free diet that had helped a ton. I really recommend seeing a holistic dr!

laxdixdar · August 2015

@cmerribury I honestly have no idea. I mentioned it to my MFM and she said she would look into it because she had never heard of that, but she trust this particular rheumy.

cmerribury · August 2015

@laxdixdar OK, if you find out, and are comfortable with it, please share. I'd like to know if it's something I should talk to my rheumatologist about. I hope things are getting better for you!

Jaylin85 · August 2015

I'm a little late to this thread, but I'm 20 weeks pregnant with my first and I have Lupus as well. The ssa/ssb antibodies are more common with Sjogren's so I'm not as familiar with that. But, they will do repeat fetal echocardiograms during the pregnancy to monitor you; especially with the ssa/ssb. Your rheumatologist will probably start you on Plaquenil to attempt to prevent a flare during pregnancy and they'll treat you with corticosteroids if you do flare. Most lupus patients just need the baby aspirin during pregnancy; so you may not need the Lovenox. I've talked to a few rheumatologists about breastfeeding. All have said that so long as you don't flare after you give birth (common about 2 to 3 weeks after delivery) and end up on medications that are harmful to the baby, then you should be able to breastfeed just fine. Good luck! Let us know how it goes.

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