Pregnancy w/ Lupus — The Bump
High-Risk Pregnancy

Pregnancy w/ Lupus

uknowmesaraheuknowmesarahe member
10 Comments 25 Love Its First Anniversary Name Dropper
edited April 2015 in High-Risk Pregnancy
I was diagnosed with lupus 5 years ago. I don't have any active symptoms and haven't been on medication in years but my blood work always come back positive. Well I just found out I was pregnant and now I'm so worried I'm going to have a lot of complications. Anyone with lupus that can tell me a positive story?

Re: Pregnancy w/ Lupus

  • winniesawyerwinniesawyer member
    First Comment Photogenic
    edited April 2015
    Many blessings... I have a similar auto immune disease as well as arthritis and fibromyalga with horribly active symptoms. My high risk dr has told me Pregnancy and hormone changes can actually help the symptoms. But since pregnancy also takes an extreme toll on your body u may find flare ups to be upon you. There is help though! So far I am right around 9 weeks pregnant myself and taking at least 10 prescription medications including pain management medicine and my dr is confident my baby will be healthy. There are a few meds that must be avoided but there are meds out there to help you should u find yourself in a flare up and needing help. Most of the meds are catagory C meaning they don't know if they cause birth defects or not but many women take them while pregnant with no ill effects. Make sure your normal OB knows about your lupus and they will get you together with a high risk OB. You will be doubling your trips to the dr however you get to see the baby more often! Make sure u ask if the high risk Dr you see has treated women with lupus before just to ease your mind that u are seeing someone with experience in your specific condition. I am right on track and we have even seen and heard the heart beat! the most important part is remain calm about it (even though I know it's near impossible) I hope this helps.
  • It's normal for lupus symptoms to subside during pregnancy (the exhaustion hasn't, of course), but it's also not rare for symptoms to flare up after giving birth, so talk to your rheumatologist about that. Lupus can be SO different from one patient to the next. Which meds you can take depends on which positive antibodies you have, and only a rheumatologist will check all of that.

    Heart block is one thing they look for in babies of lupus patients, but it is very rare. As PP said, your OB will refer you to a perinatologist, who will likely have higher quality ultrasound technology. I am 25 weeks with twins and so far everything looks great. The upside to high risk pregnancies is that you get to see your babies more often, as PP said. :) The most likely outcome is that your baby will be fine.
  • Thank you ladies....I've been so nervous. We hadn't told anyone about the pregnancy not even our other kids. I just wanted to get to the dr and see the baby so I new the baby was there. Now that that's past I feel relieved. This is my third pregnancy but my youngest in 9yrs now so I haven't been pregnant in a long time. It feels much different being "older" and pregnant. I didn't have lupus at the time of my other two pregnancies so things were simple back then. Now I feel like I'm constantly thinking about what and how much I'm eating, exercise, and just my health in general. I'm looking forward to all the ultrasounds I can get.  
  • Jaylin85Jaylin85 member
    100 Love Its 10 Comments First Answer Photogenic
    edited June 2015
    I have lupus and am 8w3d pregnant with my first. My husband and I have had discussions with my doctors for years about picking the best time to have a baby.

    My rheumatologist and high risk OB have both said that while arthritis symptoms typically improve during pregnancy, lupus patients tend to have more flares. However, the best predictor of how your pregnancy will go is how you were doing before you got pregnant. Since you haven't had symptoms for years and are managing well with out meds, it sounds like you have every reason to believe that your pregnancy will go just fine. Good luck!
  • I also have SLE and +SSA antigen and am 29 weeks 4 days and other than many more visits to the doctors everything is looking good. I am fairly newly diagnosed in May 2014 so I was having symptoms prior to conceiving and its just caused some days worse than others for pain but DH is awesome at helping me out. The pain could be the pregnancy or just the lupus who knows. My first I was not diagnosed with it so it feels like such a different experience. I am currently taking plaquenil and prednisone with no issues so far.  
  • @uknowmesarahe I do not a lot of knowledge in this area or any personal experience, just a little brother who was born to my step-mother who has lupus. She was diagnosed in her late 20's and had pretty severe symptoms for years before becoming pregnant with my half-brother. He was born completely healthy and full-term and is now 24. So this was 20+ years ago and I'm sure research and medical advances are light years ahead of then.
    I wish you and your baby all the health in the world. I'm high risk for a different set of reasons so I know what it's like to worry! I'm sure like all the other high-risk mama's you'll get a ton of monitoring and be followed by a perinatologist. A lot of the PP's gave good advice and anecdotes and I'm sure you're pregnancy will be monitored very closely and that may quell some of the nerves; it has for me and my situation. I'm only 15w but I go in to either my OB, perinatologist, or OB's NP every single week.
  • As my pregnancy has progressed I've been less and less worried. I need to just enjoy it as much as possibly and not let things worry me as much.
  • I have lupus and when I had my son in 2012 he was healthy and my pregnancy was really good on my body but after labor is when my body crashed ... The doctor explained that when pregnant our bodies makes its on like prednisone (steroid). I am also 10 weeks pregnant now and after delivery I will be placed on steroids and weened slowly so that the same thing doesn't happen again! Remain positive and optimistic God will protect you & the little one just watch your body and get plenty of labs done after delivery to prevent a long bad flare!
  • I was diagnosed with SLE 2 years ago, but luckily was able to get my symptoms under control fairly quickly. I'm on Plaquenil, but no other meds, and am now 5 wks pregnant. I haven't had a lupus flare in about a year, so am hoping for a healthy flare-free pregnancy and healthy baby. Good luck to all of you too!
  • I just wanted to thank the OP for posting this....
    I'm nearly 12 weeks along with my first pregnancy. I'm almost 33 and I've been living with a lupus diagnosis for about 4ish years.

    I just saw a new rheumatologist on Friday. She was fantastic, right up to the point where she wants me to begin taking Plaquenil again, which I wouldn't normally have a problem with. But I'm REALLY scared it might have an affect on the baby.

    Web MD says it shouldn't be continued even though it's low risk, my sister-in-law who's an RN says it's NOT safe. I've not been able to ask my OB... So has anyone had any problems with plaquenil during pregnancy and what was the outcome/what did they do?
  • Lurker here (TTC w Lupus).  MFM, Rhuemy & OB all told me that Plaquenil is a-ok during pregnany and breastfeeding.  I say call OB can get a confirmation she is ok. 

  • I'm now 18 weeks. I just had a fetal echo done and now I'm being seen every week to check the babies heart rate. I get nervous every time I go to the doctor. I feel like they're looking for some thing to be wrong. And maybe that's the case, so they can prevent any future problems but still make me nervous. My doctor also wants to put me on plaquenil @cinnajava. She said it was fine but I still haven't picked up my prescription. That's just another thing for me to worry about.

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