Topic of the discussion
Posted on 8/25/18 4:21 AM
I was diagnosed with lupus (SLE) about 20 years ago and am 37. My husband and I have been trying to conceive for the past 3.5 years. We got pregnant a little over a year ago but had a missed miscarriage at about 7 weeks. Since the first pregnancy took so long, rather than trying again naturally we underwent fertility treatment and were good candidates for IUI, which was successful on our second round. However, earlier this week we, again, lost the pregnancy through missed miscarriage at about 10 weeks
I know lupus carries a higher risk of miscarriage, combined with my “advanced maternal age” - but I’d love to hear from the ladies with lupus out there. Did you have a miscarriage, if so, more than one? Did you eventually find success? If so, was it natural or with some form of treatment? What issues did you experience?
We are going to keep trying - I’m nowhere done with this fight yet. But I’m hoping to hear some stories about light at the other end of the tunnel.
Beginning of the discussion - 8/27/18Lupus and pregnancy: Share your experience! https://www.carenity.us/forum/lupus/living-with-lupus/lupus-and-pregnancymiscarriage-391
Posted on 8/27/18 8:34 PM
Hi Lauren. I will give you some insight from a couple of women I have met over the years with LUPUS and who were going through with pregnancy or had children. I myself cannot give a perspective personally because I have not become pregnant since being diagnosed with LUPUS nor can I say I have actually tried.
I have known one lady who was diagnosed with lupus (systemic) and gave birth twice. She was told to stop taking her lupus medication while trying to get pregnany - that was for her first. However, that made her flare up very bad, so she got back on the medication. From my understanding, it is the flares that can result in miscarriages or affect a successful pregnancy.
I have another friend who had, I believe, two miscarriages before finally giving birth. She was around 34 when she gave birth. She too said she was told by her doctor that flare ups are the major reason of affecting a successful birth. He wanted her to continue with medication (not sure actual medication or dosage), and to take proactive measures to prevent flare-ups.
I know they each sought out a doctor who helped with pregnancies who also worked with their specialist.
I hope this helps some. Feel free to ask me questions and I will do my best to reach out to my friends or answer them if I know. Wish you all the best.
Posted on 6/2/20 6:14 PM
Hi everyone, I know this is an old discussion, but my partner and I are thinking about starting a family together since we feel ready and I'd be interested to hear other peoples' experiences. Has anything changed or progressed since this was posted? We're really at the "just thinking about it stages" and I'm worried that my lupus will make it impossible for us.
I'd love any insights from you all
Posted on 6/2/20 6:29 PM
@jasmine1092 Hello jasmine1092, thank you for reviving this discussion!
Hello everyone, how are you doing today? How was your experience getting and being pregnant? Did you experience any complications due to your lupus? Or on the contrary, did it not have any impact at all on your pregnancy? Feel free to share your story here, we're all here to help one another!
Posted on 6/11/20 6:09 AM
Hi everyone, I got pregnant last yr but lost d pregnancy at 19 wks, tho it wasn't confirmed to be lupus flare or something. D baby strangulated himself with umbilical chord. It's over a yr now that have been trying but nothing yet. But I keep hoping and believing that it will happen again.
Posted on 7/3/20 6:03 PM
@Follytee I'm sorry to hear about your miscarriage. Don't worry, don't stress, it will happen for you, I know it.
@jasmine1092 I had my first before I was diagnosed and everything went relatively well. With my second I had my diagnosis, and I had asked my doctor before getting pregnant about the risks and things and he advised me to wait until my lupus had been under control or in remission for at least six months before trying. Lupus pregnancies are usually classed "high risk" because of the risk of preeclampsia. I had lots of follow-up and more appointsments than with my first as they wanted to make sure that everything went well, and it did. I hope this helps you!
Wishing you both the best!
Posted on 10/26/20 7:25 PM
I was diagnosed with lupus 6 years ago. All 3 of my pregnancies have been high risk due to the lupus literally at multiple drs every other day the whole pregnancy in n out of hospitals getting nst's but all 3 of my girls are healthy so far thank god had them all natural. With no ivf no nothing after each pregnancy the drs have mentioned getting my tubes tied because of the lupus and the risks. When the time is right the baby will come just dont stress and let it happen🙏❤ sending prayers your way
Posted on 2/3/21 9:58 PM
Have you seen our latest article? In it we discuss the potential link between female hormones and lupus, which contraceptive methods are most suited to lupus patients, as well as how to best plan for pregnancy when you have lupus! Feel free to have a read here: Lupus: Contraception and planning for pregnancy
For those of you who had already been diagnosed with lupus before your pregnancy, how was your experience? Did you have any complications due to lupus? Or on the contrary, did the disease not impact your pregnancy at all?
@Destiny415 @Stepb1 @Pixiestyx @Heyzil @amyrose @Yayaya @Bijoux @cmmusiclover @Christa.J @heathermaupin0 @Taniya @Caletha39 @Sweetleaf @MarkitaGeorge @cjgertner @catspaw1955
Feel free to tell us about it here! We are here to help one another!
Posted on 2/4/21 2:41 AM
I am beyond child barely years
Posted on 3/19/21 7:11 PM
Hey guys, I want to share my experience and if it resonates with anyone I’d be happy to discuss further. I was diagnosed with Lupus at 20, I am now 32. My disease activity is mostly in my joints, I have moderate to severe arthritis with deformity(s), chronic pain, chronic fatigue, photosensitivity, urticaria, srojgens, raynauds (to give you a good picture of my disease activity). I had my first unplanned pregnancy at 29. It was very much touch and go as we had a lot of outside influences causing high stress which added to my high risk. I had the opportunity to travel to a high risk obstetrician but it was too far for me, so I met with a few doctors locally and chose the one that I felt the most comfortable with.
My pregnancy journey went quite well considering. My lupus flare actually went as close to remission as I’ve ever had during the months that I were pregnant. However my pregnancy symptoms were very active, but that’s okay. I carried to 37 weeks before I had preeclampsia. At 37 weeks I could no longer feel my baby move, so after careful monitoring I was induced to deliver. I opted in to an epidural, but after 41 hours of being induced I was beyond exhausted and we switched over to an emergency c-section. I should mention that had I known the comfort in having a cesarean I would have not tried to deliver any other way.
My son was born healthy. Throughout my pregnancy I treated my lupus strictly with prednisone for inflammation (I have never not been able to take Prednisone). I also had to maintain a comfortable level of pain medication (narcotic) because the risk of withdrawal. My baby was monitored for any transfer of medication after birth which did affect him for about 24 hours. Due to the preeclampsia and high blood pressure and edema following birth I was not able to leave the hospital for 9 days. I did experience an abscess from the cesarean as my body does not heal quickly enough being suppressed. I had to attend daily clinics for 3 weeks having the incision repacked with gauze, then every other day for another 3 weeks. This really wasn’t bad except for travelling daily while trying to heal.
Aside from the abscess, my recovery was successful. I remained fairly close to remission for months following birth which I am grateful. We are now trying to conceive a second child (3 years was the recommendation from my obstetrician). I am experiencing high disease activity, so up until this point we have not been able to successfully conceive. I can’t confirm if this is because of lupus.
I’ve always stood by the motto that motion is lotion for anyone who is affected in the joints. Having a very active toddler really keeps me on my feet and promotes my daily movement.
My heart goes out to all of you who have experienced a loss during your pregnancy. I hope it does not discourage you in any way from trying again. It is truly a blessing and despite my level of disease, I do feel like my sons presence makes me healthier even when I feel at my worst.