Mothers with Lupus

ATTENTION:

Calling all mothers who have Lupus!!

I was scrolling through the webinars for the SLE Foundation and came across this:

(http://lupusny.peachnewmedia.com/store/streaming/seminar-launch.php?key=EHATzPzuChW%2BLGgd4v22Put%2B%2FGu4vhSiUbFXlAPMzQ8%3D)

I know I’ve been on a bit of a binge recently with women who are mothers and have been diagnosed with Lupus (before pregnancy and after) but this topic is particularly fascinating to me. Having children isn’t in my immediate future, but questions about the reproducing process have been coming up lately.
That being said, I have some questions for you all. I’ll do a follow up (if there is interest) with some answers I receive. For your answers, email me (private) or you can post in the comment section (public), or you don’t have to answer at all. You can also select a few of the questions to answer.

**This will be helpful to all the hopeful mommies out there.

Did your doctor go over different methods instead of pregnancy? (Adoption, surrogate?)

Were you worried about giving your child Lupus?

Was it hard to get pregnant? OR Did you adopt? OR Did you do a surrogate?

If you used a surrogate, which process did you use? Did you use one of your eggs?

Was pregnancy difficult?

Were there any complications?

How were your Lupus symptoms during your pregnancy?

Since having your baby, how has your Lupus been with stress?

Thank you all so much! Again, you don’t have to answer, and if you do, please don’t feel obligated to send specific information.

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16 thoughts on “Mothers with Lupus

  1. leah says:

    I was diagnosed and told I should not have anymore kids all in the same month. Well God knew better and I got pregnant 2 mths after being told not to. (Surprise) my pregnancy was very boring. No problems, its was perfect. I was also 35 with thrombsipina. I was really scared though about my bany contracting Lupus. But the way I was explained the baby get it but it was rare. Of course she did not have it. Yeah!! If you do get pregnant you will most likely be seeing a high risk doc. Good luck with everything.

  2. Carolyn Yound says:

    I always worried about my Daughter getting Lupus. After I gave birth my Lupus flared up extensively. I had a miscarriage before the birth of my daughter and I had no problems getting pregnant again. My pregnancy was normal but I had to leave my Daughter in the hospital because of infection . my stress level at that time was significant because I was driving twice a day to feed her. My Mother helped me out too and I thank god for having family support I am please to announce that she has no signs of Lupus ‘ She gets herself tested and she 22 yrs old now. My Father had Lupus Discoid, My sister and I both have SLE

  3. Wendy Ragone says:

    I will be happy to give you input on my Journey with Lupus…too much to write but you can contact me via Facebook or Email Granyluvsmad@gmail.com. Wendy❤️

  4. Ladonna Jarrett says:

    I am 30 years old with two beautiful little girl. I wasn’t diagnosed with Sle lupus until after i had my first daughter.during my first pregnancy i experienced alot swelling in my feet which at most time feels like pins and needles, aching joints and other pregnancy symptoms. When i mentioned some of the pains i was feeling my doctor would say it was because i was pregnant and working. After my first daughter was born, i was still have aches and pains, my right hand was swollen and hurt. My doctor ran test to rule out rheumatoid arthritis and when that was ruled out, i was referred to my rheumatologist. After my rheumatologist ran more test they confirmed i had Sle lupus. Before i found out i was pregnant again i use to have flares and then the flares would just subside. During my second pregnancy i was high risk for the last 3 months my clacium levels were high and it put alot of pressure on my kidneys. My second daughter was born two weeks early. The doctors thought she would have been a very small baby because of my lupus but she was born 7lbs 15ounces. My lupus symptoms was more after my second child. I was put on high dose of prednisone to help with my kidneys and now i am on a drug called myfortic which helps with my kidneys.because im on so much meds i choose to tigh my tubes after my 6 weeks appointment. Having two kids and living with lupus can be very hard and stressful at times but i try find ways to help with dealing with my stress cause when i get really stress i have flares. If you plan on having kids and you have lupus just make sure you have doctors who will listen to you and can give you the right information you need. Even though its more risky to have kids when you have lupus, the outcome doesn’t have to be a bad outcome. Good luck to all.

    • Priscilla says:

      How did u react to Prednisone? Did you put on weight or have other side effects?

      • Ladonna Jarrett says:

        I gain weight when i was on the prednisone. I also notice a changes in my mood. I was on 50mg which at the time was very high dose. I eventually when down to 5mg.Now i am off them because i finally convince my doctor i was okay without it noW, but i will be put back on them if thw situation calls for it later on.

  5. Jennifer says:

    I was told that I more than likely couldn’t have children & that I shouldn’t because it would be very dangerous. I was also told that if I was going to have children anyway, I needed to do it as early as possible. My Doctor was not wrong. I almost didn’t make through either of my pregnancies. They were very difficult. I honestly don’t remember a lot of the first one. They were both planned C-sections at 37 weeks as it was not safe for me to go into labor naturally or to have a vaginal birth. After my second pregnancy my doctors pressured a tubal & I agreed when the second was almost as difficult as the first. It was a horrible process, but worth every minute!

  6. Angela Marie Morrison says:

    Hi! I was diagnosed with lupus, celiac disease and hypothyroid at 39, but was sick my whole life it seems and surely had lupus as a child. I don’t know if this would have changed my decision to have children had I known. However, by the age if 29, I had three children. I had extremely difficult pregnancies and suffered 2 miscarriages as well. I bleed during my first pregnancy and ended up having an emergency c- section. I suffered terrible rashes while pregnant and no one could figure out what was causing it. Extreme exhaustion both during and after the pregnancies was only the beginning. After the pregnancies, I started becoming more and more ill and it took 10 years for doctors to finally figure out that lupus was the cause of serious migraines, joint, neck, back pain, heart arrhythmia’s, pleurisy, pericarditis, and a myriad of other issues. I firmly believe the stress of the pregnancies on my body made my lupus much more active. My youngest, a daughter was diagnosed with lupus in middle school. She is now 23 and has the blood clotting disorder associated with Lupus, antiphospholipid syndrome and should not have children. Would I have made the decision not to have had my children had I known I had lupus? I honestly don’t know. However, because I didn’t know, I am blessed with three beautiful children and I wouldn’t trade that for better health at this point. I am sad my daughter has to deal with lupus. But she is a beautiful, strong young woman and has a positive attitude. She does not plan on attempting a pregnancy as it would be very dangerous for her and she worries that her child could have lupus as well. She plans on adopting some day. I hope this is helpful to the ladies out there.

  7. Fran Burow says:

    Hello!!! I was initially diagnosed when I was 9 in 1989 with ITP. After two years of of steroids I went into remission until I was 18. I had a blood clot in my kidney and was diagnosed with APS and Lupus Nephritis. I have been on steroids and chemo. I was told I probably would not get pregnant. I did at 29 and have a 4 year old. I was on a blood thinners when I was pregnant due to my history of clots. I have been in remission since 2002. Pregnancy did not affect my lupus. My son is healthy. I remain very positive about my disease. There are so many people I have seen and met that have it worse off then me. I consider myself very lucky. Advice I would give never give up on being a mom it’s the best gift. The only thing is if it compromises your health you have to do what’s best medically for your body.

  8. Ines Bizilj says:

    I’d love to tell my story via email… I need your email address! 😉

  9. Verónica says:

    I have a 20yo son. I’ve had lupus for 21½ years and I have been diagnosed for 20 years. So, when I had my son I didn’t know I had lupus, but the pregnancies of my two sons (they are five years apart) were very different. Also, I had two miscarriagesin those 5 years. Having said that, I’m answering this questions:

    Was pregnancy difficult? Yes, it was. I had pain in my bones and it was evenndifficult to lay down in bed. I was tired all the time.(I wasn’t taking any medication for lupus)

    Were there any complications? No, there were’t. Luckily, I just had the pain buy my son was born normal and I was out of the hospital less than 24hra latter.

    How were your Lupus symptoms during your pregnancy? A lot of pain. I felt my bones cracking all the time.

    Since having your baby, how has your Lupus been with stress? I was in the hospital every single year after my son was born.I got separates when mybson was 7. Still, I managed to work and study full time. However, my kidneys got involved in 1999, and I had citoxon treatment. Had my 2nd kidney biopsy on 2008, and the 3rd one on 2010. I’ve been on dialysis for 3 years now, and still work part time and I will start graduate school in the fall.

    I think I have learn to manage and accept my lupus very well. I try not to stress myself, and I rest when I need to rest. Oh! And I stop caring about what other think amd that sure has helped me to stay stressfree. 🙂

  10. Melissa Levy says:

    I have Mixed Connective Tissue Disease (SLE and Reynauds). I have four kids! The third pregnancy I suffered from Hyperomesis. The other pregnancies weren’t as complicated. On a whole I felt pretty well in terms of the SLE and joint pain! After my pregnancies, I felt tired and a little worn down. I was able to nurse and each one I nursed for over a year. I hope that I could help.

  11. slewithspd says:

    Did your doctor go over different methods instead of pregnancy? (Adoption, surrogate?)
    No. I had a high risk pregnancy for unrelated reasons, so my baby was watched carefully. I started out with Sjogrens Syndrome, and have had it since I was in about 4th grade- although I was not officially diagnosed until after the birth of my first son. He was born 2 months early, and my hair started falling out in chunks so they ran labs. I had many of the qualifiers for Lupus, but not all, so was not diagnosed with Lupus SLE at that time. After my 3rd child was born, 5 years later, I was diagnosed with Lupus SLE. (I presented with sun allergy, 6 new food allergies, swollen lymph nodes and more fatigue than usual) After I was diagnosed with SS, they carefully monitored my second 2 babies for heart block bc of my SSA/SSB antibodies.

    Were you worried about giving your child Lupus?
    Yes. I still worry about it. ESP my daughter. She has a milk allergy like me, hypermobility like me and a positive ANA like me. My rheumatologist tells me to not worry and that the ANA could mean nothing. So I just pray for her!

    Was it hard to get pregnant? OR Did you adopt? OR Did you do a surrogate?
    I got pregnant within the first month after getting off the pill with two children and within the second month with one. Not an issue at all.

    If you used a surrogate, which process did you use? Did you use one of your eggs?
    N/A

    Was pregnancy difficult? Were there any complications?
    Yes. With #1 I had ICP, cholestasis of pregnancy, rare liver disease that is cured by delivery of the child. Liver counts for ICP are between 200-400…mine were 1500. So I was a bizarrely bad case. I was hospitalized in such severe agony I was itching so deepy they kept me highly medicated on IV Benadryl just to get through the day. I also had steroids in case my son was born early, which he was born the morning I hit 33 weeks, after a day of trying to stop labor. With my second, I had major contractions throughout, and third i delivered early due to low amniotic fluid. None had heart block although I was checked weekly for this via sonogram or fetal monitoring. Perfect babies. 😊

    How were your Lupus symptoms during your pregnancy?
    My autoimmune symptoms were greatly reduced during pregnancy, then I had a major flare a few months after each delivery. (Enough to bring on Lupus full fledged)

    Since having your baby, how has your Lupus been with stress?
    Not good. I’m exhausted and have a hard time but that’s not necessarily due to my children- who are AWESOME. (Cleaning up after them, yes, that’s exhausting, lol) I’m tired bc I’m in pain and Lupus/Sjogrens is so hard on me, and I have a lot of house to keep clean- and that’s hard. Also a special needs kiddo who is so cool- but everything added up can be tiring. My advice is to take naps when you can! 😊 I have a precious family who loves me, so it’s all worth it! Feel free to email me if you have more questions.

  12. slewithspd says:

    Oh and I forgot, my negative EX rheumatologist kept telling me to stop having kids after my first, but I ignored her bc I knew we wanted 3. She was adamant that I get my tubes tied. So rude and overly opinionated! (Bc I’m on methotrexate) Yeesh though, let a girl finish her family planning first. That’s the most important thing to me. I can deal with anything for a few years for my kids.

  13. slewithspd says:

    Did your doctor go over different methods instead of pregnancy? (Adoption, surrogate?)
    No. I had a high risk pregnancy for unrelated reasons, so my baby was watched carefully. I started out with Sjogrens Syndrome, and have had it since I was in about 4th grade- although I was not officially diagnosed until after the birth of my first son. He was born 2 months early, and my hair started falling out in chunks so they ran labs. I had many of the qualifiers for Lupus, but not all, so was not diagnosed with Lupus SLE at that time. After my 3rd child was born, 5 years later, I was diagnosed with Lupus SLE. (I presented with sun allergy, 6 new food allergies, swollen lymph nodes and more fatigue than usual) After I was diagnosed with SS, they carefully monitored my second 2 babies for heart block bc of my SSA/SSB antibodies.

    Were you worried about giving your child Lupus?
    Yes. I still worry about it. ESP my daughter. She has a milk allergy like me, hypermobility like me and a positive ANA like me. My rheumatologist tells me to not worry and that the ANA could mean nothing. So I just pray for her!

    Was it hard to get pregnant? OR Did you adopt? OR Did you do a surrogate?
    I got pregnant within the first month after getting off the pill with two children and within the second month with one. Not an issue at all.

    If you used a surrogate, which process did you use? Did you use one of your eggs?
    N/A

    Was pregnancy difficult? Were there any complications?
    Yes. With #1 I had ICP, cholestasis of pregnancy, rare liver disease that is cured by delivery of the child. Liver counts for ICP are between 200-400…mine were 1500. So I was a bizarrely bad case. I was hospitalized in such severe agony I was itching so deepy they kept me highly medicated on IV Benadryl just to get through the day. I also had steroids in case my son was born early, which he was born the morning I hit 33 weeks, after a day of trying to stop labor. With my second, I had major contractions throughout, and third i delivered early due to low amniotic fluid. None had heart block although I was checked weekly for this via sonogram or fetal monitoring. Perfect babies. 😊

    How were your Lupus symptoms during your pregnancy?
    My autoimmune symptoms were greatly reduced during pregnancy, then I had a major flare a few months after each delivery. (Enough to bring on Lupus full fledged)

    Since having your baby, how has your Lupus been with stress?
    Not good. I’m exhausted and have a hard time but that’s not necessarily due to my children- who are AWESOME. (Cleaning up after them, yes, that’s exhausting, lol) I’m tired bc I’m in pain and Lupus/Sjogrens is so hard on me, and I have a lot of house to keep clean- and that’s hard. Also a special needs kiddo who is so cool- but everything added up can be tiring. My advice is to take naps when you can! 😊 I have a precious family who loves me, so it’s all worth it! Feel free to email me if you have more questions.

  14. carie prospal says:

    I had a 3 year old when I got pregnant with my second. It seems that my second pregnancy triggered something, I became instantly sick…as in 3 days after conception I was hospitalized for 3 weeks till we found out that I was pregnant and I hadn’t lost the baby. By the second trimester all symptoms totally disappeared and I spent 6 months in love with being a mom and pregnant…so on and so on…symptoms of lupus and sjogrens didn’t really hit me for about 6 months after…but when they came back they hit me like I ran into a brick wall…the fatigue was so bad I was using anything I could get my hands on to stay awake…red bull, monster, no doze, vivran…etc…then another 3 months later the joint pain kicked in…just before this I had gotten married. For 3 years my test results came back to show nothing wrong. I saw so many doctors I couldn’t even begin to count. One night I got so sick and spiked a fever and my hubby took me to the er thinking my appendix…wrong, pregnant…may be losing it to early to tell…turns out that ended up being three days after conception…same sequence of events happen only I stayed sick linger into the pregnancy and the only issues I dealt with the first 6 months was fatigue and lots of joint pain in my hands and feet…about a year after my 3rd I was finally diagnosed but the docs have all confirmed that it probably came on during my second pregnancy…

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