Lupus and pregnancy!!

Hello guys. I have had lupus for around tbe passed 4-5 years now. I am 11 weeks pregnant and it is taking its toll as i am not on my tablets anymore. I only take hydroxycloroquine, folic acid and my vitamin tablets. Compared to 13 tablets i was taking every morning without pain relief during the day. Is any women on here who got lupus and had a baby. How was your condition during and after? I am afraid my baby will also be born with this condition. I would love to know your stories and how you cooped.

Thank you guys

18 Replies

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  • Hi Blondie,

    Great question! I wasnt diagnosed with Lupus till after both of my kids were born. I have heard that Lupus improves with pregnancy, but there is a tendency to flare after delivery (which is when my lupus activated, a couple of months post delivery). Which meds is your doctor okay with you continuing with being on while pregnant? I am sure your OB doc will keep a close eye on you : ) Which meds were you on prior to pregnancy?

    Try not to worry about your baby getting lupus. From what my doc explained to me, the chances are pretty low : ) Just imagine delivering a happy, healthy baby and I know you will!!

    Congrats on the pregnancy btw!

    Jen

  • Hello jennyall12 thank you for your reply. How did you find your pregnancys before you got diagnosed? I am only allowed to take hydroxycloroquine, folic acid, vitamine tablets and paracetamol. Prior to getting pregnant i was on hydroxycloroquine, vitamins, azathioprine, co-codamols, naproxen, lanzaprozol, cinnarizine. My specialist knows i am pregnant he knew when me and my partner was trying. I have taken sick of work this week as the pain is taking its toll im more tired than ever and the stress in work is not helping expecially with my anxiety. I have heard babies do get the condition for a few months if your lupus is active. Thank you for your congratulations i hope you are doing well and on the right medication xx

  • Hi Blondie22,

    Congratulations on your pregnancy! Is your rheumatologist aware that you are pregnant? Have you discussed your symptoms with your doctor?

    Because so many genes are involved in the development of lupus and because environmental triggers have to occur during the life of the individual to make the disease appear, it is not common for the children of people with lupus to have lupus.

    We published a guide on lupus and pregnancy which you can read here: lupusuk.org.uk/wp-content/u...

    Please keep us updated, all the best.

  • Hello chanpreet. Thank you for your reply. My rheumatologist is aware of ny pregnancy. I havent spoken to him yet about how i am feeling. I will be calling him though to get advice. Thank you so much for the guide. I will have a look at that. Thank you for your congrats ☺ i just hope it will be an easy ride xx

  • Hi, I have always been at my wellest during pregnancy due to all the hormones apparently! The Drs always joke about staying pregnant!

    I have however had a bad flare since my daughter was born 16 months ago.

    I did find my second pregnancy harder as my little boy was only 2 1/2 so the first 12 wks I was exhausted beyond belief!

    However all was ok with the pregnancies I was checked regularly as I also have antiphospholipid syndrome APS, so had to be on aspirin and daily heparin injections to thin my blood. I was also anti Ro antibody positive which in a small percentage can cause problems for the baby but they check the baby's heart and can send u for extra specialist scans, tho all was fine. They just check the baby over at birth, I had both mine at 38wks induced as they didn't want me to go any longer and also their growth had started to tail off, but born fine and healthy! Son 5lb 12 and my daughter 6lb 1.

    I think more related to the aps than the lupus tho in my case.

    If u are on the right treatment and the obs monitor u regularly all will be good .

    It's a very tiring and worrying time I know I worried about every little thing but just look after urself. I think the first 12 wks are the hardest so u are nearly thru that bit!

    Good luck with everything

  • Hello sara_a. Thank you for your reply. How are things now. I hope you are well. It is very very tireing. I am waiting for an appointment with the obstetrition. I have been referred the first week i found out but i havent heard anything yet. Think i should chase that up. It do sound like hard work i am so glad your babies are ok and born small babies ☺ i heard you tend to give birth 2 weeks before your due date. It is also hard with work as my job is stressful anyway without the hormones playing up. This week i did take a week off work but im thinking about taking more time off to make sure im out of the safety stage. You are right you do tend to worry everyday and wonder on every little shooting pain. I did have an early scan at 8 weeks due to pains but everything was ok. Thank you again xx

  • Yes they are perfectly fine! Very healthy lively little monkeys! Even tho I was positive for the anti ro antibody it didn't affect either pregnancy.

    Do u know if u have aps as well as lupus?

    Yes I'd definitely look after yourself and if u feel more time off work would be good then do what u feel is best, u and the baby are the most important thing now.

    Yeah chase the obs up x

  • Hello sara. Im not sure what aps is? I have been back im work for 2 weeks feel more tired but that is expected. Xx

  • Aps is antiphospholipid syndrome or Hughes syndrome or 'sticky blood'. Some people get lupus and aps together but obviously not everyone. It just meant I was on other meds and daily blood thinning injections throughout my pregnancy and for 3 months after too x

  • Oh ok. I get what you mean. Sorry. They have put me on asprin tablets as well. X

  • Hi, I was on methotrexate when I wanted to start a family. I had to be off it for. Year before I was allowed to try and was put on azathoprine. I took azathoprine throughout my first pregnancy. I was also positive for congenital heart block and sticky blood anti bodies.

    My first pregnancy I was well throughout but my lupus flared 12 weeks after. My second pregnancy It was the complete opposite I was ill throughout and my doctors even asked if I wanted to terminate but as soon as she was born my lupus improved.

    I have two beautiful girls. My 17 year old who was exposed to azathiroprine during pregnancy is the healthiest kid I know and would complain because she never got to miss school through illness because she was never ill. The only down side is whether she will have fertility problems later. My second child who ,I was so ill with, is now an elite gymnast and extremely healthy and fit.

    Good luck with your pregnancy, it is worrying but try and enjoy. Xx

  • Hello niccigrace.

    Thank you for your reply. How are you feeling now. Im so happy both children are healthy and doing amazing that do reasure me ☺ fingers crosses your daughter dont have fertility problems. I stopped taking my azathioprine due to the risks involved xx

  • Hi Blondie,

    I've had 2 babies with lupus. The 1st was my worst experience. Apparently pre eclampsia and lupus can mimic each other, both pregnancies resulted in preterm c-section delivery. Both at 32 weeks. Both babies are now healthy with no sign of lupus. 8 and 9 years old. So my advice, get your nursery ready ASAP. And have everything ready. See high risk OB/Gyn if possible. Make sure your rheum and OB are working together. Don't be afraid to ask for help from friends and family. Rest and reduce stress as much as possible. And pray to GOD.

    Congrats and try not to worry too much.

  • Hello luvmelon.

    I am hoping to have a natural birth. My obs and rhuemy will be both working together. I am so glad both babies are ok and have not inherited the condition that is reassuring. How are you doing now? I am back in work now but taking things easy but trying to keep active and rest my body tells me to. Thank you xx

  • I had 3 babies in 3 years with my lupus diagnosis. Things were fairly settled for me during the pregnancies and I then flared after the births however I had IV steroid boosts during labour which suppressed things for a few weeks afterwards. My babies were all low birthweight and I was very closely monitored at the hospital throughout.

    Try to enjoy your pregnancy - it's a very special time

  • Hello clareb67.

    Thank you for your reply. Im glad things went well throughout your pregnancy. How was your blood results throughout? Hope you are keeping well? Did you work throughout your pregnancies at all? Xx

  • I worked through pregnancy number one but not through the other two. My HB and WBC were low throughout - as is typical for me - to the consternation of my obstetrician but I remained active until I walked into the delivery room each time. Baby number 3 was more eventful as he was prem so I was blue-lighted to the nearest hospital with a SCBU. It transpired that I had Strep A which he acquired - it wasn't a good time but we both received the most amazing care at Plymouth's Derriford hospital. None of the children have any signs of SLE or auto-immunity.

  • It is good to hear that they havent got lupus or any signs of autoimmune. They say its not generic and have no understanding what causes it. But it would be nice to get to the bottom of it. Hope work was supportive throughout and im happy you got through them all x

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