Pregnant and have Lupus

Hi everyone im currently 21 weeks pregnant and just after other peoples experiences of how their Lupus was after the baby was born?

This is not meant to offend anyone but since I have become pregnant I feel great had none of my usual symptoms and feel 'cured'. I saw the Lupus specialist and she said pregnancy can mask symptoms and that they are likely to return once the baby is here and they cant say if things will be the same, better or worse. Deep down I knew this is what would happen but I am actually gutted to hear it out loud and just wondered if anyone continued to feel alot better after their pregnancy. Its so upsetting that for the first time in 4 years I am pain free and that the reality is ill be back like I was when baby is here. Im actually not in a rush for baby to be born....how crazy is that? Obviously Im excited about having baby but its purely down to the fact of how im feeling why im not in a rush to have him or her....hope that makes sense and I know thats a very selfish thing to think.

Also my 20 week scan is due next week and im worried what effects if any the lupus will have had on the baby? The doctors have said my medication is ok to take in pregnancy and they dont think there will be any problems but its something that's in the back of my mind. Im lucky that my anti-body tests seem to be neg at the moment so the doctors have said that the baby isnt at risk of having a heart block. Is there anything else that Lupus can do to a baby? Im just trying to prepare myself as best I can for different outcomes.

Thanks in advance

Lulu xxx

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  • Hi, my son is 7 months old & I still feel pretty good!! Mainly baby tired not lupus tired- he likes a 5am start

  • Hi Lulu, I'm 34 weeks and feel fab too, although am starting to get aches etc. but no more than usual in pregnancy. I've seen a Rheumy who specialises in Lupus pregnancy and certain antibodies can affect the babies head circumference for up to a year after birth. It's quite a new finding apparently. The team measure my baby's head regularly as will they after the baby's born to check for sudden changes. They've also written the possibility in my notes as a couple of people have been accused of shaken baby syndrome as it's similar symptoms.xx

  • Hi, first of all congratulations to you all! I now have an 18 month old and although I was only actually diagnosed with lupus 5 weeks ago, I have been seeing a specialist for a few years to get to the bottom of things so was 'suffering' while I was pregnant. Although, like you, I wasn't really suffering all that much. I had a wonderful pregnancy and felt better than I had in years. That was however until I developed an 'unknown' infection (which we now know was most likely down to SLE) and had my son 6 weeks early all very dramatically! That's not meant to scare you by the way, everybody is different and the fact that you know you have lupus already is a big help because I'm sure they're keeping a close eye on you. After pregnancy I felt fine up until earlier when my so was turning 12 months and since then my lupus seems to have got worse and worse. Now, I have my own theory...when my son was more dependable on me (i.e. Waking in the night, needing to be fed every few hours, spending all day with him) I think I was just in 'mummy mode' and wasn't letting anything else bother me so the lupus was in the back if my mind. However, since I started back working things have gone downhill for me...he doesn't depend on me as much as he has become such an Independent little man so I think psychologically that has affected me in some way. I know I'm rambling but it's difficult to explain! Like I said, you know about your condition so should be getting the support you need and again, everyone is different so who knows...providing a new life may kick your body into gear lol. Best of luck x

  • Congratulations on your pregnancy!! I found out I was pregnant 8 months after a serious flare which had resulted in being in hospital for a while so I was really nervous. I have to say, we we're looked after so well by the hospital, having check ups and scans every four weeks, I couldn't have asked for better care. My lupus seemed to have got much better- I felt wonderful and I was reassured regarding the birth by the consultant although was advised to seek support after the birth as a flare was likely up to 40 days after. We were also warned that the baby could arrive early but I would be induced at 38 weeks.

    I went into labour at 35 weeks, the last few weeks weren't amazing as I developed gestational diabetes, obstretic cholestasis and also pre eclampsia. I was admitted into hospital in the early stages of labour to be monitored due to being high risk and our son was born three days later. He is as healthy as any other child his age, has shown no health problems at all. He was 6lbs born but they think it's cause of the steroids I was taking! I worried so much about being ill afterwards but it never happened and I remain stable today! He is now 10 months old and all is well. The only criticism I have is that when in hospital we had to tell my story over and over again- people didn't seem to have read the notes and when in labour it got a bit 'messy' in terms of what pain relief etc to have, so my advise is to get a birth plan in place and make sure you know what you want! I did not think he would come early (still in denial I had lupus!) so did not have one. I had a follow up appt after his birth with the specialist who confirmed that the latter problems I experienced in pregnancy we're more than likely due to lupus so please watch out for any signs or symptoms of not feeling well in your third trimester. Also please do not hesitate to call the hospital if you're not sure about anything.

    It's wonderful being a mummy and please don't worry about afterwards, I think I spent too much time doing that and not enjoying out quality time as much as I could or should have done! X

  • Thank you for all the lovely helpful replies. Its good to hear other ladies have felt better in pregnancy and continue to do so for abit afterwards. Did any of you breast feed? I'm hoping to this time in a hope it might help make me feel better for longer? I have two other children tho so we will see lol. With my first I didn't have any auto-immune problems with my 2nd I'd just been diagnosed with graves disease and had started with lupus symptoms but not diagnosed. His pregnancy I felt really Ill throughout. This time lupus wise I'm great but thyroid wise its totally wonky.

    I was told premature birth was a risk last time so that's something I'm worried about this time. If I didn't feel right I wouldn't know if you ring the midwife or lupus team? I know that sounds silly.

    I'll keep a positive attitude that things will be better afterwards. Before I fell pregnant my lupus would go one week feeling OK, second week symptoms worsening then last two weeks of monthly cycle feeling really Ill with joint pains and other symptoms etc every month

    Xxx

  • Many congrats to you, I had my little boy 4 months ago, I felt great when I got pregnant, I got to 24 weeks and was diagnosed with cholestasis which is a rare itching disorder which also affects the liver, I ended up with very high bilirubin levels and my bile levels were over 330 apparently highest the hospital had ever seen, my son was born at 32 weeks weighing 4lb 4oz which I know early labour is a high risk in lupus anyway but with the cholestasis on top even higher, he was kept in scbu for over 3 weeks and now is doing really well, I had a massive flare up around 2 months but could be linked to stress just keep an eye as when I have a flare up my hair tends to fall out in clumps, make sure u h e a Rhemy appointment booked for after the birth but u probably will be closely monitors anyway very best of luck to you keep us posted xxx

  • Many congratulations. My son is now 23 and I was diagnosed with lupus 3 months before I fell pregnant!!! I too, was very well during my pregnancy and for 8 months later. Enjoy your pregnancy and your new baby when the time comes.

  • The only problem i had (that i thought was odd and not just normal pregnancy/birth complications) was i gained a dress size within a week, lots of swelling after i had him and iv found it really hard to shift. Othe than that i don't think i know anything more than what's already been said. Plus i don't wanna scare you, my problems went unnoticed because i was undiagnosed so they were in no way prepared for the storm that was coming. I hope you have a good doctor and midwife ^.^ wishing you luck and hope your well x

  • Congratulations! I am 42yrs old with SLE and decided to make a baby! She was born 6 months ago. Had a wee flare during pregnancy so back on steriods 6 months into pregnancy. Had wonderful pregnancy ..... No swollen ankles, heartburn ..... Better than my 'normal' friends! They treated me as very high risk and said I'd have a c section ..... However I had birth all natural. Wen baby 5 months a flare up started .... Swollen joints, fatigue and scabby nose and luckily baby sleeps 12 hours every night. Best thing I have ever done. Please do not expect the worst .... Keep your positive mindset and enjoy! X.