Trying for a baby: Hi, I was diagnosed with Lupus... - LUPUS UK

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Trying for a baby

PaulaMM profile image
4 Replies

Hi,

I was diagnosed with Lupus in 2006 when I was 15, at this time I was told that I also have Hughes Syndrome which mean my blood clots. Since being diagnosed I have had 2 full knee replacements which have been the best thing I've ever done. I have been very lucky and never experienced a flare up since I was diagnosed.

I have recently began trying for a baby with my fiance and have spoken to all my specialists and have had my medication changed. As you can imagine I have had to go through a lot to get to this point and have been forward that miscarriage is a high risk for me.

I am hoping that some of you have been through the experience of having a baby with Lupus and be able to share your experience with me, doctors have told me what to expect but having real life stories is much better.

Many thanks

xx

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PaulaMM profile image
PaulaMM
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4 Replies
SmilingToots profile image
SmilingToots

Go for it! I have Lupus and a healthy 18 month girl. I weaned off steriods and hydrocoxychloroquine but stayed on azothioprine before trying to get pregnant. Docs said I'd find it difficult to get pregnant, would have a nightmare pregnancy, would need a c section and baby may not be healthy .. All this assuming I didn't have a miscarriage! Well NOT SO! Pregnant first time, amazing pregnancy .. No lupus symptoms or even swollen ankles or heartburn, gave birth naturally and baby healthy!! And all this at age 42yrs old! Remember docs have to tell you the negatives .. That's all. I had scans every fortnight and towards the end every week so I think I was lucky to see my baby so often! My specialist did insist on inducing at 37 weeks as she didn't want to push my luck :) good luck with it and it'll be the best thing you have ever done. Keep positive and keep smiling, Carol :)

AlisonM profile image
AlisonM

I weaned off steroids & anti infkammatories before conceiving, had to take blood thining injections daily throughout & after pregnancy. Induced @ 39 weeks, normal delivery. Had frequent scans too. Very active 18 month son, only fine side is I'm coming out of a minor flare (fatigue & joint pain) & it's 200 times harder when you don't just have you to worry about!! Good luck x

baba profile image
baba

Make sure you are being treated for the Hughes which can cause big problems in pregnancy. Best wishes.

red_yetti profile image
red_yetti

Get your gp to refer you to pregnancy Lupus clinic at Louise coote lupus unit, St Thomas Hosp London. I have lupus,3 blood clotting probs (aps/Hughes, lupus anticoag, factor v Leiden), underactive thyroid. Don't stop hydroxychloroquine/plaquenil as safe during pregnancy... I also started steroids along with various other meds needed. You need low dose PRSCRIBED aspirin if have Hughes, and will have clexane post delivery for a while (weeks). you will have regular ultrasounds throughout. I did have numerous medical probs and slept through a lot of pregnancy, but lupus was better during pregnancy (as it suppresses immune system). I also had extensive DVT in one leg with lots of clots (week 37) so was on clexane injections from then, and warfarin tablets post birth for life now.

BUT I do now have an amazing 3 year old daughter!!!

I hope that helps... All the best xxx

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