Diagnosed with lupus and TTC

[Claire78564]

Hi, wondering if I can get some advice from those of you who have been exposed to lupus either having it yourself or knowing another person with it. I have been ttc for a year during which time I have had 2 mc. After thr second I went to get some private investigations and I've been told they think I have lupus. I've tested positive for anti nuclear antibodies and lupus anticoagulant. I'm freaking and a d now think I will never have a child. They have prescribed me aspirin and clexane for next pregnancy but this was when they thought I just had a clotting disorder. Has anyone had lupus and gone on to have children? Could really do with some positive stories. I feel like a complete failure. Xx

Goodness, you poor thing. I have Lupus, though I was diagnosed after having my kids (that doesn't mean I developed if after children though). My dad had Lupus and I had symptoms for years, so the diagnosis made sense. I went onto have 3 kids (6 pregnancies in all).
I've had blood clots, so I injected clexane after my delivieries, not during the pregnancy. The thing is, if you do the aspirin/clexane thing in pregnancy, I believe you can't have an epidural when you deliver.

If I were in your shoes and TTC, I'd aggressively plug into rheumatology on the NHS. Lupus is complex and beyond most GPs expertise. GPs can guide you and prescribe, but they must be led by rheumatology. And it's lifelong. So if you can remain private, great. But if this isn't an option, then take your results to your GP and get referred to rheumatology.

I can say that my DH is a GP and has had a few Lupus mums whom he's looked after closely during their pregnancies and they've all done well.
Good luck!

@TheVanguardSix thanks for responding. Worried no one would. To confirm, you found out you have lupus after your 6 pregnancies but had symptoms prior to the diagnosis? If you dont mind me asking, what symptoms did you have. Thing is I have no symptoms I feel fit and well so I dont k ow what to make of it. I'm hoping that the aspirin and the clexane help next time altho I really do worry I will never be a parent. Am I better off that I have conceived in the past? I just dont know.

Glad to hear that your husband has some.positive experience with other patients. I just worry I'm now someone who cant have children.

@Loti92 I'm sorry to hear that you have this problem. If you dont mind me asking what symptoms do you have and how were you diagnosed? Its encouraging to hear your pregnancies have so far been good. Can I ask what treatment you take?
I'm going to ask my gp to refer me to a rheumatologist and I pray to god I get there. I dont know if they will refer to me to this clinic prior to catching again or when I do catch. Xx