[MaryC]

Hi there,

I just wanted to find out if there was anyone out there who has any experience of anti-ro antibodies and pregnancy? or if they know someone who has had these antibodies while pregnant?
I have just been told I have them and I'm 7 weeks pregnant! (I have SLE - Lupus)

I understand how they can effect me and the baby but I just wanted to try and get some feedback from someone who has first hand experience of it, especially if the antibodies crossed the placenta!!!

Thanks,
Mary

 

[Betty M]

Hi Mary

Congratulations!! I was glad to see this news.

They have obviously told you what the risks are and presumably how rare they are - I was told only 1 in 1000 for the main congentital risk. I was checked for anti-ro a couple of times in both pregnancies (negative) and also for anti-la - I think if you have to have both there is a higher neonatal lupus risk. Despite the negative bloods they checked the babies for the possible congentital effects (negative). The babies were also checked for neonatal lupus rash again negative. I quizzed the doctors about the whole thing as I was curious as to why they checked when I didn't have any positive tests and was told abundance of caution.

They will probably keep a hawk eye on you and the baby and offer extra scans between 15 and 25 weeks. Try and get into a specialist clinic if you can - I was at a brilliant combined specialist physician-obstetric/rheumatology clinic.  The lupus puts us at higher risk of pre-eclampsia  and inter-uterine growth retardation - I had both in pregnancy 1 (neither dreadfully seriously) so I would think you will be in a high risk consultant led clinic if your experience is anything like mine. No midwifes in sight the whole time. It helped me feel much more confident about the pregnancies to be honest.

I hope everything goes really well and the anti-ro issue turns out to be a non-issue. Let me know if you want any more info on being pg with lupus !

Love
betty

 

[MaryC]

Hi Betty,

I had my scan today and baby is doing well, 7 weeks now. I was a high risk pregnancy with DD and am again with this pregnancy, my consultant is excellent. He has moved my ante natal appointment forward to this Monday coming and I will be watched like a hawk all the way through my pregnancy. I'm on my Clexane injections for my aps and will be monitored by a specialist for that, so over all I'm very luck with the team I have looking after me. The good thing is all my consultants are in the same hospital so they are very good at communicating with each other!
I think if the heart block appears then at least we will know about it and will have time to get used to the situation before the baby is born and it means the doctors will be able to act on it straight away, so whatever happens happens!! I'm not going to worry about it!!

How have you been?

Mary