RO52 in pregnancy

[Stef82]

Can anyone tell me what RO52 will mean to pregnancy? My Rheumy says I need weekly scans from week 16-28, my not very knowledgeable Obstetrician said he doesn’t even think I have Lupus (Oh great, non specialist to a difficult Illness- let’s just not take all the steroids anymore as in your under-qualified opinion I‘m fine without them) and scheduled ONE heartscan for Baby in week 22.

Im now 16 weeks, have been pushing my Rheumy to get a referral to St Thomas/London on Monday next week to see Specialist who knows about pregnancy and Lupus.

I would like to be a bit prepared as I know I’ll walk out of there with more questions than I had before.

Anyone knows anything about this? My RO/LA test is both negative but RO 52 was detected, ANA 1:2560, speckled Pattern, Diagnosed June 17, unplanned pregnancy as I came off Steroids and was supposed to have my next flare up in the very distant future, that future turned out to be one week away and I fell pregnant in that time. I blame the Steroids as they are the same as Woman take during IVF and obviously blaming my husband. Because I can.

Now back on Steroids and Hydroxychloroquine + Aspirin.

Any info is appreciated.

I’ve had to terminate my last pregnancy in 2016 at nearly 17 weeks due to Patau syndrome (Chromosome defect), the Baby wouldn’t have survived.

This Baby is very much wanted but I can’t be happy yet because i don’t know what is going to happen and if Baby is in danger.

[AgedCrone]

As you sadly had to terminate last year definitely ask your GP to refer you to a PeriNatal specialist NOW ......they know how drugs will affect your new baby & should set your mind at rest.

If GP seems reluctant....a bit of emotion is called for.....it's your child & you deserve the best care available.

Ask the help of the midwife in your practice if GP is reluctant....they are usually very helpful.

Very Good Luck

[SjogiBear]

It is essential that you are closely monitored as you have tested positive for the Ro52 antibody as this can be implicated in foetal heartblock.

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/rheumatolo...

There are lots more studies out there if you google for Ro52 and heartblock if you need to print something off and stick under your doctor's nose!

There seems to be a huge amount of ignorance out there around this subject - I only found out after the event that I should have been closely monitored and luckily my baby was OK - I was very cross as my antibody status was known before my pregnancy but communication was lacking and I had a very lazy midwife who missed most of my appointments.

Like AgedCrone has already said, you completely qualify for very close monitoring and should be getting it now as this will help to give you some peace of mind as the pregnancy progresses. You should be getting weekly foetal heart monitoring now you are 16 weeks - have you seen the information on Pregnancy from Lupus UK - it's very useful: lupusuk.org.uk/wp-content/u...

Hopefully this pregnancy will run smoothly for you - just because you have the antibody doesn't mean your baby WILL have problems and most don't. Best wishes to you xxxx

[Paul_Howard Partner LUPUS UK]

Hi Stef82 ,

This is the first time that I have heard of Ro52, if they are like other anti-Ro antibodies then they can possibly cross the placenta and be involved with neo-natal lupus syndrome and a small risk of congenital heart block.

I would encourage you to try and follow your rheumatologist's advice and err on the side of caution with weekly scans. Are you able to change obstetrician? Or perhaps your rheumatologist could speak with them about their advice?

[Stef82]

Thank you all for your input. I met on Monday with Prof Catherine Nelson-Piercy at St Thomas Hospital in London. She advised that weekly scans won’t be necessary but whenever I see a Doctor, Midwife or Obstetrician they should listen to Baby’s heart rate and it would be quiet obvious if there would be a problem. I have still a heartscan booked at Evelina Hospital at 21 weeks and growth scans at 28, 32 and 36 weeks. I actually don’t need the growth scans but hey, what do I know what happens until than so rather more scans than less.

Prof Nelson-Piercy did raise an eyebrow over the Obstetrician’s comment of me not having Lupus (I do have it) also about his letter but reassured me that I’m right to have come to a specialist who knows Pregnancy and Lupus combined.

If nothing happens to the heartbeat I won’t have to go and see her again. I feel much more like a normal pregnant women now and not like an ignored woman with lots of drugs who happens to expect a child.

I will see how it goes with the Obstetrician, I’m not scared of telling him that I don’t trust his judgement in my case but I do understand that this is all rather unusual for a normal hospital whilst St Thomas is flooded with people like myself and sadly also people in a far worse position.

I was so nervous I actually didn’t manage to take in what the difference between Anti-Ro and Anti-RO52 is but it’s more or less the same. 2% chance that Babies heart won’t work correctly, if that happens it will need a pacemaker from birth and obviously ever changing operations during its growing life to adapt the size of cables. But apart from that it could be completely fine.

There is also a 5% chance of a rash in the first 3 month of Babies life that could look strange to Doctors but it doesn’t harm Baby and will disappear by itself.

Fingers crossed!