Positive for Anti-Ro

[Frazer96]

Hoping someone has been/ is going through to same thing and can offer some advice please!

Currently 16 month PP and 12 weeks pregnant with my second. About two weeks after I gave birth to my first baby, I got a rash on my knees.
Went to a pharmacy and they couldn’t give me anything as I was breastfeeding, after nine months of breastfeeding I went to the GP and got prescribed many creams, and the rash had spread to the tops of my feet hands and elbows, after many many blood tests and appointments (as the creams didn’t do anything) about a month ago I got a phone call from the GP saying they think it’s autoimmune and I’ve tested positive for the Anti-Ro antibody and it could be potentially dangerous to the baby I’m carrying. She referred me to obstetrics and that was it, no more tests offered to see what autoimmune disease it could be.

I had my booking appointment for this pregnancy and my booking bloods showed that my white blood cells were really low and pretty much everything like platelets ect had decreased since my blood test with the GP the week prior, I’ve still had no follow up from these results, not sure if I’m supposed to or not?

I was supposed to have a phone call with Obstetrics this morning but I missed the call, they didn’t leave a voicemail or try and call back. I finally got through to the right department and they’ve put me on the next available appointment which isn’t until the 9th of September.

I feel like I’m going out of my mind with so many questions going through my head. It’s been a month since I’ve been told I’ve got this antibody, but not been told what it is or how it could affect me, or if I passed it to my first baby.
Just that it could be potentially quite dangerous for the baby I’m carrying and I feel like they’re just “okay good luck” sort of thing..

I think they’ve referred me to another consultant anyway after my booking appointment as I had a very big bleed and retained placenta after I gave birth, and I mentioned to them about the anti body but they just said that’s to do with another department not them.

Thanks if you’ve got this far! Any help is appreciated ☺️

I have this as I have Sjögrens Syndrome. I was closely monitored during both pregnancies by the Fetal Medicine team, with lots of additional scans and thorough checks on the hearts, but both my children are fine. My 10 year old was premature for non linked reasons and my 9 year old was full term. I already knew before getting pregnant about this so flagged it up straight away with midwife. She wasn't aware of it but referred me to a consultant immediately.

@warnc007 thanks for the reply!

I don’t suppose you remember how quickly you were monitored?
The strange thing is I have no other symptoms of any autoimmune disease, which is what’s confusing - It was just the rash, which has disappeared since being pregnant!
I feel like it would make me feel better if I got an actual diagnosis of something, I’d then be able to do a bit of research on it I guess.

Hi, how frequent were scans and heart checks?

OP, I'm anti ro positive. It doesn't necessarily mean you have autoimmune disease. I also have 1:160 ana test, but tested negative on all markers for autoimmune. You need to test for each disease but don't know if it's possible during pregnancy. I only tested because I had a few MCs last year and had joint pain, but they found nothing, they said I could get in future but for now positive anti ro means extra heart check in week 20, echocardiogram, as it's mildly correlated with avb, heart block. I am confused as well, as I was expecting more frequent tests but apparently it's very hard to detect heart block, as it can develop within 12 hours, likelihood is only 1% though among anti ro positive people, so it's low risk.
I'm not doing anything until 16 weeks when I see my consultant and 20 weeks echocardiogram, so we are on the same boat

Hi OP! This was my experience with anti-ro. I have it through lupus and knew about it before getting pregnant so it was monitored closely.

The main danger of anti-ro is that it's one of the few antibodies that can pass through the placenta and it could attack the AV node (electrical signal node) in the developing baby's heart. This creates varying degrees of heart block which means the heart beats too slowly. In worst cases, the baby may need a pacemaker before they turn 1. The chances are about 5% so really not that high, but in pregnancy terms, high enough for them to keep an eye on it.

The risk is highest between weeks 16-24. After that, the heart has sufficiently matured enough that it's no longer susceptible to the antibody. All they can do is just keep an eye on it so you should be getting weekly or bi-weekly scans during that phase which specifically looks at the heartbeat and electrical signals from the baby's heart. Please talk to your hospital about this. It's quite rare and not all hospitals or doctors are aware of the issue. You may need to be referred to a hospital with a fetal cardiology unit for high risk pregnancies.

If all goes well, then you don't need to worry after 24 weeks. That was the case with us and they did monitor DD's heart for a few days after birth but said there was no issues. Regarding your first child, if they've always been healthy then you don't need to worry too much. To be safe, you can get them an appointment for potential heart block to rule it out.

Hope this helps and you are able to advocate for yourself. Now you know exactly what sort of treatment is required you have to request this from your obgyn or hospital. You can also push for a referral to rheumatology because they will be more familiar with anti-ro pregnancies. There isn't much they can do during the pregnancy to prevent the antibody from causing damage, although some doctors feel that taking anti-rheumatic drugs like hydroxycholoroquine or steroids may have a marginally beneficial effect. I took HCQ throughout pregnancy and it's totally safe.

OP I saw you asked about the frequency. That also depends on the titre (level) of antibodies. For people who were borderline positive, they may be fine with a single scan around 20 weeks. I had a strong titre (around 1:350 I think) so they did weekly monitoring.

Just to clarify with an PP's post, the ana titre is different to the anti-ro titre (anti ro is only one of many different ana antibodies). I had an ana titre of 1:5000 and an anti-ro titre of 1:350 which is considered high.

That's so interesting. In my rheumatology tests, it only says 1:160 ana and anti ro positive (no level). 1:160 is considered borderline I think? Is smaller better or worse? So confusing

@Fluffybutterfly Thank you for the detailed response, some really really helpful information in there so thank you!

I’ve got a referral for rheumatology, but it’s been about a month and half since the referral and still no appointment, the GP advised they’ve got a 6 month waitlist at the minute!

My 16 month old is healthy, the only thing that confused me was the GP said “this won’t affect the child you have now” but I’m wondering how she knew this?
I looked at some of the symptoms of Lupus as I saw Anti-Ro was common in Lupus diagnoses, and saw about the butterfly rash on the cheeks of the face - which my daughter gets quite frequently and no creams seem to do anything for it, it comes and goes fairly quickly. But just seeing the likeness did get me a bit worried!

Thanks again for your reply ☺️

@Lemonbalm8
Thanks for the reply,

Interesting to know it doesn’t necessarily mean you’ve got an autoimmune disease, that would’ve been helpful if the GP had mentioned that🤦🏼‍♀️

After she told me I tested positive I just assumed I’d get more tests, but it’s just been radio silence!

Nice to know there’s other people in the same situation (albeit it not a great situation to be in!) makes me feel better! ☺️

Hi there, I have just come across your post and I am sorry for such a delay in you posting and me writing. I am actually a child that was born with a second degree heart block due my mums anti RO antibodies, 31 years ago there wasn’t as much known about it, they think she either has Sjorgens Syndrome or Lupus.

It can pose a risk during pregnancy, I was speaking with my cardiologist today and he said while albeit serious, it’s usually a rare complication of carrying this antibody while pregnant.

I was one of the unfortunate babies born with this condition. I won’t delve into my health issues, I don’t want to upset you or anything, and I know I’m on the other side of the story, I have just turned 31 years old, and I required a permanent pacemaker at 19 years old, but I’m still here making the most of life. Sorry for the rant, just wanted to give another side, I would also be happy to answer any questions you might have at all, all the best :-)