Positive ANA, antiRO52 and AntiRO60 - any advice appreciated

[Ilovechips81]

Hi, I wrote a while ago as I had been told I had positive ANA but had to wait to see the Gp.

I’ve seen him today and got the following results

ANA positive 1:320 titre nuclear coarse speckled pattern

Anti RO52 positive

La negative

Sm negative

RNP negative

Jo 1 negative

Scl 70 negative

Anti RO60 positive.

He is going to refer me to a rheumatologist (at least a 3month wait). And seek advice from an obstetrician as I have been trying for a baby and had a miscarriage in April. He doesn’t think the obstetrician will see me as I haven’t had 3, so will go down the what do I need to do if I fall pregnant (will probably be some kind of steroid).

Does anyone have any experience of the results? He says it’s possible lupus or Sjorgrens, and he thinks more likely the latter. Especially with the raynauds, reaction to light and I have now developed a dry left eye (in the last two weeks - I blame the windy Devon beaches on holiday)

He has recommended not actively trying for a baby till I see the rheumatologist which at the age of 38 is very hard to hear.

Thank you

[KayHimm]

It sounds like you have an excellent doctor. Based on my experience when I was your age, you definitely should not try to get pregnant before seeing the rheumatologist. They may run more tests and those tests will be interpreted in light of wanting a safe pregnancy. The rheumatologist may want you to be under the care of a high-risk obstetrician.

Doctors do a great job of caring for pregnant women with autoimmune disease these days. So sorry about your loss with your miscarriage. If that turns out to be a problem, they can likely help you now.

Others here will share their experience and knowledge. Good you are reaching out.

Best of luck

K

[cpops]

As he said it could be linked to Lupus or some other CTD. Not sure why he advised not to try for a baby though? There is a risk of miscarriage with Antiphospholipid Syndrome but taking a low dose aspirin is usually the only treatment for that. It used to be advised not to get pregnant when you had Lupus but that is outdated thinking. Ask him to clarify his advice.

[cpops in reply to cpops]

Just to say he is right in saying that the o&g docs do not tear for APS until 3 miscarriages. However this is outrageous as the test and treatment are very inexpensive and can save a lot of suffering. Have it done privately. As I said the treatment is low dose aspirin to thin the blood.

[Ilovechips81 in reply to cpops]

I agree with you about the APS testing. I can testify how heartbreaking one miscarriage can be let alone having 3 before tests. If my mum hadn’t had lupus SLE, and told me and my brother as children about how she tried for 7years to have us, I would never have thought to ask to have any tests. At the time I think people thought it was probably chromosome related (which it may still have been). Hopefully I can get some answers soon, will do some Sjorgren research tonight.

Thank you for taking the time to reply, I do appreciate it

[KayHimm in reply to cpops]

I think the GP just wanted her to see the rheumatologist first. In addition to the miscarriage, she has anti-Ro antibodies. He is not advising against getting pregnant, just waiting for guidance.

[Ilovechips81 in reply to KayHimm]

He is also wanting to refer to the obstetrician for advice given the blood results so that, even though not necessarily being under their care, he would be able to handle my case if I were to get pregnant.

His advice was to ‘not actively try’ (he thinks I’m a planner/organiser and that adding the pressure and stress on myself is not healthy - he is correct 😀, after 2 meetings he has me sussed) and to take a more ‘if it happens it happens’ approach.

My husband is checking to see if I’m covered under his workplace medical cover (I don’t think I am) but I’m going to find out the cost to do a private referral to a rheumatologist (and their timelines for appointments). I have some money saved my grandad left me.

I’m lucky in that I don’t think I have major symptoms, and that the gp listened to my request to test for lupus after my miscarriage (my mum has SLE and I knew there can be a miscarriage link). I did make a point of thanking him - - think he’s the best gp I’ve ever seen

[Roarah]

Treatment options might be limited if you were to get pregnant now. Also tests and symptoms can be lessened or worsened during pregnancy as well. It does not mean you can not try but it might exasperate your illness but than again it might improve it, seems to be a flip of the coin.

It is customary to wait for at least two miscarriages before reasons and treatment is suggest where I am. And it does take three miscarriages plus certain labs to meet diagnosis criteria in diseases such as ASP. But if you have been unable to conceive and are over 35 it is usual for women to seek infertility advice, but I am in a privatized medical situation.

It does look by your serum results and your list of symptoms that you could very well have SS. Good luck I now how hard it is to wait to get started on your family but a healthy mom is best for getting and staying pregnant and even more important once you have a child long term. Good luck getting into rheumie ASAP. Xo

[Ilovechips81 in reply to Roarah]

Thank you, I am blessed with a 15 year old son), if I’m only meant to have him then I’ll be content. I’m hopeful a rheumatologist will be able to give any pregnancy advice as well (gp seemed to think they could).

I’m lucky that I’m not in any pain, I am usually tired, but not debilitating so I work full time.

The GP had said that without my mums lupus and the raynauds etc he wouldn’t have authorised the tests, so I’m glad my mum shares details of her illnesses so readily.I am over 35 and we have been trying since last September - with the miscarriage in April at 7 weeks.

I hope you can get some answers soon.

Thank you for responding makes me feel less alone!

[Hidden in reply to Ilovechips81]

I have Ro negative Sjögren’s but I still had several miscarriages - but then I did also go on to have three healthy sons.

I believe the concern with Ro positive Sjögren’s is the risk that the baby is born with a rash that lasts for a few months and there may be slightly increased risks of other pre-term and post term complications.

So you will probably need extra monitoring and it’s a good suggestion to wait for diagnosis before conceiving and finding an obstetrician who knows about Sjögren’s, Lupus, APS etc. 3 months isn’t that long in the scheme of things and worth being safe.

Sounds like you have a gem of a GP.

[Roarah in reply to Ilovechips81]

Miscarriage chances are elevated by maternal age far more often than by autoimmune also so it could easily be just one of those things and you will Have a perfectly normal next pregnancy. Good luck.

[Ilovechips81 in reply to Roarah]

I don’t think I will ever know for sure, it could be the stress of the miscarriage caused the antibody flare or I may have had it for a few years and not known. I want to be as healthy as possible primarily. I’d love to have a child with my husband, so that is still on the cards. My mum tried for 7 years before having me, they now think she may have been having very early miscarriages as all their fertility tests were clear, both me and my brother were natural conception and she had no issues. It pays to be armed with the facts and prepared so hope I can speak to a rheumatologist soon

[Roarah in reply to Ilovechips81]

OH I think you very well have disease going on but just saying do not expect the worse. It is actually a very positive sign that you can get pregnant, for many that is the hard part. If they find you do have an autoimmune that is a threat to a pregnancy, like APS and lupus often are, they can offer treatments and with treatment I believe success rates for a full term pregnancy is over 80%. But they need to figure out what your antibodies might mean first to decide on course of treatment pregnant or not.

[KayHimm]

Yes, sounds very on top of things and reasonable. If you get pregnant, he can either expedite an appointment with the rheumatologist, call them or send you to an appropriate obstetrician who knows what to do.

It is really good you and your doctors have this knowledge now.

K

[NeuronerdDoaty]

In these days of medicine just hold off a bit. It’s not that long. Talk to more docs. Best of luck to you.

[Cjack29]

Hi, I would definitely wait for rheumatology, they will probably put you on a plan to see what's safest for you and the baby. With sjogrens and being anti ro positive one of the worst complications is the baby being born with complete heart block. The antibodies from our body go through the placenta and attacks the baby's heart. This is what happened to me and I and the doctors weren't even aware I had sjogren's so was all quite a shock (thankfully my baby was a fighter but has ongoing medical issues from it all) I know this might not be a nice thing to read and I think that is one of the worst case scenarios for sjogrens but if I had had the chance to be aware of things that could of happened I would of been more prepared. The doctors and specialists can put a lot in place before hand and will monitor very closely so I would definitely go off their advice x

[Ilovechips81 in reply to Cjack29]

Thank you - I was expecting to be told probably lupus as that’s what my mum has, I hadn’t even thought of sjogrens before yesterday and had no idea of the impact on a pregnancy. I’ve been trying to conceive this month, unaware of this, so will have to see what happens over the next few weeks. I’m going to see how much a private consultation would be

[Cjack29 in reply to Ilovechips81]

Hope everything goes ok for you 😊

[Tala59]

Why you did nt do Anti ds DNA test?

When Anti ds DNA positive, you have definetly Lupus. I have ANA positive, Anti ds DNA positiv, anti Ro60positve, but anti Ro52 negativ....

[Ilovechips81 in reply to Tala59]

Unfortunately that doesn’t appear to be have been part of the tests the doctor ordered. Looks like I may be able to get an appointment with a rheumatologist privately at the start of September, so I’m sure they will request some more bloods.