Positive Ana and pregnancy

[Ilovechips81]

You guys have been a great help and wonder if you can help again?

So 4weeks pregnant with positive Ro 52 and 60. No diagnosis yet from first private rheumatology appointment. (Either inactive lupus or sjogrens) currently listed as inactive connective tissue disorder

Midwives have just advised I should be on some medication ‘hydroxy something (they didn’t know the name). They will escalate me to an obstetrician later on if I get that far but have said I need to get my rheumatologist to prescribe this medication. Is that standard practice? Has my rheumatologist missed something? After one miscarriage earlier this year I don’t want another one if it can be avoided

[Krazykat26]

Congratulations on your pregnancy 💐💐💐exciting n worrying times ahead then eh? Sounds like you're in good hands though.

The drug that the midwife is referring to is called hydroxychloroquine which is an anti-malarial drug n is the usual drug that we're first prescribed following diagnosis of autoimmune disease. Your rheumy will probably prescribe it in due course..but be aware that I'm a lupie but not a childbearing one now..I have two daughters but didn't have lupus then!!

Be assured that your rheumy will take good care of u n so will your midwife..it's important that u let your rheumy know that u are pregnant!!

Hydroxy is fairly safe I believe but when I first started it I did experience heartburn as a side effect..I found that taking it with milk helped.

Also u have to get your eyes tested regularly as it can cause eyesight problems but your rheumy should tell u this at your next appt.

I hope that all goes well n go easy on the chips!! 😹😹Xx

[Ilovechips81 in reply to Krazykat26]

Thanks krazykat26. I too had a son when not suffering so this is a first for me.

Rheumatologist knows about the pregnancy as I tested positive that morning, have left a message with his secretary asking for advice about the midwife comment. (Have now spoken to my gp who doesn’t really want time to go the hydroxychloroquine route unless absolutely necessary) so feel slightly comforted, just need to hear back from the secretary.

I think I’m just a little sensitive as I want to prevent another miscarriage if possible. Thank you about eye tests - mine were checked earlier this year and seem ok and apparently his check on Tuesday shows I am making tears.

[Krazykat26 in reply to Ilovechips81]

Yes its the role of your rheumy to prescribe hydroxy so GP not being willing to prescribe is normal I think..u will need close monitoring..u will be having bloods taken left, right, n centre!!

How do u feel generally? Have u got autoimmune symtoms at the moment? Xx

[Ilovechips81 in reply to Krazykat26]

At the moment the rheumatologist says whatever I have is inactive. He checked my joints, tears, blood pressure, listened to my heart and chest, checked my mouth and abdomen. I feel ok, just tired (but that could be exacerbated by growing a small human). I have had some achy joints but that could be crocheting (have since stopped doing it and they are less achy). My mum has lupus so he thinks I’m more likely to have or develop that.

I don’t think he wants to put me on meds at all if possible for now (and Im happy to wait till I need them). I just want to make sure that there isn’t something we should be doing now I’m expecting. I was heartbroken with the miscarriage (which was most likely age related chromosome issue I’m 38) and want to do everything I can to avoid it happening again.

[Krazykat26 in reply to Ilovechips81]

You're bound to be concerned..I think that's completely normal but it's important that u stay stress free as poss..easier said than done I know but if you're not experiencing symtoms it might well be that your rheumy will delay hydroxy until he thinks it's necessary..I hope that u have some confidence in your rheumy..he's looking out for u. Xx

[lizardlover64]

I am positive ANA and DsDNA though low level, I am on Hydroxychloroquine so that is standard for these blood results. I have inactive Lupus so they say but I have joint involvement so saying its inactive is not rightly true, some aspect of it will active. I also have developed stage 3 kidney disease so keep an eye on kidney function and get regular eye tests as it can effect the back of the retina taking Hydroxychloroquine, but I have been on it 10 years and I have had no problems, I also had 2 positives for Lupus anticoagulant which indicated anti phosphlipid syndrome, and HLA B27 positive. I also have Fibromyalgia and and just had a hip replacement, so it as I said not active is not a word to be used, it works away in the background.

[Paul_Howard Partner LUPUS UK]

Hi Ilovechips81 ,

Congratulations on your pregnancy and I hope it is a healthy and successful one!

Hydroxychloroquine is commonly used throughout pregnancy for people with lupus or connective tissue diseases because it helps to reduce the frequency and severity of flares and has been shown to improve the success rate for pregnancies.

We have a booklet about lupus and pregnancy with a lot more information if you would like to read it - lupusuk.org.uk/wp-content/u... (I can also send you a physical copy in the post if you would like; just send me a private message or email [e-mail] with your name and address)

[Ilovechips81 in reply to Paul_Howard]

Thank you I will have a read of the book. Just waiting for my sticky blood test results

[dk11]

Hi, llovechips81, l have been diagnosed with UCTD , four times miscarriage, an overlapping ulcerative colitis. Ask your specialist to do blood tests for antiphospholipidic syndrome. It means sticky blood. This will affect baby development and survive. If test is positive you will have to get Clexan or similar medication straight away. Do it as soon possible to help pregnancy to continue well. Of course , on specialist advice. Good luck and God bless you with beautiful and health baby.

[Ilovechips81 in reply to dk11]

Thank you! I’m currently waiting for my test results for this (had blood taken on Tuesday). Hoping to find out as quickly as possible, have managed to get midwives/consultant there and rheumatologist talking directly as using me as a go between was stressful and a bit pointless

[Ilovechips81]

Just thought I would give an update. I had a healthy baby girl last week following a stressful pregnancy worrying if my antibodies had caused any damage.

We had several feral heart scans and additional checks to monitor fetal heart rate and little lady was signed off last week after a good ecg result!