Possible lupus & pregnancy

Hi, I'm new here and wondered if anyone has any advice or thoughts on my situation. Over the summer I suffered a bad chest infection for 6 weeks, which cleared up by july but I have been experiencing severe fatigue since that time (i am pregnant also which is likely contributing but this feels a lot worse than pregnancy tiredness), and also headaches / migraines aggravated by light and muscle aches. Last month my gp ran some blood tests and ANA came back as positive 1/160 speckled and I was then referred to rheumatologist. At the time i saw her she mentioned lupus was a possibility but thought my symptoms weren't fully suggestive of it as haven't had joint pain or rash ( though since reading up on lupus i wonder if i have the butterfly rash as i do have redness across my cheeks in this pattern but i'd always put it down to sun damage and am good at covering it up with make up so didn't mention it at the appointment, and i've since felt twinges in my wrist and fingers though this may be paranoia setting in!). She ran more tests including ANA which came back negative this time but she said RO was equivical DSDNA negative, which she said was a borderline result and as these antibodies can cross the placenta it presents an increased risk of a heart defect in baby, though she did explain risk is still low but have been referred to fetal cardiology dept as a precaution). After doing some googling to find out more about this it seems the concern relates to congenital heart block as a complication of neonatal lupus syndrome if that is present, but as it is less than 1% risk I'm not worrying too much. I am very concerned though if this fatigue continues like this after baby is born as i have a toddler to look after too, and as I don't really understand the blood test results I'm feeling a bit in limbo not knowing if i have lupus or not. Rheumatologist is going to repeat tests a couple of months after baby is born when I hope things will become clearer. Am just wondering is it common for ANA results to vary like that if lupus is diagnosed, sometimes being positive and sometimes negative? Also as I don't have bad joint pain and I understand this is usually a main symptom of lupus does this mean I'm a lot less likely to have it or do many people have lupus without the joint pain? Also wondering if there is anything diet related that may help?, i'm avoiding gluten since gp mentioned it may help and i'm desperate! I do feel somewhat better for it but fatigue still as bad as it was so not sure how much it is helping. Thanks for reading if you got this far as that ended up quite long! Any thoughts or advice gratefully recieved.

5 Replies

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  • Hi mrs_t,

    We have heard lots of anecdotal evidence of blood test results fluctuating in lupus, so it certainly isn't unheard of. What has the consultant suggested next? Will they be monitoring you closely or are they going to try any treatment for you?

  • Hi Paul, thanks for your reply. The consultant has just suggested repeating the blood tests a couple of months after baby is born which will be around late January. There has been no mention of any treatment as yet, I guess any diagnosis will depend on the blood tests.

  • Yes, I imagine they will need to repeat the blood tests after your pregnancy to confirm anything. Do they intend to do any extra scans during the pregnancy?

  • Thanks, Yes I'm having a scan next week at the fetal cardiology dept to check the baby's heart

  • Great :) Let us know how you get on.

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