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SLE?

(11 Posts)
bellainthemiddle Fri 21-Jun-19 22:37:20

This is a bit of a funny one, but I'd really appreciate some advice!

Early in my pregnancy, my blood tests kept coming back a bit funny - low WBC and low platelets. Because of this, they did a few extra blood tests - blood film and ANA, and the ANA came back positive. They then tested the ENA, and that came back positive too. My GP said that she'd have to refer me to rheumatology because the results indicated "some kind of autoimmune problem", but was very much like, "don't worry about it." I have to confess that I then basically didn't give it another thought, since I wasn't having any symptoms and was more concerned about my pregnancy, becoming a new mum, etc.

DD was born early (34 weeks) on 3 June and is doing very well! I am also feeling fine (albeit a bit tired!) but just got my rheuomatology letter through with an appointment for next week at the Lupus clinic. I'm feeling a bit thrown because I'd totally forgotten about it. And just having become a parent, I really really really don't want to be diagnosed with a lifelong condition! Well, I suppose nobody ever does, to be fair.

The other thing that's throwing me is that I think I literally have NO symptoms, except for the low WBC count etc. No rash, no aches and pains, no fevers, no unusual tiredness. So, I guess what I'm asking is, can there be such a thing as a "false positive" on these blood tests? Or is it more likely that I do have some kind of autoimmune condition and just don't have any symptoms yet?

bellainthemiddle Sat 22-Jun-19 10:43:57

Hopeful bump?

sunday38 Sat 22-Jun-19 22:07:45

Not sure l can be of much help but I'm in a similar situation (sort of!). I was referred to a rheumatologist for possible inflammatory arthritis but became pregnant while waiting for the appointment and all my symptoms disappeared. Baby is now 4 months old and my symptoms have returned so I'm awaiting a new rheumatologist appointment. I've heard that pregnancy can quieten down the immune system and so symptoms of autoimmune disorders can disappear and then flare up after the baby is born, which I think has happened to me.

No harm in you going to the appointment and seeing what they say. Congratulations by the way!

Carlamity Sat 22-Jun-19 22:25:42

I think a proportion of the population have a positive ANA test with no underlying condition. I had this several years ago but on retesting more recently my ANA was negative. I don't know about ENA, though. I would definitely go to the appointment even though you have more important things on your mind! Hopefully it will all be a false alarm.

choirmumoftwo Sat 22-Jun-19 22:55:13

The ENA is not a single test but looks for several proteins found in connective tissue disease. You really need to know which bit(s) of the test were positive but the rheumatologist will be able to explain. Any diagnosis is based on the clinical picture with the blood results helping to confirm. All the best to you.

domton Sat 22-Jun-19 23:48:33

I wouldn't jump to lupus. About 5% of the population has a positive Ana as a matter of course. As has already been said an ena is not specific, but detects the presence of some auto antibodies, but are used with clinical symptoms to diagnose.

I have sle, and I'd be amazed if you had it without being aware of symptoms, most of us have symptoms for years before diagnosis. Having said that it's a weird disease and hormone linked.

At this stage, it really could be something and nothing, or could be one of the lupus peripheral things like sjorgens.

Good luck, and feel free to ask any sle questions xx

bellainthemiddle Sun 23-Jun-19 14:12:14

Thank you very much for the replies!

This was what my ENA came up, but I don't really know what any of it means!

Jo-1 antibody level NEGATIVE
Scl 70 antibody level NEGATIVE
La antibody level NEGATIVE
Ro antibody level Positive (+++)
SS-A (Ro 60 kd) (ENA Ab Profile) Positive (++)
Sm antibody level NEGATIVE
Ribonucleoprotein 70 antibody level NEGATIVE

As far as I can tell, one of those is a Sjogren's indicator, but I don't think I really have any Sjogren's symptoms either!

I'll definitely go to the appointment though. Believe it or not, I'd literally forgotten about this, and I'm just feeling a bit anxious about it now :/

domton Sun 23-Jun-19 18:00:55

Sm Smith's antibody very specific to lupus, so good that's negative. smile looks like it's leaning towards Sjorgen. Hang on I'll find a link for you. Need to pop out then I'll post it, but that result is def more sjorgens them lupus. Be back now.

domton Sun 23-Jun-19 20:21:20

labtestsonline.org.uk/tests/ena-panel

I use this site for more out of the way tests, it's very explanatory. Check your results against theirs. I haven't checked but at a first quck glance it would seem to me to be sjorgens linked, but I may be remembering incorrectly. Have a look.

labtestsonline.org.uk/tests/ena-panel

bellainthemiddle Mon 24-Jun-19 01:03:51

@domton, thank you! That's helpful. It does look like the positive ones on my test are the Sjogren's-related ones, but the weird thing is that I don't even think I have any Sjogren's symptoms either:/

@sunday38 I hope you get your new appointment soon! I guess pregnancy causes so many hormonal changes that it's not surprising that symptoms can come and go. And congratulations to you too, btw!

This seems particularly weird to me because (I think) I have literally no symptoms. The only reason they even did the test was because my FBC was consistently so out (they also did a blood film which had 'pencil cells' or something, but nobody seemed very fussed about that so I didn't really enquire as to what it meant). I hope I'll get some answers at the appointment!! As you've said, I hear that people have symptoms years before having a positive ANA test and getting a diagnosis, so I am perplexed that it seems to be the other way round in my case!

domton Mon 01-Jul-19 17:52:06

How was the appointment? X

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