Must BOTH tests be pos to have APS? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Must BOTH tests be pos to have APS?

starluna3 profile image
3 Replies

Hi all,

New to this community and looks like a lot of great information from you all!

I have had an "undeclared connective tissue disorder" or something in the "lupus family" for 8 years now, but never consistently test positive for anything. I have a pos ANA then next time it's neg.

Well 3 years ago I had HELLP syndrome which is a severe form of preeclampsia and had my son at 31 weeks. We found then that he was growth restricted and only weighed 2 lbs. Docs never gave me any info on why it happened and just said well everything turned out okay.

Nearly 2 years later I got pregnant again. This time they tested me and I tested positive for APS. They put me on asprin and closely monitored my pregnancy. My 2nd APS test came back negative so they didn't put me on anything other than asprin. I made it to 37 weeks exactly and started having high BP so they delivered. This baby was good, no growth restriction.

It's been a year since my baby was born and my doc doesn't plan to repeat the test despite having the clinical of growth restriction and preterm birth and 1 positive test.

Does anyone else have an APS diagnosis without 2 positive tests? Or a lupus diagnosis without consistent ANA results? Should I push my rheumy to retest or does it matter?

Thanks in advance!

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starluna3
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KellyInTexas profile image
KellyInTexasAdministrator

rheumnow.com/content/2019-e...

Hello, and welcome to the forum.

After reading through the guidelines,

Come back with any more questions.

The ANA is not exclusive to APS. It’s indicative of autoimmune diseases in general that fall under the connective tissue disease umbrella- including lupus.

So glad you and baby are doing well!

MaryF profile image
MaryFAdministrator

Hi, some people have worse Hughes Syndrome/APS in pregnancy and it calms down again, I have may diseases, including Hughes Syndrome/APS and Lupus, however outside of pregnancy I have been on two Aspirin a day, and so far that has suited me, I am also on other drugs but not an anticoagulant like Warfarin. Test results come and go, I was sero negative for years, but now regularly pass two out of the three tests. Do you have a Hughes Syndrome/APS specialist? If you don't, do let us know where you are located. MaryF

Jumper99 profile image
Jumper99

I e been diagnosed as having a ‘lupus-like’ illness because it acts like lupus but my ana tests are all negative.

To be diagnosed with APS (which I also have) you need two consecutive blood tests 12 weeks apart to be positive as well as having some clinical evidence.

This must be very frustrating for you 😟

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