SLE after APS?

[azahran]

Hello there.

I was diagnosed by being primary APS like five years ago. Could ivdevelop SLE now ?

[Lure2]

I read that you had a Stroke or TIAs 3 years ago and were diagnosed with APS.

Did you had one or three of the antibodies they test for APS positive twice taken within 12 weeks time between the bloodtests?

It is difficult to diagnose these autoimmun illnesses as several go hand in hand. Therefor it is important to have a Specialist of autoimmun illnesses who is up to date with all the facts and knows the correct bloodtests to take and symptoms also.

About 30 % of people with SLE also have Cardiolipin-antibodies.

Primary APS can certainly go over to secondary APS if they find new antibodies pointing to other autoimmun illnesses. The antibodies can change from negative to positive for some time or vice versa.

Why do you ask about SLE?

[azahran in reply to Lure2]

Hello Lure

Thank you for your reply. I believe I did the three tests for APS. Two of them still positive.

Now my hematology did the ds antibody test of ANA. Antibodies are present . I will see her in a week. But did google and read about SLE. so I was wondering, since my first doctor told me I am primarily APS and I will never develop Lupus.

[azahran]

Hello

Thank you for your reply. And for the informative link.

After reading it , I think I do not have symptoms of lupus . Well maybe mild hair loss. The hematology doctor run this test after I had an episode of bloody urine, and Ct of kidney was fine.

The ANA results reports moderate positive. And that dsDNA is about 30. And ANA pattern is homogeneous.

So maybe false positive. I do not know.

[Lure2 in reply to azahran]

Yes as APsnotFab says if you have positive anti-DNA-antibodies that could point to SLE and you should talk with your Doctor about that.

I am Primary APS but have low titres of anti-DNA

[MaryF Administrator]

HI a lot of us on here have Lupus as well as Hughes Syndrome, I am not sure which developed first in me or if they came at the same time, certainly it took years for all the dots to be joined together. I was very unwell as a child, almost continually with ever ailment possible, and then at 12 came the violent migraines, followed by Pericarditis several times in my later teens, never tested, at that time, but thankfully later I ended up at St Thomas' Hospital with clots during my first pregnancy, thank goodness I went there, but still no diagnosis for years afterwards. MaryF

[azahran]

Hi Mary.

I remember that I had headaches during my childhood. Sometimes I also had white dots in front of my eyes or even everything goes white for few minutes along with the headache. But all what I did is taking asprin and go to sleep. And it worked till I grow up and began to take tablets for migraine. At late twenties I fainted at home just after waking up in the morning . And doctors said blood pressure went too low. And nothing else. Just ordered me to take rest ! . Late thirties I fall down the stairs with no sign of anything wrong with me as doctors said at that time. Then I got this TIA in Feb 2016, and finally diagnosed by APS one and a half month later :).

During pregnancy nothing bad happened just tooooo sleepy . Now appeared this new ANA test. I will meet the doctor next week

[Kerlampert]

Yes I have both...first diagnosis was Lupus because of symptoms...achy joints and blood test positive. Then, later in life hospitalization with a large clot in my rhigh... more blood test and bingo... now APS diagnosis.

[KellyInTexas Administrator]

Hello Azahran,

I’m primary APS, meaning I still am a little unclear myself exactly what it means, ( as I have a few other tag along auto immune conditions that fall under the ,”connective tissue category “ , but I can tell you I absolutely do not have full blown Lupus.

Some definitions of primary APS specify that in order to be ,” primary APS” you must have no other auto immune diseases, and APS must the the only one.

I think the more widely and accepted , but more importantly accurate definition is that it’s the “ primary one “ giving you the most critical symptoms, and the lupus part of it is not as severe as it is with ,” full blown “ lupus patients who need medications for renal disease associated with classical SLE.

This is how I understand it.

We Primary APS patients are on the ,”Lupus spectrum.” I was told by my Rheumatoligist to think of APS as kissing cousins. My GP said he would say they were more like evil twins!

I think my Rheumatoligist did say it best in my particular case:

“Kelly, you are very ,”Lupusy”.

[azahran in reply to KellyInTexas]

Hello Kelly.

Oh, I never thought about it that way: being APS and have lupus spectrum . Thanks, that explains things now.

But you have a nice doctor by the way