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Hughes Syndrome APS Forum

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HAS ANYONE BEEN DIAGNOSED WITH APS only when they became pregnant with their first child, Did Pregnancy kick off the illness?

Cherrydi profile image
8 Replies

I had my first symptoms of APS when I got pregnant with my first child, although I went on another years and a DCT and PE and multiple brain clots before diagnosis, Has any one else, been diagnosed when pregant for the first time, I wondered if PREGNANCY CAN KICK OFF THE APS due to hormones, My friends daughter also did not know she had APS until she became pregnant, so it makes me think ?

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Cherrydi profile image
Cherrydi
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8 Replies
daisyd profile image
daisyd

I think being pregnant makes a difference.

Before pregnancy nothing like Hughes syndrome, then

DVT when pregnant which saved my sons life. As 32 years ago I was admitted into Hospital and given heparin injections. I was 26 weeks pregnant,he was born at 31 weeks 1lb 14oz.

Other pregnancies problems after 20 weeks

I had a heart attack when I was going through the menopause.

I definitely think it has something to do with hormones.

Cherrydi profile image
Cherrydi in reply to daisyd

I agree hormones make it worse I am going through the menopause now, and I am a lot worse, it isn't easy is it. Was you on any blood thinners when you had your heart attack and Are you on warfarin or aspirin now

daisyd profile image
daisyd

No only Asprin, I was diagnosed probably about 10 yrs ago but only put on 75mgs Asprin, although I know now with my medical history I should have been on warfarin.

My Heart attack was caused by a blood clot.

I am on Wararin now and my inr target is about 3.5 and I can walk up hills better than I did before my attack

Cherrydi profile image
Cherrydi in reply to daisyd

I am pleased to hear that you can walk up hills better now that is great, I have been on Warfarin and Aspirin for about 17 years, I went 8 years after having symptoms when I was pregnant with my son, until I was diagnosed, when I had a DVT and PE, I have a friend whose daughter has been diagnosed with APS and is pregnant, and has apparently been told the APS will go away after she is not pregnant, I personally have never heard of it going away once you have it..... IF ONLY !

PepperT profile image
PepperT in reply to Cherrydi

I had no signs of APS until I was pregnant, really bad livedo appeared on arms and legs, memory problems, headaches etc, once my daughter was born I didn't have anything significant until the menopause and then it started again big time.

Cherrydi profile image
Cherrydi in reply to PepperT

Was you diagnosed when you were pregnant, or when you had your menopause? Are you on any medication for it?

PepperT profile image
PepperT in reply to Cherrydi

Hi, still battling for a final diagnosis although I am almost there, after many problems with my previous GP I changed and was referred to a rheumatologist, I have had first set of positive tests and am waiting for the second set. I started taking 75mg of aspirin per day (of my own volition) about 7 months ago and then stepped it up to 150mg. Although I had two miscarriages before my first daughter, high blood pressure/pre-eclampsia, early delivery and low birth weights with both my children it was never investigated at the time. Once I wasn't pregnant the symptoms subsided until the menopause then they came back with a vengeance. Looking back now to when I was pregnant (21yrs ago) I can see all the signs of APS which I hadn't even heard of then

Cherrydi profile image
Cherrydi in reply to PepperT

I understand exactly what you mean, I had awful time when pregnant and had what I now know was a stroke, when pregnant, I passed clots after he was born and was very ill, migraines over the years, were more like mini strokes, but I wasn't diagnosed until some years later. I hope you can get some good support it is very difficult isn't it, I am definately worse now I am menopausal. Take care and message any time X

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