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Hughes Syndrome APS Forum

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I have been tested twice for APS with 2 positive results as a result of recurrent miscarriage. Dr said it will only affect me during preg??

Rbpw profile image
Rbpw
4 Replies

I am not sure how this would work. If tested when not preg then surely it affects me regardless. Very confused, any ideas?

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Rbpw
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Manofmendip profile image
Manofmendip

Hello.

If you have tested positive, twice over a reasonable period then you are correct and your Dr should understand that you have tested positive for APS.

It may well affect you in pregnancy but that is only one aspect of APS. You may have other symptoms that need considering and the Dr should look for these too.

Where are you from and who manages your APS?

Best wishes.

Dave x

Hi there

Some women only have pregnancy related APS - however, it is currently impossible to tell who will be affected in the future. Many women choose to take aspirin (75 mg daily with your GP's consent) as a preventative. The main thing is to watch out for symptoms. Much more research is needed in order to find out which women will go on to have thrombotic APS as well as obstetric - researchers are focussing on the different types of positive tests as these can often give clues.

Kate (HSF)

pepperderr profile image
pepperderr

I was told the same thing...that it only affects people that are pregnant so if I don't get pregnant again I won't have any reason to worry. I went on with life thinking all would be fine and it was for a few years afterwards. I think it was 2007, which was 3 years after my pregnancy, that I started having issues. I had TIA symptoms. I have had problems off and on ever since. I was told I had a renial vein thrombosis. I thought it was a UTI. The doc that diagnosed me with APS said I have had 6 positive tests over the years. I also had a stillbirth due to a blood clot years before I knew about APS. I was just told I had something like lupus but they didn't know what. It depends on which doctor I go to weather I have APS or not. My new doctor doesn't believe I have it even though I have had the positive tests and the blood clots since one time I was tested it was normal. Please don't just assume you are fine when you are not pregnant. It may be but it also might not be.

Hopingforababy profile image
Hopingforababy

I've also been told it's pregnancy related for me. I've had a still birth and two miscarriages. Prior to this no symptoms. However, I am erring on the side of caution and take low dose aspirin. I've done a great deal of reading on this and spoken to various doctors. APS antibodies fluctuate according to your immune system activity such as other auto immune diseases. Immune system is affected due to pregnancy hence it's adverse reaction often against the pregnancy. I know much research is being done but I am of the view that my immune system is a bit crazy and I'm not taking any chances in the future. Best wishes x

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