Anyone here have Antiphospholipid/Hughes syndrome?

[PoppyD93x]

I am about to be tested for Antiphospholipid syndrome because i have a history of blood clots (lung and brain).

Just wondered if anyone else has it or has been tested for it? Do you require medication? How does it affect your life?

[leghairdontcare]

Yes I have it. Discovered after a clot. It's quite common but lots of people don't know they have it so the only change to me is that I take aspirin daily. I would also receive additional care/treatment if I became pregnant.

[PoppyD93x]

@leghairdontcare Where did you have the clot if you dont mind me asking?

I took blood thinning injections daily whilst pregnant and will go back on blood thinners after having this blood test so the same as you really.

[seanceinterrupted]

I have it; I had daily injections (pregnancy), as above. Otherwise I just take aspirin if I fly

[PoppyD93x]

@seanceinterrupted glad to hear it doesnt affect your daily life too much. If i google it it comes up with all sorts of horrible stories.

[Laniakea]

yes, it caused a lot of problems in my pregnancies but I've only ever had one episode of clotting while not pregnant. I had clexane injections in pregnancy/6 weeks afterwards then moved on to daily aspirin but I ended up having a bleed in my bladder so now I only take the aspirin if I'm doing something that involves hours of sitting (e.g. flying). I avoid the combined pill too.

[PoppyD93x]

@Laniakea there's definetly pros and cons of blood thinning medication. I have also been told to stay clear of the pill. Im worried to go on any contraception tbh but also i dont want another high risk pregnancy. The only time ive had clots is on the pill and pregnant.

[leghairdontcare]

Clot was in my leg - discovered about 2 weeks after my son was born. For contraception, I had the implant but that's always been my preference.

[PoppyD93x]

So it's definitely linked with pregnancy then

[leghairdontcare]

It's a risk factor in pregnancy but most things are tbh.