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Anyone here have Antiphospholipid/Hughes syndrome?

(10 Posts)
PoppyD93x Sat 06-Apr-19 16:49:41

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?

OP’s posts: |
leghairdontcare Sat 06-Apr-19 16:52:51

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 Sat 06-Apr-19 17:01:22

@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.

OP’s posts: |
seanceinterrupted Sat 06-Apr-19 17:09:38

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

PoppyD93x Sat 06-Apr-19 18:40:56

@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.

OP’s posts: |
Laniakea Sat 06-Apr-19 20:29:36

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 Sat 06-Apr-19 20:38:29

@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.

OP’s posts: |
leghairdontcare Sat 06-Apr-19 23:53:44

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 Sun 07-Apr-19 09:38:00

So it's definitely linked with pregnancy then

OP’s posts: |
leghairdontcare Sun 07-Apr-19 13:52:48

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

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