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Just been diagnosed with antiphospholipid syndrome. Please help me understand this..

(12 Posts)
Rosielee93 Fri 03-May-19 12:29:55

I have just been told by my haematologist consultant my blood results have come back with a positive lupus anticoagulant result meaning i have been diagnosed with antiphospholipid syndrome. I have already had two life threatening blood clots in my life and im only 25. She wants to see me in the next 2 weeks to discuss what she wants to do. How bad is this? Does anyone else have this?

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MummaPI Sat 04-May-19 13:26:40

I'm no expert but my brother has this. He takes warfarin and has check ups to see what his blood levels are. Now hes on meds it seems not to be a problem.

Rosielee93 Sun 05-May-19 08:17:45

Thanks for the reply. I will ask for medication for sure. She wasnt sure it was necessary but i dont want to live my life waiting for the next clot.

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Supergrassyknoll Tue 07-May-19 22:49:42

I have this. I was diagnosed after recurring miscarriages and a stillbirth at 29 weeks. I had serious pre eclampsia but I now have a precious little boy after I high rush but successful pregnancy aged 38. I had open heart surgery to repair a mitral valve aged 37, I've had a detached retina and a few other issues including brain infarcts. The fact you've been diagnosed so early is brilliant because you can be anticoagulated. Ask me anything and if I can help I will xx

Supergrassyknoll Tue 07-May-19 22:50:36

Oh and buy the book Sticky Blood Syndrome by Kay Thackeray, it explains it all really well x

Supergrassyknoll Tue 07-May-19 22:51:37

sorry high risk not high rush!

Eh1112 Tue 07-May-19 23:50:05

Hi, I have this so I'm following this thread closely. I have had six consecutive miscarriages and suffered gall bladder failure at 17 (although as diagnosis was only recent my consultant can't prove that APS was the cause of my gall bladder issues). I have to have a whole heap of medication both before and during pregnancy but since being on medication have managed to carry two beautiful girls to 39 weeks (both delivered healthy although small). Currently in my early 30s with no other issues yet. I've only met one other person with APS so it seems a bit of an unknown.

Bintheredunthat Wed 08-May-19 00:01:33

I have it too.
I know how it feels to suddenly learn you’ve got something that you’ve never even heard of, it’s such a shock & a lot of information to try to take in all at once.
Took me a while to get my head round it all.
It’s so good that it’s been diagnosed sooner rather than later. Potentially saved you from all kinds of problems in the future.
I was diagnosed 3 years ago after a sudden large blood clot in main artery in my arm.
I take Warfarin & hydroxychloroquine (slightly suppresses the immune system)
I’ve had no side effects from Warfarin.
Warfarin makes your blood less ‘sticky’ & as well as preventing clots it can relieve symptoms that you didn’t know were caused by APS.
I had lots of unexplained headaches & visual auras, general aches, pains & fatigue for years. These went away after Warfarin. I can tell if my INR drops by how I feel.
You may well feel better than you have for a while.
The best thing I ever did was buy an INR self test machine so I can keep a close eye on my INR & adjust my Warfarin dose as needed. Without trips to hospital for blood tests.
My INR target is 3 & if my INR drops below 2 I have to give myself a Fragmin injection or I get visual aura, headaches etc.
My INR jumped about a bit at first & colds & bugs can make it jump up. Getting the machine & not having to be at the hospital for blood tests every few days was life changing & helped me feel more in control of my life.
You need to be careful to keep the amount of vitamin K on Warfarin in your diet consistent as a sudden increase or decrease can effect your INR level.
The warfarin regime can seem a bit daunting at first, so many bloomin blood tests, but it will soon settle down & your life will carry on the same as before.
Good Luck

Rosielee93 Wed 08-May-19 07:42:58

Thanks so much for your replies.

@Supergrassyknoll were all these things caused by aps?!

@Eh1112 what medication are you on long term?

@Bintheredunthat Its good to hear some positive stories from warfarin. Ive heard it can be quite a hard core drug to be on. See i need to learn more about aps i didnt even know you can get a clot in your arm!!

OP’s posts: |
Supergrassyknoll Wed 08-May-19 09:48:16

Yes I believe so

Eh1112 Wed 08-May-19 11:29:32

I'm not on anything currently. I came off Aspirin and Clexane six weeks after giving birth (and Prednisolone at 15 weeks). I'm currently waiting to hear if I need to be on anything long term. Unfortunately as my gall bladder problems were over 10 years ago and pre diagnosis, it's impossible to say if they are linked. Hoping to find out more in a couple of weeks.

Rosielee93 Wed 08-May-19 14:10:24

@Eh1112 pretty much same as me then I've got a consultant appointment next Tuesday to decide what to do long term. Now i know I've got this i feel like a ticking time bomb just waiting for another clot.

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