AntiPhospholipid Syndrome

[Arnold1001]

Hi,

Anyone aware of this condition - I’m anticipating to be diagnosed as having it.

Read some content via Dr Google but would welcome any insight from those in the know/with experience of it.

Any guidance much appreciated.

Thanks.

[margaretjo]

Yes I have antiphosphlipid and have had for many years. My history is 5 miscarriages 5 pulmonary embolisums a stroke and various other problem with my lungs. There is a great page on healthunlocked it goes by the name Hughes syndrome the other name for aps . You are welcome to private message me if you have specific questions and I will try to help it I'm not a doctor. What lead you to bring tested for aps

take care

[Arnold1001 in reply to margaretjo]

Thank you for your reply and the offer of discussion re questions; that’s very kind and I may well do that as questions arise.

The reason for APS testing is a DVT suffered 9 months ago. I’ve had one blood test showing slightly elevated lupus anticoagulant (1.3) and due another test in March.

[Jumper99]

Hi. I’ve had APS for 18 years. May I suggest the website for APS Support UK as being very good for information on this condition. There is also a site on here (healthunlocked) called Sticky Blood which is an old name for the condition but arises because of our blood clotting so easily.

It’s a complex condition which is not fully understood. The major problem is that our blood clots very easily so we usually are given anticoagulation such as warfarin. But it can cause many more minor symptoms too.

[Arnold1001 in reply to Jumper99]

Many thanks, I’ll be sure to check out the sites you’ve referenced.

Best wishes.

[Hidden]

One of my friends has Hughes syndrome and only found out after she kept having miscarriages and when she got given injections of heparin she was fine and has just had a baby.

Being diagnosed with it isn't the end of the world as once they give you your treatment you will be absolutely fine.

Best of luck to you!

[Arnold1001 in reply to Hidden]

Thanks, I hope you’re right!

Great news re your friend.

Best wishes.

[Suebo2 Moderator]

It is important to know that if you DO have APS, you cannot have the newer anticoagulants. Fingers crossed that you are clear today!!

[Sevenstar in reply to Suebo2]

Please Suebo2 , why can't you have the newer anticoagulants , I was diagnosed in March and still learning, is warfarin the only thing we can take ? Thx

[Suebo2 Moderator in reply to Sevenstar]

There is some evidence that the recurrence of VTE on NOACs is higher than on warfarin?

[Sevenstar in reply to Suebo2]

Ok thanks for replying, lots to learn !

[Dartsnerd]

I have antiphosphlipid and lupus. Just been rediagnosed after no treatment for the past 27 years. History of miscarriages, eventually with daily heparin injections I had 2 successful pregnancies. Had 2 dvt's at 18 years old. Doctors now want to put me on warfarin for life. I'm having a battery of blood tests and referrals done at the moment. Interested to see there is a site with information, as never really had any information orginally. Would be good to keep in touch with someone with a similar story.