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Sticky Blood-Hughes Syndrome Support
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Maybe APS....maybe not

Hi All,

I'm after a bit of advice please...? Apologies, as you must have been asked this so many times!

I've previously had a provoked DVT after an operation in 2009 (treated with Warfarin for 3 months). Then in January this year had a small PE (treated with Warfarin for 6 months) and told at my follow up appointment in May I would have to be on anti-coag treatment for life. I requested to go onto Clexane, as I wanted to try for a family. A week later I had another suspected PE. I say 'suspected' as I was going onto Clexane anyway and they didn't want to subject me to any more radiation via the tests just to prove I had one. Blood tests are all normal, apart from the lupus anti-coag, which was positive.

I've gone to see the hematologist today and she's repeating the lupus anti-coag test but cannot confirm APS. We discussed my medical history of 2 miscarriages, migraines, tiredness and clots. She said tests alone cannot confirm APS and you should look at the history...but still wouldn't confirm APS.

Any advice on what to do next would be really helpful, as I'm frustrated that no one can explain or confirm the cause of my PEs.

Thanks for reading my essay!

Helly :-)

6 Replies

Hi and welcome. It's normal to repeat the antibody tests 12 weeks apart to see if they are still positive but your Harmatologist is being somewhat of a Hypocrit by saying that you can't confirm on tests alone and makes you do exactly that! If she wanted to take your history and make a decision then why didn't she just do it! Sigh

We tend to advise someone in your situation to see one of the recommended APS specialists on our list which can be found on our "pinned posts" top right of your screen if on a computer or at the bottom of the main screen if on a mobile.

Only a specialist who sees patients like you daily will have the confidence to dX on the spot along with your tests, medical history and current symptoms.

If you want to try for a family and with your history it's imperative you get a dX. Are you on any Anticoagulation at the moment? It's also important you go to a gyny with APS experience. Which part of the country are you in? Sorry for all the questions but it will help us help you better.

You are almost there so hang on till all the dots are finally joined up.

1 like

Thank you so much for replying to me. On Clexane for the past 6 weeks, previously Warfarin since January. Not under a gyny yet, she is looking into that. I did try and get referred to a specialist via my GP but I didn't get very far. I live in Manchester, UK.

Any recommendations for tiredness as well...?




There are three specialists according to our list at the Manchester Royal Infirmary. Prof Ian Bruce, Clinical lead, Dr Rachael Gorodkin, Consultant Reumatologist and Dr Jecko Tachil, Consultant Haematologist. Be insistent with your GP, tell them you have a right and that you will take it to the CCG if you get no joy. With luck whoever you are referred to or ask to be referred to will makes sure you are seen by the right Gyny too.

Plaquenil is the normal medication given for tiredness and aches and pains but I don't know what the protocol is for taking during pregnancy.


Thank you so much for that, you're very kind to reply so quickly. I'll contact my GP again.




Hi, I agree with all the advice you have been given by my colleague, I hope things improve for you. MaryF


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