Possible APS & intermittent sudden severe breathlessness

My daughter has had two positive lupus anticoagulant tests, followed by a negative one - lots of symptoms but fortunately no confirmed clots. Although GP was happy to dismiss the question of APS, on the advice of the fabulous folk on this website we have made an appointment to see Prof Hughes next month. But I have a couple of questions: firstly, I have put her on low dose asprin "just in case" - is this sensible or an over-reaction? Secondly, and more importantly, she has had very mild asthma in the past but for the past month she keeps getting really rapid onset feeling that her lungs are closing up - it comes on intensely over a couple of minutes, and she finds it hard to talk. Salbutemol helps but doesn't completely make it go away. She has upped her preventer but it is happening 2-3 times a day. I am assuming that if it was anything to do with APS then it would not fluctuate or improve at all. We are due to see the GP but, although he is lovely, he definitely looks for horses not zebras, and I would appreciate your thoughts on whether I should push for further assessment?

Thanks in advance - you guys fantastic and this website has been my salvation!

Gentle hugs,

Floss

4 Replies

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  • Hi Floss and thank you.

    As you know we are not doctors on here so we can't give advice on drugs etc.

    Check with your GP about the low dose Aspirin, ask if that could that be triggering the asthma.

    Great news that you are seeing Prof Hughes. Make sure you take a complete, bullet point, list of all symptoms, etc and give him a copy to keep.

    Best wishes and let us know how it goes.

    Dave

  • You have already been given some great advice, and good you are pushing for a more detailed and knowledgeable assessment, that is the key to joining the dots. It would not harm to email the secretary to your GP the full website to Hughes Syndrome Foundation, and also the pinned posts regarding Seronegative Hughes Syndrome, although of course the previous positive test results are telling! MaryF

  • I once had mild asthma. It went away when a local book store opened up the first espresso based coffee shop in our area. My then GP noted my asthma improvement and correctly guessed that I was drinking espresso coffee. He then whipped out a note pad and, while drawing diagrams, explained that the coffee bean has a phytochemical which is an airway anti-inflammatory, but this chemical (forgot the name?) was only released at the high temperatures of espresso -- regular brewed coffee does not contain much of this respiratory anti-inflammatory. And yes, the doc told me, the good stuff is also in decaf espresso -- though not "quite as much, its still there."

    Do check with your GP in case the asprin is causing additional breathing problems. That can happen. And good luck!

  • Always make sure you take a list of symptoms with you, write it all down as colleges say......it's never too much to take, better to have & cover all areas.

    You are seeing a great doc & I'm almost sure you'll be thoroughly checked & you'll get the diagnosis you're after, all the best, let us know how you get on, Suzy

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