I have been diagnosed with APS in Oct... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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I have been diagnosed with APS in October 2013 and now also have mild lupus, are the following symptoms normal with APS, Migraines with aura

edgewater100 profile image
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miscarriage 34 years ago but no clots so far, dizzy, blood in nails, passing out, rash on big toes lacy like ,crossed vision, numbness in fingers and hands, extreme fatigue, and what has the treatment been for these symptoms, I am currently on plaquinil an aspirin and Advil for pain, have an appointment at Mayo soon.

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edgewater100
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Hello I was diagnosed with APS 4 years ago...gratefully I did not have clots nor suffer a stroke ... felt extreme fatigue and weakness, dizzy; occasional numbness...."foggy brain" (had to retire from a professional job)...and general malaise.....I am on Aspirin, and Plaquinil....I take Advil if I have a headache or have become over stressed....I was also later dignosed with Unspecified Mixed Connective Disorder.....I see a Rheumatologist every 90 days for blood work...

so far so good....my symptoms have gone away except for a mild malaise if I become over tired or "stressed"

Salty profile image
Salty

HI Edgewater,

They do not have any specific expertise at Mayo about APS. They do, however, have expertise about disorders of the autonomic nervous system such as postural tachycardia syndrome and neurocardiogenic syncope which can occur due to lupus and/or APS. These disorders cause extreme fatigue, dizziness and passing out. You should request to see Dr Paolo Sandroni while you are there if possible. She is an autonomic neurologist. Migraines, including severe migraines, are common in APS and if aspirin is not helping then you might benefit from plavix and if that is not helpful then a trial of heparin-- the so called "heparin therapeutic trial" that Dr Hughes recommends. This is a 2 or so week trial of daily heparin shots to see if it helps your symptoms. If it does, then the next step is usually to switch to warfarin.

MaryF profile image
MaryFAdministrator

You have some good localized advice going on above, so hope you get some good results, let us know how you get on. MaryF

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