Patient Comments: Antiphospholipid Syndrome - Symptoms

What were your symptoms associated with antiphospholipid syndrome?

Comment from: Marso, 45-54 Female (Patient) Published: August 29

I was diagnosed with double pneumonia 2 weeks ago while on holiday. I was given intravenous antibiotics and intravenous steroids while I was in hospital, now I am home I still have a high temperature.

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Comment from: NewTestsNeeded, Female (Patient) Published: August 23

There is a subset of antiphospholipid antibody syndrome (APLAS) which does not entail a tendency to form clots, but rather causes scarring of one or more heart valves, miscarriages, and premature births. Were someone given blood thinners solely on the assumption that all APLAS patients are in danger of clotting, then the question arises if heparin and other drugs, such as aspirin, could degrade or impair endothelial cell-to-cell junctions, as distinct from the optimal clotting factors, resulting in a catastrophic bleed. It is terrifying that assays of endothelial barrier permeability are not yet translated from research labs into clinical use, and yet APLAS and hypertensive patients are prescribed these drugs without any assessment to quantify and assess endothelial barrier function.

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Comment from: sonia, 65-74 Male (Patient) Published: November 17

My daughter was treated for thyroid problems but the doctor stopped medicine for thyroid and started her on steroids. She lost her immunity and suffered and developed acute respiratory distress (ARDS) with difficult breathing. She was admitted in hospital and she was given antibiotic but she did not recover and finally expired 25 days after admission. We spent more than 20 lakhs of rupees, but of no use. Her small children are without their mother.

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Comment from: 55-64 Male (Patient) Published: November 20

The antiphospholipid syndrome (APS) that I've had my entire life (I'm now 57) has caused 8 blood clots, 4 in the left leg, 1 in the right leg, 1 in the brain that caused ischemic stroke, 1 that traveled through the valves of my heart causing a heart attack and the last one broke free and traveled all through my body causing a TIA (transient ischemic attack). I've had a massive cerebral hemorrhage caused by a ruptured aneurysm. I have epilepsy and hypoglycemia (low blood sugar), I have protein S deficiency. I'm a willing volunteer in any types of studies on APS. Maybe someone could find some type of link to the above.

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Comment from: veronica, 35-44 Female (Caregiver) Published: August 20

My daughter has antiphospholipid syndrome and is having such a hard time with her periods. The amount of blood she loses is amazing and this goes on for weeks she has been told she has a venous infarction in her brain but no one has said it has to do with the antiphospholipid syndrome.

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Comment from: sadsap54, 55-64 Female (Patient) Published: May 14

I was diagnosed with antiphospholipid syndrome in 2010.My doc noticed some wonky levels in the blood test and sent to a hematologist. I was lucky to carry three pregnancies, but had 3 miscarriages. Was just in hospital for 3 days, with this syndrome my blood is thicker and holds onto triglycerides. My current level is 691. Am on all the meds they can think of and have been following a nonfat diet for years, so hoping switching meds around will help.

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Comment from: Lindyloo, 35-44 (Patient) Published: May 09

I 44 now but was diagnosed with lupus at 19 then went on to have 5 miscarriages, no live births. Then they tested me for Antiphospholipid since them I have suffered multiple TIAs over the years, eye surgery due to bleeding caused by clots, epilepsy, migraines and I have been on warfarin that the doctors are unable to stabilize due to an unrelated platelet defect. I had a stroke 5 weeks ago. But what I'm trying to find out is there any other treatment available.

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Antiphospholipid Syndrome - Cause Question: What was the cause of your antiphospholipid syndrome?
Antiphospholipid Syndrome - Effective Treatments Question: What kinds of treatment have been effective for your antiphospholipid syndrome?
Antiphospholipid Syndrome - Tests Question: Describe the tests you've had to detect antiphospholipid antibodies and antiphospholipid syndrome.

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