Patient Comments: Antiphospholipid Syndrome - Symptoms

What were your symptoms associated with antiphospholipid syndrome?

Comment from: capesha11, 25-34 Female (Patient) Published: October 11

When I was 33 I was hospitalized with a DVT in my left leg and multiple PE's. First hematologist said it was from my birth control Due to the fact that I didn't have any other predisposing factors. So I was taken off of my birth control. Then my menstrual cycles were lasting 30 plus days at a time. I started having headaches everyday Went to a neurologist had an MRI of my brain done which showed that I had had a TIA at some point as well. Was able to get into a different hematologist who later diagnosed me with antiphospholid syndrome a year and a half after I was hospitalized.

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Comment from: OB Nurse, 45-54 Female (Patient) Published: June 01

I was diagnosed with antiphospholipid syndrome at age 24 when I suffered a stroke 10 days post-partum on my right side. Before that, I was never sick and my prenatals were all in order. I didn't have a very proactive OBGYN and didn't even test for anything until it was long past the incident. I recovered well, and when I was pregnant with our second child, I changed OBGYNs and a maternal fetal specialist diagnosed me when I was 15 weeks. I was started on Heparin injections three times a day in my stomach and legs for the entire pregnancy until I had a 75% placental abruption at 34 weeks and nearly lost our baby. After that pregnancy, I had my tubes tied and considered myself blessed. I will have to take a baby aspirin once a day for the rest of my life, but I have not had any other problems since.

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Comment from: 65-74 Male (Patient) Published: August 20

My APS diagnosis occurred only after 3 blood clots in my left leg and the coughing up of blood. A CAT scan revealed my mitral valve collapsed causing the blood loss. The valve was replaced by a titanium valve. I was then diagnosed with APS. The APS also caused petite & grand mal seizures which persist to this day notwithstanding the usages of 3 different types of meds for the same. I must retain an INR level between 3.0 & 4.0 to control the APS & take 12 MG of Coumadin daily & obtain bi-weekly blood tests.

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Comment from: Madasheck, 35-44 Male (Patient) Published: June 18

I had arthroscopic shoulder surgery a few months ago. About three days after surgery, I developed a sharp pain in my right calf that would not go away. Turned out to be a DVT behind my knee. Spent a week in the hospital for that and went home on a Sunday afternoon. Later that evening, I had pain in my right side and also had serious trouble breathing. Part of the DVT broke off and went to my right lung, and the pain was excruciating at times. I called 911 for myself. First blood test for antiphospholipid syndrome (APS) was positive. I just recently had a second blood test that also turned out positive for antiphospholipid syndrome (APS). My hematologist said that I will be on Coumadin/bloodthinners for years or the rest of my life. I am also uninsurable now at the age of 44.

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Comment from: Lew, 55-64 Male (Patient) Published: March 07

At 38 suffered a major heart attack, the doctors could not explain the causes as my arteries and veins were clear...something that mirrored my father's fatal heart attack. I then went on to have 2 'small' attacks followed by a couple of DVTs and then gangrene in my left toes. At the point that the doctors determined that I had a high chance of more ''events' they decided to insert a defibrillator into my chest, this is when my PT/INR started looking fluky with my clotting time being infinite (the APS negated the reagent used to make the blood clot at a known pace) and led to a trip to the hematologist and the discovery of my APS. I have since had a heart transplant and several TIAs. Symptomatically when I am having a 'flare up' I will feel physically ill (flu-like), experience burning muscle pains, fatigue and possible headaches.

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Comment from: Wendy, 65-74 Female (Patient) Published: January 07

Went to the doctor with toes turning black and extreme pain in them. While in hospital they found two clots in my lungs also a clot in my arm which is in a vein so not a big worry apparently. They did blood tests on two occasions and it proved I had APS. It is now 6 months later and my fingers are on fire the pain is unbearable and no one knows how to treat it except to keep my INR between 3@4 which I do.

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Comment from: Tiffany, 55-64 Female (Patient) Published: October 25

I was diagnosed with APS about 15 years ago. I was having significant migraines. I take aspirin and 200 mg of plaquenil a day and an aspirin. I am wondering if I should continue to take the plaquenil after all these years. The symptoms have subsided although I still get migraines, especially the auras. I do not have insurance or much money so I cannot go to a rheumatologist and I get my refills from a family doctor. If I stop taking plaquenil, do I have to wean myself off slowly? I have developed tinnitus and some hearing loss.

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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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