Patient Comments: Antiphospholipid Syndrome - Symptoms


What were your symptoms associated with antiphospholipid syndrome? Submit Your Comment

Comment from: dsr0529, 55-64 Female (Patient) Published: February 29

With antiphospholipid syndrome (APS) is there a tendency for your knees and lower calves to swell and throb. I have always had a history of migraines. Iron deficiency anemia along with APS was diagnosed in 6/15. I am currently on Xarelto. I continue to have migraines. My current concern is the swollen knees, dry skin and thin nails. I am taking biotin. I see my hematologist in 1 month.

Comment from: my granson, 25-34 Female (Patient) Published: February 03

As a baby whenever he was ill he always broke out in cold sores in his mouth and on his hands. Now since he has been at school he has been getting seizures, where he would freeze and stare for a few minutes and quite often vomit after. Now he has just spent a few days in hospital as he had a full blown seizure where the full body was shaking. He has had all the tests i.e., brain scan, lumbar punch, EEG, and they were all clear. They did say he had a sinus infection so he had antibiotics for a few days, but still can’t get to the bottom of it. It is very worrying and horrible to see a child go through this, and still not knowing what the cause of it is.

Comment from: RFK, 65-74 Male (Patient) Published: September 10

I was diagnosed with antiphospholipid syndrome (APS) 23 years ago, after coughing up blood on numerous occasions. APS led to a mitral valve replacement and firstly I had heavy dosage of Coumadin and more recently heavy dosage of heparin as I still get blood clots. Shortly after the valve replacement I started having grand and petite mal seizures and am now on 2 types of seizure medication, although the seizures still occur. I am now scheduled to have electrodes implanted in my brain to determine from which area of the brain they emanate and possibly burn out that site to end the seizures.

Comment from: Helpless and tired, 45-54 Female (Patient) Published: April 30

Ten years ago I started having mini strokes and before that I had a total of 4 miscarriages and 1 stillbirth. I still have no answer to what was going on, but I do have 2 living children and during both of those pregnancies my platelets dropped to dangerous levels. Now after 2 years of mini strokes (transient ischemic attacks), finally I had a real stroke. It has been over 7 years with antiphospholipid syndrome, and now with extreme fatigue, weakness in muscles and occasional joint stiffness, I am having symptoms of mini strokes again, but no signs of new strokes yet, migraines continue. Wishing I could find a specialist to help!

Comment from: sadlady, 45-54 Female (Caregiver) Published: December 19

In 2003 my husband had a stroke, first they said Bell’s palsy, then brain tumor, then stroke, ok… In 2003 while doing IVF (in vitro fertilization) for three years, he got a DVT (deep vein thrombosis) in his leg, which shot to his heart. I never thought about the toe issue of gout. He was moving along, healing every day, and then out of nowhere, there was a brain bleed and seizure, he was in hospital for 135 days, day by day, seizure, intubated, strapped down, not speaking; the most horrible thing you could watch the man of your dreams go through. He finally came home, not the same but he was home with us. Then not 9 months later after Rituxan, plasmapheresis, Lovenox every 12 hours, IVC (inferior vena cava) filter, there were clots everywhere, he was home. Three weeks ago he had a heart attack, just a month after his mom passed. Now I am back at square 1.

Comment from: Nausicaa, 35-44 (Patient) Published: April 10

I was given from the emergency room, a sling and strap around my torso to immobilize my arm after my collarbone was broken. The next day I went to an orthopedic doctor. He put me in a figure eight. He advised against surgery. I'm having problems with my hand going numb.

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.

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.

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: 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.

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.

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.

Comment from: Sunshine, 25-34 Female (Patient) Published: March 20

Although I have not been treated for this disease it has been diagnosed in myself. When I was 17 I had my first child who was born at 27 weeks gestation, she is now 16 and very healthy. At that time the doctors could not find a reason for the preterm delivery. 7 years later I conceived again and had a miscarriage, a few months later I found out I was pregnant again, and lost that baby also. My doctor then decided to run some test. The test revealed that I had Lupus and APS. A few months later I was pregnant again, which was told I needed to contact my Dr. immediately if I became pregnant, the doctor put me on Heparin shots twice daily and I delivered a healthy baby boy at full term and also had another child two years later on the same regimen. My lupus has been in remission for a long time and I consider myself pretty healthy. Although the APS is not treated and it often worries me because I have no health insurance.

Comment from: Annasor, 45-54 Female (Patient) Published: March 07

While I was pregnant with my son in 1985 I had allot of TIA's, mini strokes, I then had my first stroke a few months after giving birth to him. While I was in the hospital following the stroke they found more things wrong, heart valve problem they thought the reason I had the stroke was because I had thrown a clot due to false positive endocarditis. Went on for 6 years and had another stroke. It is then I was diagnosed with Lupus Anticoagulant, Antiphospholipid Syndrome. That is when they added Coumadin to my daily medicines. I am still finding out about all the things that are related to this syndrome. Please let me know what other symptoms you all have had so I can understand what might be related.

Comment from: rpope1, 55-64 Female (Patient) Published: October 25

APS has only attacked one area of my body, my left foot. When I had a severe Bunion on this foot and all the bones from my toes stuck down I had my first attack. My foot literally felt like it was on fire. I went to the emergency room and they told me it was all in my head (even though my foot was beet red)! I went to Vein specialists who all noted I had "good veins". A blood test revealed the APS. After the burning there were black areas on my foot that looked like it had been beaten. After that, those areas blistered. Recently, I had ANOTHER attack and it showed up in the Big toe on this same foot. Right before a scheduled foot operation the toe turned purple and became greatly inflamed. It felt like a raw blister. They cancelled my foot operation and had me go to the emergency room for Doppler Ultrasounds on my arteries and veins in this leg. Again, the veins were fine. Then I saw a Hematologist who kept telling me it was the veins and after much protesting he put me on a good dose of Lovanox. Within twelve hours my purple toe turned a mild red and all the other discoloration in my foot disappeared.

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.

Comment from: Catmom9, 45-54 Female (Patient) Published: December 08

I fell down stairs landing on my tailbone about 12 years ago. I was told there was nothing that could be done for it and I was not even offered an X-ray. I still have a great deal of pain. I sit on 2 cushions while working.


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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.

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.

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.

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 [email protected] which I do.

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.

Comment from: nanapat1, 65-74 Female (Patient) Published: August 12

I've had seven pregnancies with 3 live births, no one knew the reason, but later when I had a deep vein thrombosis my doctor sent me to a hematologist who identified antiphospholipid syndrome. Since then, I was put on coumadin for a year. Doctor thought it was okay to take me off, then I had breast cancer and during chemo had another blood clot - because 10 years had passed I was taken of coumadin after a year. Wound up with another blood clot, this time in heart, now on coumadin for life. But I'm doing well and still alive!

Comment from: Concerned friend, 55-64 Male Published: April 27

My friend is in the hospital with catastrophic antiphospholipid antibody syndrome. He bled into his adrenal glands and retroperitoneal area. He then ended up with a large DVT because he was taken off of coumadin. He now has thrombocytopenia and is receiving platelets. The doctors said he was in renal failure once which he recovered from. He has been dehydrated a few times and very edematous. He has developed an infection at an IV site. He also received a number of blood transfusions for low blood counts. This hasn't even covered all of what he has gone through. He still is in the hospital and may be transferred to another facility.

Comment from: Bella, 35-44 Male (Caregiver) Published: April 14

My dad has antiphospholipid syndrome, and the doctors put him on those warfarin tablets, but they caused his brain to bleed and he had a stroke. The doctors took him off warfarin and he recovered from this. About six months later he went into the hospital again. He had blood clots all through his lungs but they did a surgery on him to help prevent the clots. Then a few months after that he had a seizure because of the brain bleed, I'm guessing, and it damaged his back - he had cracked a vertebrate. He's unable to drive but is at home and still working. He's very lucky.

Comment from: joyce, 35-44 Female (Patient) Published: March 14

After I had my daughter 12 years ago I was having mini strokes a couple of times a month for almost a year before they could figure out what was wrong with me. I was only 29 so they didn't even consider I was having strokes until I lost feeling on my left side of my body. I have gained alot of the feeling back but never the same. I'm healthy now and take Warfarin daily. I did lose a pregnancy a few years ago and am not able to have any more but life is good.

Comment from: scared429, 35-44 Female (Patient) Published: March 11

I have had one child and three still births and wasn't diagnosed with antiphospholipid syndrome until my kidneys failed in 2009.