Anyone have experience with Antiphospholipid syndrome (APS)?

Posted by skymya @skymya, Feb 19, 2018

Last year on May 18 I had at least 2 heart attacks, blood clots, rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. Am having a hard time dealing with the memory loss and other issues that noone i know really understands as they have not been there. I now have an irregular heart beat, beats to fast tachycardia and APLS. It was finally confirmed this week I do have APLS. There's a good chance i have had it since at least 2000. I have had a few warning signs like livedo reticularis (were my skin looks purple and mottled all the time) had preeclampsia with oldest daughter, or placental insufficiency with youngest, preterm births (last two kids) migraines and of course blood clots( at second child birth). At this time there is no cure and only treatment is blood thinners. I would love to talk to others who have this also.

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Hello @skymya – I found some information on the Hughes Syndrome (antiphospholipid syndrome or APS or APLS) in the Pharmaceutical Journal: Antiphospholipid syndrome: pathophysiology, diagnosis and treatment

I'm tagging the two members who discussed APLS to see if they have any information to share with you. @soitis4590, @lena999 can you share any information on APLS with @skymya?


I have Primary APS. In addition to that, I have the following…Factor V Leiden, Elevated Factor V, Activated Protein C, Mixed Hyperlipidemia, and Hyperhomocysteimia.


Hello @georgiagirlrelocated — Welcome to Connect. I'm glad you found us. I did find some treatment information on the Mayo Clinic website here:

I'm tagging other members who have talked about Antiphospholipid syndrome in other discussions in hope they will be able to share any information they have learned with you. @skymya, @soitis4590, @taogirl2, @colettehellerud, @lagata, @lisaa, and @lena999 do you have any information you can share with @georgiagirlrelocated ?

@georgiagirlrelocated are you looking for any specific information that you are able to share?



Does anyone have medical advice on APLS causing migraines for 40 years? 24/7


Hi Amber how are you doing? My daughter is being tested for this disease presently. She has had two miscarriages, she first had an almost normal pregnancy, then one miscarriage at 9 weeks and a still birth at 20 weeks. Her dr didnt test for the disease until she got pregnant now and he did the gentic test and she came out with positive for the antibodies. Sh eis taking levanox and aspirin , she is only 9 weeks pregnant now. How are you and can you share your experiences with me? I hope the best for you, with warm regards, Elaine1809


Hello, is anyone caring for APS syndrome? For young teenagers?


Hello, is anyone caring for APS syndrome? For young teenagers?

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Hello @brendamorales1, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. @elaine1809 @soitis4590 and @colettehellerud have discussed Antiphospholipid syndrome and may be able to share their experience.

While we wait for other members to share their experience with you, the following articles may provide some answers to your questions.
— Top 10 Points Patients And Families Should Know About Pediatric Antiphospholipid Syndrome:
— The Differences Between Childhood and Adult Onset Antiphospholipid Syndrome:

I am sure this has to be difficult for you. Are you able to share how your teenager is handling or coping with the diagnosis?


Hello, I am unsure if you still use this form but if so I do as well have APS and am 20 years old. I do as well reside in Fargo. I was wonder how your daughter is doing? Has she has any other issues since then? How did they discover the clot, did they just do a d-dimer? I am in constant worry of experiencing a clot and would really love to connect with you or your daughter on this issue.


Hi! My name is Lynne and I have been diagnosed with Antiphospholipid Antibody Syndrome since 1994. I also have other autoimmune disorders to go along with that. I was diagnosed after 3 second trimester pregnancy losses. My doctors, Dr. D. Wallace. and Dr. Rosenberg, rheumatology and hematology respectively at Cedars Sinai, Los Angeles, planned for high dose prednisone, ASA, and injected heparin to preserve the next pregnancy. To no avail and I went on to have 3 more losses. This was devastating and, to this day, I blame myself. I now live on the other side of the country and have had to get all new docs. The past 3 years have been kind of rough with colitis and Sjogren's Syndrome being diagnosed on top of what I already had on my plate.

This past year has been really harsh with severe stomach issues, TIA's and falling on my butt at least 3 times a week. My joints are shot and have started down the road to joint replacement surgery. Which I have already broken my left shoulder replacement!!!!

Anyway, I've been hospitalized 3 times this year. How lovely, but life goes on. So far, I've been pretty lucky with no catastrophic events. Let's hope it stays that way for all of us.

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