Frequently Asked Questions about Antiphospholipid Antibody Syndrome (APS)

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  1. Antiphospholipid Antibody Syndrome is described as an autoimmune disease, what does autoimmune disease mean?
  2. What are Antiphospholipid Antibodies?
  3. Are there different forms of Antiphospholipid Antibody Syndrome?
  4. What is Catastrophic Antiphospholipid Antibody Syndrome? 
  5. What causes Antiphospholipid Antibody Syndrome?
  6. How did I get these antibodies?
  7. Can you catch Antiphospholipid Antibody Syndrome?
  8. Is Antiphospholipid Antibody Syndrome a fatal disease?
  9. How common is Antiphospholipid Antibody Syndrome?
  10. Is the Antiphospholipid Antibody Syndrome hereditary, should my children be tested?
  11. If you have Lupus, does that mean you also have Antiphospholipid Antibody Syndrome?
  12. What is an INR and what range should it be kept at? 
  13. Do you recommend a home INR machine? 
  14. How long do I need to take Warfarin? 
  15. Can I eat Vitamin K rich foods?   
  16. What lifestyle changes must be made to accommodate Antiphospholipid Antibody Syndrome?
  17. Why is Antiphospholipid Antibody Syndrome difficult to diagnose?
  18. What are the aCL, LA, beta2 glycoprotein1 tests?
  19. Do all Antiphospholipid Antibody Syndrome patients have the same symptoms?
  20. Does taking Aspirin or Warfarin affect the test results?
  21. Can a cold or virus affect the test results? 
  22. What type of doctor(s) should I see? 
  23. What is an anticardiolipin antibody? 
  24. How do doctors test for antiphospholipid antibodies?
  25. What kinds of problems can occur in patients with APS?
  26. Does APS turn into Lupus?
  27. What is an anticoagulant?
  28. What kinds of treatments are available for APS?
  29. What is a DVT?
  30. What is a PE?
  31. What is the Lupus Anticoagulant? 
  32. What is an antibody?
  33. Does APS cause high blood pressure?
  34. Can APS antibodies wax and wane?
  35. My INR is low and I have re-clotted while on Coumadin. Should I take injections of LMWH until my INR is therapeutic again?<
  36. Can Coumadin/Warfarin cause liver damage?
  37. What should a Dr. do when an APS patient has an INR of 7.5 and their range is 3.5-4.0? Should they hold their Coumadin/Warfarin? Should they be given FFP or Vitamin K?
  38. What is the long term prognosis on the APS patient?
  39. Do you recommend INR machines for patients at home?
  40. What precautions would you give people who use home INR machines?
  41. Does APS go away?
  42. If my antibodies become negative, should my doctor stop my anticoagulant?
  43. I am positive for anti-cardiolipin antibody [ACL] but have never had a confirmed clot. What are the chances that I will clot in the future? And what kind of treatment should I be on?
  44. How long should you take baby aspirin and LMWH during your pregnancy? How long do should you take it after you have had the baby and why?
  45. I've been diagnosed with APS. What are your thoughts on nutrition and exercise to help with this condition?
  46. I'm ten and one-half weeks pregnant, and have had two prior miscarriages. I've had three separate tests showing elevated anticardiolipin IgM (the values were 11, 14, and 18), and my hematologist says that I have APS. But a perinatologist with whom I've just met says that the positive ACL IgM tests are not indicative of APS at all, and that only ACL IgG is related to APS. Now, I'm quite confused! Do I have APS, or not?
  47. I have been struggling with a number of symptoms for almost three months now. It started with a horrible marbley rash on my feet and ankles, with numbness and pins and needles in my arms and legs. I've also had mental fog and some other symptoms. Livedo reticularis has been diagnosed in my feet, I've had a positive ANA test, and I have these antibodies. Does this necessarily mean that I have APS?
  48. What causes Antiphospholipid Antibody Syndrome?
  49. I have APS, and I am wondering what my birth control options are. I realize that I can't take anything with estrogen--but what about the Mirena IUD and Micronor? Are those safe, since they are progesterone only? What other options can you recommend?
  50. Will having APS shorten my life? Will I be in any way impaired? Are there changes I should make in my life because I have APS?
  51. What are the chances of blindness with APS?
  52. Will my fatigue and brain-fuddledness be corrected [by treatment for APS] or will I be exhausted for the rest of my life?

This FAQ is adapted with permission by the Rare Thrombotic Diseases Consortium.
Some answers were also provided by members of our Medical Advisory Committee.

 

Page last update: 11/13/10

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