Antiphospholipid Syndrome

Antiphospholipid Syndrome, General Information, Invisible Illness, Main Blog, Overlap Diseases

Antiphospholipid Syndrome (Also known as Lupus Anticoagulants or Hughes Syndrome)

What is antiphospholipid syndrome?

As if receiving a diagnosis of lupus is not complicated and scary enough, being diagnosed with something called antiphospholipid (pronounced An-ti-fos-fo-LIP-id) syndrome (APS) can be even more confusing and scary. We hope this blog can shed some light on what antiphospholipid syndrome is, how it relates to systemic lupus erythematosus, as well as how it is diagnosed, treated and managed.

Simply put, antiphospholipid syndrome (APS) is an autoimmune disorder that is characterized by excessive clotting of blood in the arteries and veins.  Usually, blood clotting happens naturally as the body’s response to cuts and scrapes, and small breaks in blood vessels. In APS, a tendency for excessive clotting can constrict or even block blood flow and end up damaging internal organs.

There are two main types of APS:

*Despite these two categories of classification, the research indicates little difference between them.

How it works:

 

Are there any alternate names for APS?

To make things even more confusing, this syndrome often goes by several different names. Here are some of those names and explanations as to why they are used instead of APS:

Hughes syndrome: In honor of the doctor who first described it.

Lupus anticoagulant: Many people use this name, however, it is not actually the name of the syndrome, but rather describes the anticoagulants (the substances that prevent the clotting of blood) that are found in large quantities in those with APS. Lupus anticoagulant antibodies are a bit confusing, because despite their name (anticoagulant refers to a substance that prevents clotting), these antibodies actually promote abnormal clotting. These antibodies are a type of antiphospholipid antibody that attack the lipids (fats) in the lining of cells. Most often, lupus anticoagulants are found in people with diseases such as systemic lupus erythematosus (SLE), but can also occur if you take certain medications, or have conditions such as inflammatory bowel disease (Crohn’s disease or ulcerative colitis), certain infections or certain types of tumors. About 50% of people with SLE have these antibodies, however, they are also found in healthy people.

Phospholipid antibody syndrome (aPL antibodies): Less commonly used, Phospholipid antibody” syndrome rephrases the “antiphospholipid” part of antiphospholipid syndrome. Phospholipids are a class of lipids (molecules) and are a majorcomponent of all cell membranes.
 

What are the signs and symptoms of antiphospholipid syndrome?

 

When should I see a doctor?

If you have an autoimmune condition like SLE, speak with your physician about whether or not you should be tested for antiphospholipid antibodies.

If you are experiencing any of the following symptoms, please seek medical attention immediately:

*If you are pregnant and experience spotting or bleeding, this may be a sign of a miscarriage or other pregnancy complications. If you have suffered from several miscarriages or severe and unexplained complications during pregnancy, it could be related to antiphospholipid syndrome.
 

How are you tested for antiphospholipid syndrome?

Blood tests are used to make a diagnosis for APS looking for at least one of these following antibodies in your blood:Antiphospholipid Syndrome

  1. Lupus anticoagulant
  2. Anti-cardiolipin
  3. Prolonged PTT
  4. Beta-2 glycoprotien 1

A diagnosis will be confirmed after the antibodies appear in your blood at least twice in tests that are taken at least 12 weeks apart.
 

What causes APS?

Like most autoimmune diseases, the definitive cause of antiphospholipid syndrome remains unknown. What is known is that the body produces antibodies that target the proteins that bind the phospholipids (a type of fat that is in your blood that plays a key role in clotting). The antibodies normally attack the invaders like viruses and bacteria, but when they behave incorrectly and begin to attack the phospholipid-binding proteins, your body may then begin to clot abnormally.

Three factors that may be associated with developing APS are:

  1. Infections: Infections like HIV, syphilis, Hepatitis C, Lyme disease do have a higher incidence of having antiphospholipid antibodies.
  2. Medications:  The antibiotic amoxicillin, hydralazine taken for high blood pressure, quinidine which is taken for regulation of heart rhythm, and an anti-seizure medication called phenytoin may lead to a higher risk for the development of antiphospholipid antibodies.
  3. Genetics or Heredity: Research indicates that relatives of those with antiphospholipid syndrome have an increased likelihood of having the antibodies themselves, even though the disorder is not considered to be hereditary.

 

What is the treatment for APS?

The treatment plan will be specific to the individual and their current health status with regards to the APS symptoms that they are experiencing. Ideally, any treatment regimen will be directed towards thinning (anticoagulating) the blood to prevent clotting.

Here are some medications (anticoagulants) used to treat APS and prevent blood clots:

Things to note if you are taking anticoagulants (your blood may not clot as easily so it is best to avoid injuring yourself and avoid bleeding):

*It is very important to speak with your physician about any other medications or supplements that you are taking as they may cause the anticoagulant medications to be less effective or interact in a dangerous way with your anticoagulants. Also ask about any dietary restrictions that can either increase or reduce the medication’s blood-thinning effect.
 

Can I do anything to prevent the development of antiphospholipid syndrome?

Even if you have the antibodies associated with APS, there are things you can do to reduce the risk of developing blood clots or any other signs or symptoms.

Things you can do to reduce the chances of developing blood clots:

The risk of developing clots increases if you:

In Conclusion

While there is no cure for antiphospholipid syndrome, there are very successful ways to manage and treat this condition. If you are diagnosed with APS, be mindful of any symptoms that are new to you, keeping good medical records with dates and descriptions of symptom activity. Clearly and regularly communicate with your medical provider about your responses to the medications as well as your general wellness. This will help you and your physician devise the optimum course of action and make necessary adjustments to reach the best possible outcome as well as to help prevent any further complications.

*All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
Sources: dnndesigner.com, about.com, nlm.nih.gov, nytimes.com, medicinenet.com, hopkinslupus.org, cdc.gov, medlineplus, webmd.com, genome.gov, mayclinic.org

 

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Article by : Karrie Sundbom

Karrie is the Digital Marketing Manager at Molly's Fund and responsible for innovating content for all of Molly's Funds online communications, creating memes and graphics, writing the MFFL Newsletter and main lupus blogs, as well as developing and managing the content for all of our social media platforms. Connect with Karrie on LinkedIn and Google+ .
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