Sticky Blood, Hughes, APS
By A. G. Moore 5/27/2013
Microscopic Image of a Thrombotic Event
Image by Nephron
In Public Domain on Wikimedia Commons
What is “sticky blood”, also known as antiphospholipid or Hughes Syndrome? “Sticky blood” is a descriptive term for what happens when the blood has the tendency to clot. According to the National Human Genome Research Institute, 30- 40% of the people who have SLE test positive for the aPL (antiphospholipid) antibody. People with other autoimmune disorders, such as myasthenia gravis and Graves’ disease, also may test positive for this antibody.
Having the antibody in itself does not indicate that the potential for thrombosis (blood clot) is elevated. About 5% of healthy, asymptomatic people have the aPL antibody floating around in their blood. It is believed another element, an antagonist, has to be present in order for the clotting disorder to develop.
An article on Patient UK suggests what the antagonist might be. The list of possible instigators includes: “complement activation,…the presence of prothrombin, protein C, protein S, activation of platelets, activation of vascular endothelium, and a reaction of antibodies to oxidised low-density lipoprotein”. So, as doctors look for the aPL antibody in someone they suspect of having APS, they may also look to see if any of these other factors are present.
What exactly does having APS mean? The answer to that question varies. The National Genome Research Institute describes three classes of people who have APS. In the most benign situation, a person may test positive for the syndrome but not have had a clot or any other difficulty associated with the disorder. In this case, a doctor will generally recommend a lifetime regimen of low-dose aspirin to guard against clotting. In some women, having APS means they may have trouble carrying a pregnancy to term. In this case, both a rheumatologist and an obstetrician may be consulted and anticoagulant therapy instituted (for pregnant women, Patient UK recommends heparin rather than warfarin). In the third class of APS patients, those who have had clots, lifetime treatment with an anti-coagulant may be recommended.
How is APS diagnosed? Diagnosis is based on both observation of clinical symptoms and blood tests. The presence of some specific autoantibodies suggests APS: lupus anticoagulant (LA), anticardiolipin and anti-b2-glycoprotein I antibody. There are specific guidelines which describe what a significant titer is for each autoantibody and how often a doctor should test for that antibody in order to confirm diagnosis. In some cases ultrasound studies, CT scans or MRIs may be ordered.
Clinical symptoms which may indicate the possibility of APS include multiple blood clots, especially deep vein thrombosis, and several miscarriages.
Who gets APS? As with most autoimmune disorders, APS tends to run in families. Demographically, Caucasians are less likely to get it than are some other groups; women are also more likely to have it; and the disorder is seen less commonly in the elderly.
How do people learn they have APS? If you have lupus, this is one of the conditions a doctor is likely to test for. If you don’t have lupus, but have had several miscarriages, especially late-term miscarriages, a doctor will likely test for APS. And if you have a blood clot, particularly repeated blood clots, APS may be suspected and tested for.
Why three names: APS, sticky blood and Hughes Syndrome? This one is simple to answer. Sticky blood is a descriptive name which helps non-scientists to understand the syndrome; APS because the antibody causing all the trouble is the antiphospholipid antibody; Hughes Syndrome because back in the 1980s, Dr. Graham Hughes in the UK made significant contributions to the understanding of APS.
So what do you do about it if you have APS? The good news is, healthy living can be helpful. All those behaviors which can decrease the risk of clotting are encouraged. These include stuff we know about: exercise; smoking cessation; keeping the weight down; consuming alcohol judiciously; avoiding foods that cause elevations in the “bad” blood lipids and trying to get a handle on hypertension and diabetes.
In the end, APS is just a name–or three names. The diagnosis is one of many you might receive whether you have lupus or not. If APS is making you sick, then you have to take it very seriously and treat it. Because untreated it can steal your life. But, if APS is not making you sick, then, in a way, you’re lucky to find out that you have it. Because now you can try to prevent clots.
Whether APS is making you sick or not, you should know what your lab results are and you should read up on the subject–follow the threads I have linked to in this article and go even beyond that. As with every medical issue, your best chance for living well with APS is achieved by working responsibly with care providers to design a path forward.