mm5057's Journal

Blood Clots in Lupus Patients

Lupus can cause arthritis, rashes, and kidney damage. It can also cause blood clots such as strokes or clots in the lungs (known as “pulmonary embolism”). People with lupus experience blood clots more often and at a younger age than those without lupus. Such clots can have long-lasting consequences including paralysis from a stroke, recurrent miscarriages, and can increase the risk of early death. Treatment sometimes requires life-long medication with a blood thinner (such as warfarin), which carries the risk of bleeding. Clearly, we need to improve our ability to identify which lupus patients are at greatest risk for having a blood clot in order to take the appropriate preventive care measures.

We know about certain risk factors already. For example, lupus patients who have blood clots test positive on blood tests for “anti-phospholipid antibodies” or aPL. However, not all people with lupus who experience blood clots have positive aPL blood tests and not all patients with these positive tests have a blood clot. This is our best clue so far, but it is still very imperfect. Our research group is studying LOS participants and others in the UCSF Lupus Genetics Project to better understand the factors that contribute to blood clots.

In a study just published in The Annals of Rheumatic Disease, we found that the following factors increased the risk that a person with lupus would have a blood clot: smoking, older age at lupus diagnosis, having had lupus kidney involvement, having taken strong lupus medications such as cytoxan, and having had lupus for many years. Many of these findings, such as the strong medication use, having had lupus for a long time, and having had kidney involvement, may just suggest that patients with more severe lupus are at higher risk for having a blood clot. These findings do not mean that these strong medications themselves cause the blood clots and patients should not avoid these potentially life-saving medications. Rather, this suggests to physicians that we need to aggressively manage lupus patients with such severe disease manifestations.

However, at least one of these risk factors – smoking – is modifiable. We already know that smoking makes many aspects of lupus worse, and this is just another reason for patients with lupus not to smoke.

Interestingly, we also found that patients who had taken hydroxychloroquine, or Plaquenil, had a lower risk of experiencing a blood clot. Lupus patients are often on this medication because it also helps to treat arthritis and rashes, so the fact that it may help to prevent blood clots is an encouraging discovery.

Our research group is now trying to determine if certain genes put lupus patients at greater risk for blood clots. As with many aspects of lupus, ethnicity also seems to influence a lupus patient’s risk of clots, and we are currently studying these differences across several ethnic groups, including Caucasians, African-Americans, Asian-Americans, and Hispanics. If we can understand more about the risk factors for blood clots in lupus patients, we hope to be able to prevent such events from occurring.

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Lupus and Primary Care

Earlier diagnosis and aggressive treatment have improved survival for systemic lupus dramatically over the last several decades. When lupus was first studied, many patients died within 5 to 10 years of diagnosis; today, they have near normal life expectancy. Since people are living longer, taking care of the long-term complications of lupus and the other diseases that tend to increase with age have taken on new importance.

Research shows that seeing a rheumatologist on a regular basis improves outcomes for people with lupus, but frequent contact with your primary care doctor or internist is an equally important part of basic lupus care. In fact, those with systemic lupus are at higher risk than the average person for complications such as heart disease and cancer.

In this article, we describe some topics that are important to discuss with your primary care doctor: heart disease and stroke, infections, bone health and osteoporosis, and cancer. Since lupus is a rare disease, not all primary doctors will have experience with following lupus patients long-term. By publishing research in this field, we are trying to increase awareness of all medical professionals to the complications associated with lupus. We ask for your help in this mission as well.

Heart disease and strokes: Know the signs and get screened for traditional risk factors

People with lupus are at higher risk of heart attacks and stroke than the average person. The association between heart disease and lupus was first reported almost 40 years ago, when researchers found an increased number of heart attacks and strokes among women with lupus. Among women aged 35-44, those with lupus were 50 times more likely to have a heart attack compared to those without lupus (for whom heart attacks are extremely rare at these ages). Even among women aged 45-64, those with lupus had more than double the risk of a heart attack than women without lupus.

It is not clear yet why these heart attacks occur in such young women with lupus: some of them can be explained by the high blood pressure than can come with kidney disease or by the high cholesterol that can occur with steroid use. But these “traditional risk factors” do not seem to explain the whole picture.

The best strategy for reducing the rates of heart attacks in lupus patients is still unclear, and research in this area is ongoing. Until such information is available, however, it makes sense to be alert for the symptoms of heart disease and to be screened for the traditional cardiovascular risk factors.

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How can you stay heart healthy?

Preventing Infections: The Role of Immunizations

Common infections such as the flu and pneumonia can be significant problems for people with lupus, especially those receiving steroids and other drugs that suppress the immune system. One way to reduce infection is to lower the doses of these drugs, but clearly this is not always possible. Another important way to reduce infections is to make sure that you have received the appropriate vaccinations. Recent research has shown that vaccines are safe for people with lupus and that they do not cause flares of lupus activity. Most experts now agree that lupus patients should receive “inactivated vaccinations” recommended for the general population, including the flu shot and the pneumonia vaccine.

How can you protect yourself from infections?

Cancer screening

Some research suggests that people with lupus have an increased risk of cancers. Research into this complication is still ongoing, but preliminary data shows that lung cancers and blood cancers may occur at slightly higher rates in people with lupus compared to others. The reasons for the increased risk of these cancers in lupus are unknown, but theories include problems with the immune system failing to attack early cancer cells, or rare side-effects of medications.

How can you protect yourself from cancer?

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Bone Health: Get Screened for Osteoporosis and Prevent Bone Thinning

People with lupus are more likely to have a bone fracture, especially of the hip and spine, after minor trauma: almost 10% will break a bone at some point after their diagnosis. This is because of osteoporosis, or thinning of the bones. Osteoporosis can occur as people grow older, especially in post-menopausal women. People with lupus are at higher risk for osteoporosis because of chronic inflammation and frequent steroid use, possible early menopause, and because of low vitamin D levels that can occur from avoiding the sun.

How can you stay bone healthy?

Conclusion

Advances in the treatment of lupus have helped lupus patients to lead longer and healthier lives. As a result, screening lupus patients for risk factors for heart disease and stroke, osteoporosis, and cancer has become more and more important. By educating patients and their primary care doctors, we can continue to improve care and outcomes for people with lupus.

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