How to Manage Blood Clots When You Have Lupus
Last updated: March 2022
Lupus, also known as systemic lupus erythematosus (SLE), is a disorder that happens when your immune system attacks your own organs and tissues. Molecules called antibodies within your immune system normally detect and destroy foreign invaders such as bacteria and viruses. However, in lupus and other auto-immune diseases, the immune system turns on your body and attacks your own tissues.1
Lupus acts differently in different people, and it can affect multiple systems in your body. These include the skin, joints, kidneys, lungs, heart, brain, and blood cells. Depending on which systems of the body are affected, the symptoms of lupus vary from person to person.1
How does lupus affect your blood?
About 40 percent of people with lupus also have antibodies against certain proteins in the blood called phospholipids.2 This is called Antiphospholipid syndrome, or APS. This can make the blood flow poorly, which may lead to a variety of serious health problems, including blood clots, miscarriage, and stroke. Not everyone with APS has blood clots, though. Only about 15 percent of people with APS experience recurrent blood clots or pregnancy loss.3
Research on preventing blood clots
There is a lot of research underway to look at medicines for preventing blood clots among people with lupus. These are some of the key recommendations from recent studies:3,4
- The antimalarial, hydroxychloroquine, which is used more broadly against lupus, shows promise in preventing clots for people with APS and lupus. More research is needed, but early studies are promising.
- Aspirin shows mixed results for preventing clotting in the first place and it does not work to prevent a new clot once you have already had one.
- The blood thinner warfarin does not work to prevent clots among people with APS who have never had a blood clot, and it comes with safety concerns. For example, it can make the blood too thick or too thin, so you need frequent blood tests to check. Also, warfarin can cause birth defects in pregnant women.
- For people who have already had a clot (which means your blood is more likely to clot again), warfarin seems to be a good choice, though it is important for health care providers to watch your blood carefully.
- If you have had a kidney transplant, warfarin may be the best option, plus it seems to make a transplanted kidney less likely to fail.
- There is no evidence that oral blood thinners like rivaroxaban and dabigatran work to prevent clots. In fact, one study showed that rivaroxaban led to more bleeding, clotting, and even death, compared to warfarin.
4 tips to prevent blood clots
In addition to taking the medications recommended by your health care providers, there are other things you can do to help prevent blood clots. These include:5
- Wear compression socks if you have had a deep vein thrombosis (DVT). Also avoid sitting still for long periods, like on airplanes.
- Don’t smoke.
- Reduce your risk of clots from other problems, such as heart disease, by starting an exercise program and avoiding fatty foods.
- If you take Coumadin® (warfarin), it is important not to eat foods or take other medicines that can interfere with its functioning.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?