"It's a very promising time in lupus research. It's reminiscent of where rheumatoid arthritis was 10 to 15 years ago when many patients ended up in wheelchairs. I don't see many rheumatoid arthritis patients in wheelchairs anymore," Kalunian said.
While the researchers are still working on better medications, there are some steps patients can take on their own. For example, all three doctors and Zeppieri-Caruana said that anyone with lupus should stay out of the sun as much as possible. And, if patients have to be outdoors, they should cover up with clothing, sunscreen, a hat and sunglasses. Sun, in addition to aggravating a lupus rash, can actually activate the disease in the rest of the body, according to Kalunian.
Smith said it's crucial that people don't smoke if they have lupus. "Smoking is terrible for lupus patients because there can be blood-vessel involvement."
Zeppieri-Caruana said she's noticed that what she eats makes a big difference in how she feels. She said red meat and fried foods, in particular, can aggravate her lupus. Smith said it's important to eat heart-healthy foods, such as fruits, vegetables and whole grains, because heart disease is increasingly being recognized as a risk for people with lupus.
It's also important to rest when needed. But, Hearth-Holmes said, this really varies from person to person. She said some people can work full time, while others find it exhausting. Her advice? "Limit yourself only as much as you want to limit."
Exercise can also help people with lupus stay in shape and stay more flexible. But, again, this will depend on the severity of the disease. Smith advised that even those with severe lupus should try to participate in some sort of activity. "Inactivity leads to problems on its own. Bones become thinner and it gets harder for people with swollen joints to move them," he said.
Zeppieri-Caruana also recommended joining a support group and seeing a therapist to talk about living with lupus. She said there are online groups available, which is very helpful when you're too tired to go out, but still need the support.
Learn more about lupus and World Lupus Day from WorldLupusDay.org.
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