Why Lupus is So Difficult to Treat

Doctors are changing how they think about lupus, and it could affect your treatment plan.

The “treat-to-target” method is already familiar to people with high blood pressure, diabetes, or rheumatoid arthritis. After your diagnosis, you work with your doctors to adjust medications until you achieve a blood pressure, blood sugar, or rheumatoid disease activity below a set target number.

In 2012, a group of European rheumatologists first proposed approaching lupus this way, and recently published official recommendations.

“The group has to be lauded for its effort to define disease treatment goals for lupus; however, lupus poses a set of unique challenges that make it hard to define one single treatment target for all patients,” Dr. Vaidehi Chowdhary, a rheumatologist at Mayo Clinic in Rochester, Minnesota, said.

Lupus has always been enigmatic: it’s not one disease, but many autoimmune diseases, and symptoms can present in the joints, skin, kidneys, blood cells, heart or lungs. That’s why it’s something of a punch line for primetime medical dramas – symptoms don’t really matter; if you’re not sure what’s wrong, it could be lupus.

“It is hard to capture the complexity of lupus in a disease index that can be used easily in routine clinical practice,” Chowdhary said. “Different disease manifestations may not respond at the same time or one manifestation may get better and the other worse.”

With one treatment, for example, kidney disease may improve but fatigue and blood counts do not, she said. That makes it hard to track which treatments are working to achieve the “target” goal.

Plus the involvement of so many different body systems means you’ll often have several different specialists involved in your care, and they may not always agree on treatment goals.

It’s also hard in the case of lupus to distinguish active disease, which requires strong treatment, from past damage caused by the disease, which would not.

In fact, even the international task force failed to define “remission” for systemic lupus, and that’s a definition you need if you’re trying to work toward it.

“Lupus affects certain ethnicities and population which are not represented well in many clinical trials and thus treatment goals may be different in different racial groups,” Chowdhary said.

The European task force did a good job of reviewing the European literature, but treatment challenges may be different in different populations, she said.

But generally, the treat-to-target approach has several goals: minimizing infectious complications of immunosuppressive drug therapies, minimizing the use of corticosteroids, addressing pain, fatigue and memory issues, and improving quality of life.

One important new breakthrough in lupus treatment has been recognizing that lupus patients are at increased risk of heart disease. Controlling heart disease risk factors should be an important part of your treatment plan, Chowdhary said.

“One of the common complaints I hear from lupus patients is the remarks made by family members, employers, and colleagues, ‘…but you look so well’ which belies the severity of disease many patients have,” she said.

Even though many of the symptoms of lupus are not visible to the naked eye, pain and fatigue can have a serious impact on wellbeing.

“It is important for patients to be involved in support groups – be their own advocates,” Chowdhary said.

If you are interested in treat-to-target for lupus, “Get involved in your own treatment, in clinical trials and patient advocacy groups,” Chowdhary said.

More work needs to be done on treat-to-target research before it becomes the standard for lupus treatment, but patients in clinical trials can help speed that work along.

One last tip she offers lupus patients is to keep your own organized medical records. Having a great record of what treatments you’ve tried and the symptoms you’ve experienced over time will help you and your doctors see what’s working to achieve the goals of your management plant.

“Keeping an organized set of records with labs over time and notes from different specialist will allow you and physician to discuss important issues of treatment and lead to a more productive appointment,” she said.