A cure for lupus remains elusive

/

By RICKI LINDSAY

Working in the yard, pitching in with home remodeling or cooking a meal had never been an issue for 49-year-old Cathy Burns. The Sarasota mother of three and grandmother always had energy to spare.

FHLupus31“I could and did work hard — as hard as any man — and I loved that sense of accomplishment,” she recalls. “I always had a very high energy level and could go all day long with intense and demanding work and not get tired  . . .  until a few years ago.”

Job losses and a very depressed economy in Michigan brought Cathy and her husband, Larry, to Florida in 2011 for a new start.

But by 2013, Cathy began to experience a puzzling and sporadic range of physical symptoms. She was in pain and fatigued beyond explanation; her once inexhaustible energy to tackle and complete a project vanished.

“My shoulders felt as though they had been pulled out of their sockets, and my knees ached terribly,” she says. “I assumed that the rash across my nose and cheeks was just rosacea. But I also just didn’t feel well, in general, and was extremely fatigued. For someone who had always been so physically, socially and mentally active, it was just such a change.”

She passed off the symptoms as part of the aging process.

“I didn’t connect the dots,” she says. “I never thought it could be anything serious or life-altering.”

By June 2014, Cathy had finally received a diagnosis of systemic lupus erythematosus — a chronic, complex and disabling autoimmune disease that affects more than 1.5 million Americans. According to the Lupus Foundation of America, more than 16,000 new cases are diagnosed in the U.S. each year.

Yet so many people don’t recognize the symptoms for what they could possibly represent.

Lupus has no cure, and the foundation says some scientists believe the disease arises from a combination of genetics, hormones and environmental factors. It impacts people of all ages and can be fatal.

With lupus, the immune system creates antibodies that attack the body’s own tissues and organs, creating severe and destructive inflammation. The kidneys, brain, heart, lungs, blood and blood vessels, skin and joints can all be affected. Premature heart disease, lung inflammation and strokes are not uncommon.

Symptoms can include painful or swollen joints, unexplained fever, a butterfly-shaped rash or color change across the cheeks or bridge of the nose, extreme fatigue, sensitivity to the sun, mouth or nose ulcers, and unusual hair loss on the scalp.

Cathy’s delay in getting a diagnosis was not for lack of effort. Lupus symptoms wax and wane and mimic those of other diseases, such as rheumatoid arthritis. There is no single diagnostic test that can positively identify the illness.

According to the Lupus Research Institute, more than 90 percent of lupus sufferers are female, mostly young women between the ages of 15 to 44. Women of color are two to three times more at risk.

Lupus is treated by rheumatologists — specialists who treat diseases of the joints, muscles and bones. Anti-inflammatory drugs, steroids and some therapies similar to those used for cancer treatments can suppress the immune system. With treatment, some patients experience enough remission to lead a normal life.

IN THE LABORATORY

While there is yet no cure, recent discoveries are giving patients and their physicians hope that more positive developments could be on the horizon.

In February, researchers at University of Florida Health reported early results of a treatment that might reverse the effects of the most common type of lupus. The findings are from a two-year study that used human cells and mouse models. It has yet to undergo clinical trials in humans.

The UF researchers are focusing on immune activity at the cellular level. By changing the way immune system cells use energy, the scientists are hoping to regulate the disease. In particular, the researchers looked at the way specialized white blood cells — known as CD4-T cells — use glucose, a simple sugar for energy metabolism.

When the researchers blocked the glucose metabolism of the cells using the common type 2 diabetes drug, metformin, along with a glucose inhibitor, the CD4-T cells returned to normal activity and the symptoms of lupus were reversed.

A similar approach was used in a cancer research study and met with success, giving the lupus research team the idea to do the same, said Laurence Morel, a director of experimental pathology at UF.

“If it works to limit metabolism of cancer cells, it should work to limit metabolism in T-cells,” she said.

The approach goes beyond just controlling symptoms. Lupus-afflicted mice treated continuously for one to three months closely resembled those that did not have the disease, Morel said.

And “repurposing” the existing diabetes medication metformin to treat lupus is cost-effective, since the drug is already known to be safe for humans. New treatments that use an existing medication can go to clinical trials more quickly, with fewer regulatory hurdles.

COSTLY TREATMENT

It has taken time for scientists to improve their understanding of the disease. The first lupus therapy in 50 years was approved for use in 2011.

The drug Benlysta (belimumab) works by reducing the body’s ability to attack its own tissues. Given monthly by intravenous infusion in a physician’s office, the new drug had an immediate effect for Burns.

“The day after the first treatment, the ‘butterfly’ rash on my face had diminished by half, so I knew it’s working,” she says. “But I’m still not OK.”

This first drug in half a century comes with a very steep price tag: $11,000 per infusion or about $132,000 per year. Cathy applied for and received financial assistance from the drug maker.

Infusion therapy creates another set of complications for lupus patients. If the infusion is coded by the physician’s office staff as “chemo” rather than as an “injection,” patients are thrown into the insurance deductible class used for cancer patients, with much higher deductibles and co-pays.

Financially, the disease has been devastating to the couple.

Unable to hold a job due to her extreme fatigue and pain, Cathy applied for Social Security disability and was denied. She has appealed the denial and has been told that it will be two years before her case is reviewed.

“The guilt that I can’t contribute financially is overwhelming,” she says. “I have always worked and earned a good income as a high-level executive assistant. It’s really hard for people without this disease to understand how debilitating it is.”

Her husband, Larry, adds that their difficulty finding guidance has been frustrating. The nearest support organization, the Lupus Foundation of Florida, is in St. Petersburg.

“I am amazed at how many people have the possible symptoms and don’t know to get tested, or what kind of doctor to see,” he says. “What is more disheartening is the lack of information and, in particular, support.”

INTERESTED?

Patient education

A free lupus patient education seminar is scheduled for Sarasota on April 9 from 5:45 to 7:45 p.m. at the North Sarasota Library, 2801 Newtown Blvd.

The seminar will be in two parts: “When the Immune System Goes Wrong” and “25 Ways You Can Live Better With Lupus.” The presenter is Linda Ruescher, program director, Lupus Foundation of Florida.

For more information, go to lupusflorida.org.

Walk for Life Without Lupus

An awareness-raising walk will be held Saturday, May 2, from 8 to 10:30 a.m. at Payne Park in Sarasota. Go to lupusflorida.org.

Other websites:

niams.nih.gov/health_info/lupus/

Last modified: March 31, 2015
All rights reserved. This copyrighted material may not be published without permissions. Links are encouraged.