NSAIDS, nonsteroidal anti-inflammatory drugs, are used to relieve achy joints and arthritis in mild lupus when pain is limited and organs are not affected.
The anti-malarial drug, hydroxycholorquine, is prescribed for lupus-related arthritis and skin problems especially.
Prednisone, a corticosteroid, is prescribed to reduce inflammation and suppress the activity of the overactive lupus immune system. A helpful way to think of prednisone is as a steroidal anti-inflammatory, in contrast to a nonsteroidal anti-inflammatory [NSAID] which is not as potent and doesn’t require a prescription. Prednisone is often used for major organ involvement and other serious complications.
“Off-label” treatments that doctors and patients have used for lupus include the organ transplant drugs azathioprine and mycophenolate mofetil (CellCept®), the rheumatoid arthritis and non-Hodgkins lymphoma drug, rituximab (Rituxan®), and the cancer drug methotrexate. Because these medicines technically have not been FDA-approved for lupus, patients may have difficulty getting insurance coverage for them.
Other medicines to treat complications of lupus are commonly taken by people with the disease. These vary widely and may include blood pressure drugs, anti-clotting medicines (such as 81 mg aspirin), and supplementary calcium to protect bone density, among others.
What You Can Do
During a flare: Get plenty of rest.
When in remission: Exercise to increase joint flexibility and muscle strength.
If you are sensitive to sun: Use sunscreen and avoid the sun.
If rashes persist: check with your doctor about using a cortisone cream.
Relieve stress: Support groups, counseling, talking with friends, family, and doctors can be helpful.
For fever over 100 degrees F: Call your doctor.
Get regular checkups: These usually include blood and urine tests.
Ask questions: When in doubt, call your doctor.
Report any side effects or new symptoms promptly: Help your doctor know when a change in therapy might be needed.
By guest writer, Danya Adolphs
While only one new drug for lupus (Benlysta) has been FDA-approved in over 50 years, patients with lupus might be surprised to hear that there is no shortage of potential treatments for their disease. In fact, the world of medical research is positively awash in new drugs that might help in lupus.
So what’s taking so long?
The problem is that researchers must figure out which of these many offerings work better than current therapies. Laboratory research can narrow the search somewhat, but it never tells the whole story. To really find out whether a drug is effective against a disease, it needs to be tested in people. Clinical trials are researchers’ way of doing this.
Each new drug requires multiple successful clinical trials before it can obtain FDA approval. And each one of these clinical trials takes millions of dollars to complete. It also requires a dedicated researcher, such as the Feinstein Institute for Medical Research at North Shore-LIJ Health System’s Betty Diamond, MD, to champion the potential new therapy and expertly guide the scientific process.
What’s more, for each Betty Diamond, clinical trials need hundreds of volunteers, like dedicated nurse and mom Theresa Evans, to volunteer as a clinical trial participant. It is through the efforts of people like this that the outlook for new lupus therapies has never looked better.
For Dr. Diamond, it’s an exciting time to be a lupus researcher. “There is a lot on the horizon and we keep learning so much about the disease for new approaches to treatment,” she explains.
But it hasn’t always been this way.
Less than 10 years ago there were only two to three clinical trials in progress for lupus, but now there is an increasing excitement in the government, academia and industry about lupus research and the prospects for new therapies for this disease. Partnerships among the institutes, with patient advocacy groups and industry - promise to turn this excitement into new therapies to prevent the progression of lupus."
Today, research teams are recruiting for over 50 different trials and the Lupus Research Institute reports that extended funding of much of its original research work has reached an all-time high of over $70 million at the National Institutes of Health (NIH) and elsewhere, up $10 million from just last year.
This type of support has paved the path for clinical trials such as the ACCESS trial, a study for people with lupus nephritis sponsored by the National Institute of Allergy and Infectious Diseases (NIAID) and the Immune Tolerance Network.
Dr. Diamond, one of two scientists leading the ACCES trial, is enthusiastic about the pre-clinical data (laboratory testing done before human trials), which she says is some of the most promising to date: “Not only does the progression of the disease stop, but we are seeing a reversal in kidney function that we have not seen before,” she enthuses.
While it’s too early to tell what will happen in the clinical trial, it’s this type of progress that motivates Dr. Diamond to continue to strive towards the goals set when she was still in medical school.
Dr. Diamond’s personal crusade against autoimmune disease stems from her love of Southern women writers. As a medical student, she was moved by the struggle endured by favorite authors, such as Flannery O’ Connor, who died prematurely of lupus.
Their struggle inspired her to try to bring order to a disease that robs patients of a feeling of control. “There was something very poignant about these writers’ struggle,” she explained. “Back then, they really felt that they had no treatment, no options. They felt they were just victims of disease. I wanted to change that.”
And changing lives is what Dr. Diamond has done ever since.
As head of the Autoimmune Disease Center at the Feinstein Institute, and on the faculty of the Albert Einstein College of Medicine, she has dedicated her career to patients with lupus as a researcher and physician.
Dr. Diamond's research of lupus in women, the role of autoantibodies in lupus, and the cognitive effects of lupus have helped to define how scientists and physicians understand the disease. Her research efforts have been recognized by the American College of Rheumatology (ACR), the Arthritis Foundation, the National Association of M.D./Ph.D. programs.
Dr. Diamond knows the science behind the disease but also knows the personal impact the disease has on her patients. She encourages her patients to build a supportive network and to make necessary changes to ease their lifestyle.
For many, she also recommends considering participation in a clinical trial as a way of being active in the management of their disease.
Theresa Evans is a woman who knows the potential benefits of participating in a clinical trial first-hand. Theresa was diagnosed with systemic lupus and nephritis in 1999 at the age of 30 and was told that she had a 30 percent chance of needing dialysis within five years.
A mother of a two-year old daughter and a health care worker herself, Theresa was ready to do whatever she could to beat the disease. “Knowing I had a more severe form of kidney disease, my goal was to stop the progression and be able to stick around for my daughter.”
When her work supervisor introduced her to a clinical trial enrolling patients with her condition, she carefully weighed her options, and decided she was ready to participate. The study was randomized, double-blind, and placebo-controlled, which meant that there was a chance she would receive a sugar pill rather than the real drug. But this didn’t deter her. Theresa believed that just by participating she would be making a difference, no matter what.
Soon she met with a research coordinator and completed the various medical tests to determine if she was eligible. Finally, after making her way through an enormous pile of consent forms, she was officially enrolled. “Fortunately, working in the health field myself, I was aware of the process so it was not quite as daunting!”
Fortunately for Theresa, her experience was an overwhelmingly positive one. The only side effect she experienced during the length of the trial was a slight increase in fatigue, which she attributes to the early morning clinic visits, waking her from her much-needed rest.
Now, six years later, with a kidney function that has remained stable since the start of the trial, she is in the last phase of the study. “One step closer to FDA approval!” she exclaims.
Certainly not everyone participating in a clinical trial will duplicate Theresa’s experience. Like any medication, there are risks involved and each person’s response cannot be predicted. Even with this knowledge, however, Theresa says she would definitely do it again.
Theresa urges, “Research is key. We need research to be able to tell if maybe it’s a B cell where the immune system is going haywire. We may not get a set course, but at least we will have an idea for the next step forward.”
Dr. Diamond echoes this sentiment. “Every clinical trial gets started because there is good reason to think the new therapy will be better than the current therapy.” While acknowledging there are risks and benefits to all studies, she points out that safety is always the first priority in clinical trials, often with medical teams performing frequent monitoring of patients throughout the trial.
For a disease that may seem out-of-control, Theresa sees participation in research as a way of gaining hope and empowerment.
“Participation is very empowering,” she said. “For some people it gives the opportunity to move the field forward. We can’t make progress in treatment of the disease if individuals are not willing to participate.”
Ultimately, Theresa believes it is the fear of the unknown that is hardest to get through when considering participating in a clinical trial. But in the end, it is each person’s own decision whether a particular clinical trial offers a good balance between risk and benefit.
“Go home and take a look in the mirror. Are you where you want to be?,” she said. “Are you at peace? A lot of people express ‘I don’t have control,’ but this could change the person looking back at you. That is empowering!”