The study of lupus has come a long way over the past 2 decades. In 2011, the first lupus-specific treatment to appear in the last half century was FDA approved. Just 20 years ago, only about 40% of lupus patients lived beyond 3 years after diagnosis. Now, a normal lifespan is possible for most, when diagnosed early and monitored long term.
Some of today’s challenges include early diagnosis, which unfortunately, presents problems. Lack of awareness about lupus among the public lengthens the time before patients seek treatment. Diagnosis and classification remain a challenge for physicians, including specialists, even when guided by the ACR’s 11 classification criteria and the SLICC’s 17 criteria. Despite continuing research, the pathogenesis of lupus is still unclear, as are the reasons for the high incidence in women, and in women of color specifically. The magnitude of the problem is serious, as more than 1.5 million Americans have lupus, according the S.L.E. Lupus Foundation.
However, there have been treatment advances. The biologic Benlysta (belimumab) was recently approved. It is a targeted human monoclonal antibody that binds to soluble B lymphocyte stimulator (BLyS), which inhibits the binding of BLyS to B-cell receptors. This allows more B cells to undergo apoptosis and reduces differentiation of B cells into immunoglobulin-producing plasma cells. The drug, administered via infusion, needs further testing in certain types of active disease, and not surprisingly, is very expensive. The search is on for better medications with fewer side effects than this drug and the commonly used prednisone, methotrexate, celecoxib, and others.
In 2013, a Spanish study, “Glucocorticoids and irreversible damage in patients with systemic lupus erythematosus,” was published and established a maximum safe (not associated with damage accrual) dose of <7.5 mg/day of prednisone, which appeared to be well tolerated. The study also recommended pulsed treatment (with methylprednisolone) during flares to lessen the potential risks of long-term steroid use, with background treatment with an antimalarial.
The issue of how to decrease patient noncompliance with long-term disease management, which can lead to unnecessary deaths, may be partly solved with increased access to health insurance and the expansion of Medicaid across the country. In addition, over the past few years, several lupus management apps have become available to help patients manage the disease, which may be attractive and helpful to part of the demographic affected by the disease. Some of these apps include:
- The Lupus App (free), or the Mumbai Arthritis Clinic Lupus App, has tools and resources to help patients monitor and take better control of their disease. Prescription management is included, as well as an appointment calendar and a symptom tracker. Patients can also email the information to their physicians through the app.
- Lupus Tracker Pro app is a symptom tracker that organizes them into an easy-to-read grid format.
- Living with Lupus (free) is an educational tool that gives users access to the online living with lupus community known as Lissa’s World and all its content, news, and information.
- Mango Health (free) helps track medications, dosage, and times they should be taken.
- The Lupus Companion (free) by the American College of Rheumatology is a symptom, medication, and appointment diary. It was designed to provide easy feedback to physicians.
Some lupus blogs that may be valuable to your patients include:
- Despite Lupus (http://despitelupus.blogspot.com/) is Sara Gorman’s blog about living with lupus since the age of 26. She also authored the book Despite Lupus.
- Lupus, Humor and Wellness (http://lupusandhumor.blogspot.com/) is sponsored by Cara Ulbrich. She follows a humorous approach and her blog posts are reflective of this.
- Molly’s Fund Fighting Lupus (http://www.mollysfund.org/blog/) includes all types of information for coping with lupus.
Will more money for new drug development find its way to enterprising researchers, keeping them in the lab and focused on lupus treatment? Are your patients generally familiar with (or have they ever heard of) lupus, prior to being diagnosed? How are you and your organization fighting compliance issues? What tactics are working for you?
- About lupus. S.L.E. Lupus Foundation website. http://www.lupusny.org/about-lupus.
- American College of Rheumatology. 1982 SLE classification. American College of Rheumatology website. http://www.rheumatology.org/practice/clinical/classification/SLE/sle.asp.
- Could I have lupus? S.L.E. Lupus Foundation website. http://www.lupusny.org/about/psas/could-i-have-lupus.
- Lupus diagnosis. Lupus Research Institute website. http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis.
- Molina R. Great apps for lupies—link roundup. Life Despite Lupus website. May 12, 2014. http://lifedespitelupus.com/2014/05/12/lupus-apps/.
- Orbai PM, Alarcón GS, Gordon C, et al. Revision of classification criteria for systemic lupus erythematosus [published online ahead of print May 2, 2012]. Arthritis & Rheumatism. doi: 10.1002/art.34473.http://www.lupus.org/research-news/entry/revision-of-classification-criteria-for-systemic-lupus-erythematosus.
- Ruiz-Arruza I, Ugarte A, Cabezas-Rodriguez I, Medina J-A, Moran M-A, Ruiz-Irastorza G. Glucocorticoids and irreversible damage in patients with systemic lupus erythematosus [published online ahead of print May 2, 2012]. Rheumatology. doi: 10.1093/rheumatology/keu148. http://rheumatology.oxfordjournals.org/content/early/2014/03/27/rheumatology.keu148.