With the movie "Red Riding Hood" coming out in March 2011 it seems an appropriate time to put aside the fairy tale and face my own demons. This month I can say I have dealt with and survived the ever luring, shadowy presence of my own wolf for 25 years. At that time Systemic Lupus was as mysterious an illness as the luring predator after which it was named. Life expectancy was anything between being a pest to deal with during a normal life span to a rapidly downhill battle to be lost within five years.
The following information is from the Lupus Foundation of America:
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
- Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
- Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
- Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
- Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
- Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
- It is believed that 5 million people throughout the world have a form of lupus.
- Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
- Women of color are 2-3 times more likely to develop lupus.
- People of all races and ethnic groups can develop lupus.
- More than 16,000 new cases of lupus are reported annually across the country.
March 9, 2011 -- The FDA has approved Benlysta, the first new lupus treatment in 50 years.
An FDA advisory panel last November voted 13-2 in favor of approval. But the panel noted that Benlysta is no wonder drug. Overall, it offered a modest benefit. Only 30% of patients who took the drug in clinical trials saw a benefit.
But the announcement comes as welcome news to patients and doctors frustrated by the limited treatment options available to lupus patients. And it comes even as scientists gain a new understanding of what lupus is, what goes wrong, and where researchers should look for new treatments.
What should lupus patients and their families know about Benlysta? WebMD consulted Eric L. Greidinger, MD, chief of rheumatism and immunology at the University of Miami Miller School of Medicine, FDA briefing documents, and the FDA approval announcement.
Why are new lupus drugs needed?
Officially known as systemic lupus erythematosus (SLE), lupus is an autoimmune disease. It's relatively common, affecting about one in 1,000 people. But some people with lupus have such mild disease they may never know they have it.
Others have relatively mild disease that can be controlled with current treatments. These include over-the-counter NSAIDs such as ibuprofen, corticosteroids such as prednisone, antimalaria drugs such as hydroxychloroquine, powerful immunosuppressants, and cancer chemotherapies. (Lupus is not caused by malaria and is not a cancer, but malarial drugs and chemotherapies suppress various manifestations of lupus).
Still other patients experience frequent lupus flare-ups and suffer devastating side effects from current treatments. And finally, there are patients with life-threatening lupus, at risk of major organ failure.
"In all those cases, the current drugs -- while not perfect -- provide a good series of choices," Greidinger says.
Patients with mild disease may not need treatment, or may be able to keep their symptoms under control with relatively safe antimalaria drugs.
Patients with the most severe disease -- including lupus affecting the kidneys or brain -- can benefit from more aggressive treatments.
But patients in the middle category are more difficult to treat, Greidinger says. They may not get relief from the safest lupus treatments. But stronger treatments, continued over time, may cause side effects that are worse than a patient's symptoms.
Which lupus patients might benefit most from Benlysta?
Many patients with mild-to-moderate lupus can't keep their flare-ups under control with antimalaria drugs.
"Their only real option at present is the use of corticosteroids like prednisone," Greidinger says. "But many of these patients have persistently active disease and thus may be exposed to substantial doses of steroids for months and years with a very high risk of serious side effects."
It is very good news indeed to those who are tired of people asking "What is Lupus?" Perhaps with more research being put into a chronic disease with so many unanswered questions, public awareness may bring about an increase in necessary research. For those of us who struggle with the daily decision to willingly take one drug to combat the damage done from another drug, all the while still only treating symptoms just so we can cope. What is good for one thing is bad for another, yet we are simply told to choose the lesser of two evils. Treat the immediate danger lurking in our midst with a particular medication and see what happens down the road and deal with it then.
At present my prayers have been answered in that I've survived long enough to raise my children. The battle isn't over yet and I aim to continue to elude the ever threatening presence in the shadows. The strength needed can only come from a good support system and wise lifestyle choices. May the Little Red Riding Hood within us continue to educate ourselves about our own health and not be naive in our decisions.