MAY IS LUPUS AWARENESS MONTH! – MAY 10, 2017 IS WORLD LUPUS DAY! – JOIN ME AND PUT ON SOME PURPLE!
From the Desk of “Dr. Maggie” Cadet
I can remember the first time I heard the word “systemic lupus erythematosus” (SLE or lupus).
In my first blog, I briefly shared the story about meeting a girl during my time at medical school who had complained of several months of joint pain and swelling, extreme fatigue, and mild hair loss. She told me that she had been diagnosed with lupus. At that point in medical school, I barely knew the details of this disease. From lectures, I recalled that it was considered to be a type of autoimmune disease.
Autoimmune diseases are illnesses that occur when the body’s tissues are attacked by its own immune system. Patients with autoimmune diseases produce proteins or antibodies in their blood that target tissues within their own body rather than foreign infectious agents like viruses and bacteria, resulting in inflammation.
I could tell that this young woman was in disbelief about her diagnosis. Moreover, she was given a therapeutic regimen that consisted of steroids and other medications. She never fully understood the extent of her disease. For example, she was unaware of the association of early heart disease, lung disease, brain involvement or kidney damage, that can occur with SLE if early and aggressive treatment is not taken to control disease activity. I also didn’t understand how serious this disease could be, or I would have tried harder to persuade her to follow up with doctors and take her medications regularly. Sadly, I received the tragic and surprising news that she had passed away from complications of the disease.
Over the years, I have met numerous women and men who come from different countries and have never heard about this disease and have limited knowledge about diagnosis and treatment. Raising awareness in different ethnic groups especially African Americans, Afro-Caribbean, Hispanics, Native Americans, Native Hawaiians, Pacific Islanders and Asian females is very important to me and has been a focus in my clinical practice over the years.
I have so many positive stories of people who live with this diagnosis every day and are living incredible lives. Several years ago I was invited to a cosmetic workshop in NYC. After the workshop, the women were paired off with a makeup artist from one of the biggest beauty brands. I was immediately taken to a woman who appeared to be so energetic, vibrant, and not to mention gorgeous. We instantly connected as we started to chatter. Sometime in the middle of the conversation, I told her what I did for a living. When I told her that I was a rheumatologist, her eyes widened with amazement and told me that she has been living with SLE for many years.
We proceeded to talk for the next hour about how she grew up coping with the disease and how she refused to let this disease control her life. She continued to tell me how she was diagnosed in college and she had complaints of joint pain and chest pain from inflammation around her heart. Her disease was complicated by kidney failure requiring weekly dialysis and eventually two kidney transplants because her first one was complicated by a blood clot. She told me that she had a successful second kidney transplant and had been treated with several years of steroids, chemotherapy (cyclophosphamide) and other agents.
The last time I saw her she was on a regimen of low dose steroids and anti-rejection medications. It was so great to see this amazing, forty-something, married, professional in one of the best cosmetic companies of the world stand before me after enduring two kidney transplants. At the end of my makeover, we exchanged our contact information. This woman was a perfect example of how aggressive treatment, a healthy lifestyle, a supportive physician and social network, and a positive outlook on life can help control the disease despite flare ups.
Last summer, I cared for another young, beautiful and successful legal professional who had moved to NYC to pursue a job opportunity and move forward in her relationship. She had a history of kidney disease related to her lupus, but was in remission. She was taking an immunosuppressant called mycophenolate and living her life to the fullest.
Although I have seen the ugly side of this disease, I have also witnessed many success stories. I mainly see women, but men as well, who live with the strength and courage to wake up every day and fight this disease by keeping their disease activity in remission with the help of caring physicians, potent medications and healthy lifestyle modifications. There are effective therapies to help women and men live productive lives, but the benefits and risks must be discussed with a physician.
There are so many role models living with SLE in today’s world. In recent years, the attention to lupus has been increasing. Sensational singer and actress Selena Gomez told the public in 2015 that she was diagnosed with lupus and took some time away from the spotlight to treat her lupus with chemotherapy (which can be used to help control inflammation for this disease). Rapper Snoop Dogg’s daughter was seen on the “View” many years ago opening up about her battle with juvenile lupus. Toni Braxton has spoken candidly on Dancing with the Stars and mainstream media about her battle with lupus and early heart complications. Since being diagnosed with lupus and nephritis (kidney disease) in 2012, entertainer and television personality Nick Cannon has also taken the opportunity to educate more people about this complex disease.
Every day when I go to work, I keep the faces of the individuals that I have cared for in my mind and in my heart. These patients inspire me to increase awareness about the clinical symptoms, diagnostic evaluation, and complications like heart disease and diabetes associated with this disease. Thank you for taking the time out to read this story and share it with any male or female that may have symptoms suspicious for lupus (see below). That individual should be referred to a rheumatologist and follow up every few months. Most people can live normal and productive lives but the disease is chronic and can be challenging in terms of activity limitations and quality of life with flares. Individuals must take an active role in their treatment plan and find support with family, friends, health care professionals or other individuals living with the disease. There is so much hope for a future cure!
You may have Lupus…
if your doctor finds that you have at least four of these problems:
- malar rash- butterfly shaped rash over the cheeks (spares nasal creases)
- discoid rash- round or disk-shaped lesions that can be scaly and thick. Lesions may be red or can become discolored and scarring over time.
- photosensitive rash (rash with sun exposure in sun exposed areas like face, neck, arms, legs)
- Mouth or nasal ulcers/sores, lasting at least a few days or more
- Heart or lung inflammation. Pleurisy/pleuritis- swelling of the tissue lining the heart (pericarditis) or lungs that can result in chest pain with deep breaths.
- Kidney problem (Nephritis). Blood or protein in urine can be detected, facial or leg swelling, kidney function can be abnormal
- Pain and swelling lasting several weeks to months in more than two joints
- Neurologic problem. Stroke, seizure, confusion, memory difficulties or other mental health problems like psychosis, depression
- Abnormal blood tests
- anemia, low white blood cells or platelets counts
- positive proteins or antibodies called antinuclear antibodies (ANA) that may cause the body to attack different organ systems. Present in many lupus patients but are also found in healthy individuals
- complement proteins (part of the immune system, complement 3 and complement 4)
- other specific antibodies that show an abnormality in the immune system
- anti-double stranded DNA
- antiphospholipid antibodies
- false positive blood test for syphilis (no actual syphilis infection)
Individuals may also note fever for more than a few days, extreme fatigue for days to weeks despite sleep, sudden unexplained hair loss.
Complications of Lupus
- Early and or accelerated heart disease/atherosclerosis, heart attack. This is a MAJOR COMPLICATIONand leading cause of death among people with lupus.
- Miscarriages, pregnancy complications like preeclampsia (high blood pressure in pregnancy), premature birth
- Areas of gastrointestinal system may be affected (liver, pancreas, bile ducts)
- High blood pressure and loss of kidney function
- Higher risk for miscarriages or premature birth
- Blood clotting (thrombosis)
- Blood vessel inflammation called vasculitis
- Diminished blood supply to bone causing bone tissue death (avascular necrosis)
Healthy Lifestyle Modifications
- There is no specific diet but maintain a well-balanced diet with fresh fruits, vegetables (spinach, broccoli), and whole grains. Possibly consider incorporating omega 3 fatty acids (flaxseed oil and fish oil) and adequate calcium and vitamin D (which play a role in bone health and immune function). Steroids can worsen bone quality.
- Reducing stress (meditation, walking, yoga, pilates)
- Stop smoking
- Wearing sunscreen and sun protective clothing against UVA and UVB light
- Stay active with exercise.
- Rest during the day and establish good sleep regimen
- Discuss herbs and dietary medications, vitamins with your physician first
There is no cure for lupus but there are some treatment options that can help individuals live a productive life despite the challenges. Sometimes other specialists like a nephrologist, cardiologist, gastroenterologist, hematologist or OBGYN may get involved and be part of the medical team since lupus may affect multiple organ systems.
There must be a discussion about benefits and risks of a specific medication, as well as a review of an individual’s medical history with a rheumatologist first!
Common treatment options that a rheumatologist may consider are:
- Nonsteroidal anti-inflammatory drugs (NSAIDS)
- Antimalarial drugs (hydroxychloroquine)
- Steroids (prednisone, methylprednisolone, prednisolone)
- Immune suppressants
- Azathioprine (Imuran)
- Methotrexate (for predominant joint symptoms)
- Cyclophosphamide (Cytoxan)- a form of chemotherapy in lower doses to control inflammation
- Cyclosporine (Neoral)
- Mycophenolate mofetil (Cellcept)
- Biologics (newer drugs that block certain chemicals)
- Belimumab (benlysta)- FDA approved medication for active but not severe lupus adult patients
- Rituximab (Rituxan)- a form of chemotherapy
- Abatacept (Orencia)
Note: Some of these treatments are already approved for other rheumatic diseases like rheumatoid arthritis and may be an option for some individuals.
For more information on Lupus, please check out these websites:
I am involved with this wonderful nonprofit organization which helps individuals who are living with lupus and other autoimmune diseases connect to each other and feel that there is an online support community.
- ebook Lupus: Real Life, Real Patients, Real Talk by Marisa Zeppieri-Caruana
Read some of my personal experiences with lupus patients.