May is Lupus Awareness Month.
Did you know that the word “lupus” is Latin for wolf?
We know that sounds random, but there is a meaning behind the name. As early as the 13th century, a health care provider (HCP) said that the skin lesions caused by the disease resembled a bite mark from a wolf.
When people talk about lupus, they usually mean the most common type, systemic lupus erythematosus. “Systemic” means throughout the body and “erythematosus” comes from the Greek word erythros, meaning red – a reference to the butterfly-shaped rash that accompanies the disease.
While the name represents some symptoms associated with the disease, there are many symptoms to consider with lupus. And the disease affects everyone differently, so there is no one-size-fits-all approach to treating the disease.
Symptoms of lupus
Lupus is a chronic autoimmune disease that causes your body’s immune system to attack healthy organs and tissues. This means that the disease can affect different parts of the body and manifest itself in different ways.
Symptoms of lupus can include:
- Butterfly-shaped rash on the face
- Joint pain, stiffness and swelling
- White or blue fingers and toes due to cold temperatures or stressful situations
It’s important to keep track of your symptoms and their severity so that you and your doctor can take them into account when creating a treatment plan.
Types of Healthcare Providers for Lupus Treatment
The first step in treating lupus is finding an HCP you trust.
For many people, that person is a rheumatologist. A rheumatologist specializes in treating conditions that affect muscles and joints. However, because many medical professionals treat lupus, primary care physicians can also help you with treatment options and general care.
Depending on your symptoms and the type of lupus, other healthcare professionals for lupus-related conditions may include:
- A Nephrologist for kidney problems such as lupus nephritis. Lupus nephritis is a serious complication of SLE that occurs when the immune system accidentally attacks the kidneys and can cause inflammation and organ damage.
- A Gastroenterologist for problems in the digestive tract, including the mouth, esophagus, stomach, intestines, liver, pancreas and gallbladder
- A Dermatologist to treat wounds, rashes and/or scaly skin associated with a type of lupus called cutaneous lupus
- A cardiologist for heart problems
- A neurologist in diseases of the brain and nervous system
- A Pulmonologist in lung diseases
- A Perinatologist for high-risk pregnancies and gynecological care
Open communication with your doctor is key to treating lupus
The next step in finding the right treatment plan is to discuss your symptoms and your treatment goals with your doctor as part of a shared decision-making process.
Because no two cases of lupus are the same, it is important to tell your doctor what symptoms you are experiencing, what symptoms bother you most, and the different ways lupus affects your life.
It is a good idea to write down this information before your HCP visit and also define what you want to achieve with the treatment. A good starting point for defining your personal goals is to think about what activities you enjoy doing and how you can find treatment that allows you to do what you love.
For example, if you suffer from joint pain every day, your personal goal might be pain management.
Treatment options for lupus
There is no cure for lupus yet, but medications can help relieve symptoms, reduce inflammation and flare-ups, and reduce the risk of organ damage.
- Hydroxychloroquine (an antimalarial drug) reduces pain and flare-ups and reduces the amount of other lupus medications needed to treat the disease
- Nonsteroidal anti-inflammatory drugs (NSAIDs) help relieve pain and inflammation
- Steroids quickly relieve pain, swelling and inflammation
- Immunosuppressants reduce organ damage
- Monoclonal antibodies target immune cells and help control disease activity
- Biologics reduce disease activity, prevent flare-ups, and reduce the amount of other medications needed to treat lupus
- ACTH gels reduce inflammation and are used when steroids or other medications don’t work
When discussing treatment options with your doctor, it is also important to discuss medication side effects and any long-term effects you may want to consider.
In addition to medications, alternative therapies (physical therapy or chiropractic) and lifestyle changes such as stress reduction and getting enough sleep are options you may want to incorporate into your plan.
Shared decision making makes a difference in lupus treatment
Lupus is a complex disease and you may need to try several treatment combinations to find the plan that works best for you. But open communication between you and your HCP can help you find the right combination so you can work toward remission and live your best life.
This educational resource was created with support from GSK, a member of the HealthyWomen Corporate Advisory Council.
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