Lupus Awareness Month

According to the Lupus Foundation of America, roughly 1.5 million Americans, and at least 5 million people worldwide suffer from Lupus. This Lupus Awareness Month, we strive to demystify this disease.

Lupus, a systemic autoimmune disorder that predominantly affects women, can be devastating for sufferers. It has the potential to affect virtually every organ, tissue, and system found within the human body – including the heart, lungs, circulatory system, and brain.

Yet, every patient experiences Lupus in their own unique way. Some experience only mild side effects, while others are significantly disabled by their illness for life. This is complicated by the fact that, while science does understand what Lupus is and how it affects the body, we still don’t exactly know how to cure it.

May is Lupus Awareness Month. As the spring unfolds and life begins to return to the Earth, it is once again time to reaffirm how important Lupus awareness and advocacy really is. That’s why we created this helpful educational guide.

What Exactly Is Lupus?

Lupus is an autoimmune disorder… but what exactly does that mean? Let’s break the definition down into simpler terms.

First, an autoimmune disorder is any illness that occurs as a result of the body’s self-protective measures becoming confused or going into overdrive. Instead of fighting off real intruders, such as viruses and bad bacteria, the immune system begins to attack the body directly instead. This can damage or even kill cells and interfere with virtually every part of the body, depending on the disease diagnosed.

Sometimes, the issue isn’t that the body mistakenly identifies the wrong target, but that it jumps into action too quickly instead. For example, the immune system is responsible for clearing out old, dead cells. In the presence of some disorders, it can activate too soon, killing off cells that aren’t yet at the end of their life cycle.

In Lupus, both immune hyperactivity and “friendly fire” cause the immune system to identify normal tissues as a threat. It launches an immediate inflammatory response designed to kill off intruders – but the real result is cellular damage, scarring, and permanent loss of function over time instead.

How Common is Lupus?

More common than you might think. In fact, over 1.5 million Americans are diagnosed with Lupus at any given time. The overwhelming majority (over 90%) of these patients are female; men account for only 10% of all diagnoses.

Research also shows that certain populations are more likely to be affected than others. This includes people of African, Asian, and Native American descent. Having an immediate family member who has been diagnosed also increases your level of risk for Lupus – but that doesn’t mean you’re guaranteed to get it, either.

Most people who are diagnosed with Lupus begin experiencing symptoms shortly after childhood in the early teen years. However, some may not have any symptoms at all until they are in their mid-20s. It is very rare to be diagnosed with Lupus earlier than age 14 or after age 30 (unless the disease was missed).

Recognizing Lupus Symptoms

It is important to note that every patient experiences Lupus individually. Symptoms mostly depend on which body systems are affected, so patients could experience one, all, or even none of the items on this list.

That being said, most patients report:

• Achy “arthritis-like” pain
• Joint redness and inflammation
• Frequent fevers over 100 F
• Swelling around the joints
• Extreme exhaustion/fatigue
• Poor circulation in the legs
• Swollen ankles and/or fingers
• Pain in and around the lungs
• Hair loss (may be sudden or transient)
• Mouth ulcers and/or sores
• Seizures (especially if Lupus affects the brain)

Skin rashes are also common – especially a butterfly-shaped red rash that settles in across the nose and cheeks. In fact, this happens so frequently that it is often the first symptom to diagnose the disease before other issues occur.

Other signs of general illness may occur, including nausea, headaches, overall sense of malaise, and difficulty maintaining energy over time. It’s also common for people with Lupus to eventually be diagnosed with other diseases that stem from chronic damage to various organs. While separate, these still connect to Lupus.

I Think I Have Lupus. What Should I Do?

First, take a deep breath. The fact that Lupus causes such a constellation of symptoms means that it’s very possible you may have something far less serious going on. This is true even if you have multiple symptoms on the above list.

Take the first step to finding out for sure by reaching out to your doctor or pharmacist for advice. He or she will most likely ask you about your symptoms and order simple tests to rule out other illnesses. This is an important step in ensuring Lupus really is the correct diagnosis, especially for varied symptoms.

If you are diagnosed with this disorder, take heart. New treatments can help you overcome the disorder and get your life back. Some patients even successfully enter full-time remission without any additional damage with medications.

How is Lupus Treated?

Lupus treatment has two distinct features. The first goal is to reduce the immune response itself to slow damage and protect tissues. The second goal is to reduce inflammation, which is a side effect of the disordered immune system’s overactivity. For this reason, most treatment plans seek to address both elements at once.

Medications used to treat Lupus might include:

• Non-Steroidal Anti-Inflammatory Drugs (NSAIDS) such as ibuprofen, Celebrex, or ketorolac. These medications not only reduce localized inflammatory response, but may also provide effective pain relief.
• Steroids such as cortisone and dexamethasone may be used topically or orally to help reduce symptoms. They work by temporarily reducing immune response, either on a localized or systemic basis. Because of the risk for side effects they are often a last resort.
• Anti-Malarial Drugs such as Plaquenil might help some patients experience fewer symptoms long-term. However, they take time to work, and most patients don’t see results for at least several months. Once AMDs reduce symptoms, they often hold them at bay for years or even for life.
• True Immunosuppressives, including Methotrexate, specifically target and suppress the immune system as a whole. This can be useful in preventing the body from attacking its own tissues. However, like steroids, they do come with side effects and certain risks.

There is also evidence that patients with Lupus might benefit from supplements that boost energy or help the brain work more effectively. This includes the hormone DHEA. Your pharmacist can tell you more about this substance.

Increasing Lupus Awareness

Lupus may seem like a scary and exotic disease, but the fact that it is so common and so treatable means that patients have more hope than ever before to get (and stay) well. If you want more help learning about Lupus, don’t be afraid to reach out to your pharmacist for help. And if you just want to show your support, spread the word and wear a purple ribbon this Lupus Awareness Month.