Ever since I was little, I have wanted to see a wolf—a real, enormous, wild one. Wolves are powerful, mysterious, and frightening yet beautiful beyond words. I’ll root for the werewolves instead of the vampires any day.
However, there is another wolf that I am too familiar with. It is also enormous, mysterious, and frightening. It is an ever-present beast that consumes all that is good in this world. It lurks, stalks, and preys upon flesh and innards, leaving devastation in its wake. If you think I am being overly dramatic, perhaps you are right. But ask anyone who lives with it, and they will tell you that I am being kind.
Lupus is a complex auto-immune disorder that is as insidious as it is menacing. Its history dates back centuries, and ancient medical texts reference symptoms resembling lupus. However, physicians began recognising lupus as a distinct disease only in the 19th century. In 1851, dermatologist Ferdinand von Hebra coined “Lupus erythematosus” to describe the distinctive facial rash resembling a wolf’s bite (hence lupus, Latin for wolf).
The most common type of this disorder is Systemic Lupus Erythematosus (SLE), which affects multiple organs and systems within the body. Then there is Discoid Lupus Erythematosus (DLE), which primarily affects the skin and presents as circular, scaly lesions (think wolf’s bite). Finally, there is drug-induced lupus, which occurs as a reaction to certain medications. Additionally, Neonatal Lupus may affect infants born to mothers with certain lupus-specific antibodies.
A list as long as my arm!
The most common symptoms of lupus include:
• Skin rashes, such as a butterfly-shaped rash over the cheeks and nose, often following exposure to sunlight
• Joint pain, muscle pain, or chest pain (especially when taking a deep breath)
• Headaches
• Hair loss
• Fatigue
• Fever
• Swollen eyelids or swelling around one or both eyes
• Thick, scaly patches of skin anywhere on the body
• Mouth sores
• Swelling in the lower legs and feet
• High blood pressure
• Blood in the urine
• Having to urinate more frequently at night
• Pain in the side
and the list goes on…
These symptoms can vary in severity and affect different parts of the body. Flare-ups are when symptoms worsen, while remission is when they improve for a while. A person can have one or two of these symptoms or all of them. It also affects every individual differently. One thing is a given, though: if you have lupus, you are constantly in varying degrees of pain.
What a conundrum. Because some of the symptoms of lupus overlap with those of other auto-immune disorders, it can take years to get a proper diagnosis. It involves a combination of your medical history, physical examination, and laboratory tests and often requires the expertise of rheumatologists.
Traditional meds aim to manage the symptoms and prevent more severe organ damage.
1. **Nonsteroidal anti-inflammatory drugs (NSAIDs)**: These medications help manage pain, inflammation, and fever caused by lupus.
2. **Corticosteroids**: These medications, such as prednisone, methylprednisolone, and dexamethasone, are used to control lupus and manage severe lupus with brain or kidney involvement. They work quickly to reduce swelling, warmth, and soreness in joints caused by inflammation.
3. **Antimalarial drugs**: Medications used to treat malaria affect the immune system and can help prevent lupus flares and treat lupus symptoms such as joint pain and inflammation.
4. **Immunosuppressants**: These medications suppress the immune system and are used to treat auto-immune disorders such as lupus and rheumatoid arthritis.
5. **Biologic agents or monoclonal antibodies**: These medications are aimed at specific parts of the immune system instead of the immune system as a whole.
6. **Other medications**: People with lupus may be prescribed other drugs depending on the symptoms and organs involved, such as antihypertensives for high blood pressure, statins for high cholesterol, antibiotics for infections, anticonvulsants for seizures, and medications to treat weak bones (osteoporosis).
************* Please, for the love of all that is holy, do not take any of these meds without consulting your doctor *************
In recent years, complementary and alternative therapies have gained popularity among lupus patients. Traditional meds can have such adverse side effects that more people are seeking holistic approaches to symptom management. These include dietary changes, acupuncture, yoga, and herbal supplements. While it may work for some, it’s essential to be cautious and consult healthcare providers to ensure compatibility with conventional treatments.
Living with lupus can impact one’s quality of life like no one’s business: physical health, emotional well-being, and social functioning (read: LIFE!). Chronic pain, fatigue, and unpredictable symptoms often limit daily activities, employment, and relationships. Mental health challenges such as anxiety and depression are also common among lupus patients, highlighting the importance of holistic support and self-care strategies.
Despite growing awareness, misconceptions about lupus persist. One common myth is that it is contagious, leading to social stigma and isolation for those affected. The fluctuating nature of symptoms means you might feel great one day but can’t get out of bed the next. This leads to scepticism or disbelief from others, worsening the emotional burden on individuals living with the disorder. Education and advocacy are crucial in dispelling myths and fostering understanding and empathy.
While lupus primarily affects women of childbearing age, it can also occur in men and children. Also, certain ethnic groups, including African Americans, Hispanics, and Asians, are at higher risk of developing it. Research suggests a genetic predisposition combined with environmental triggers, such as infections or hormonal changes, may contribute to the development of lupus. (In other words, no one knows precisely what causes it.)
It can be a lonely road. Even with the support of loved ones, facing the challenges of lupus is often easier with support from others who understand firsthand what it’s like to live with lupus. Several organisations and online communities offer valuable resources, information, and emotional support. (See the list of support groups at the end of the article.)
In conclusion, lupus remains a multifaceted illness with far-reaching implications for those affected. By shedding light on its history, types, symptoms, diagnoses, treatments, and impact on quality of life, I hope to foster greater understanding and support for individuals with lupus. It is tough, but talking about it lightens the load, however little at a time.
In Part Two, I will share bits from my personal journey with lupus.
Let me know if you have lupus, are newly diagnosed, or have a friend or partner with lupus and would like to understand it better.
References:
1. Lupus Foundation of America. (n.d.). About Lupus. Retrieved from https://www.lupus.org/resources/about-lupus
2. National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2019). Lupus. Retrieved from https://www.niams.nih.gov/health-topics/lupus
3. Lupus Research Alliance. (n.d.). Understanding Lupus. Retrieved from https://www.lupusresearch.org/understanding-lupus/
4. Lupus UK. (n.d.). About Lupus. Retrieved from https://www.lupusuk.org.uk/about-lupus/
5. Mayo Clinic. (2021). Lupus. Retrieved from https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
Support Groups:
1. Lupus Foundation of America: https://www.lupus.org/
2. Lupus UK: https://www.lupusuk.org.uk/
3. Lupus Research Alliance: https://www.lupusresearch.org/
4. LupusChat (Online Support Group): https://www.lupuschat.com/
5. LupusConnect (Online Support Community): https://www.lupusconnect.com/