The need for such an alternative is undeniable. The list of possible side effects for the most commonly prescribed corticosteroids is long and unsettling, and includes acne, weight gain, swelling in the face and torso, irritability, mood swings and insomnia, peptic ulcers and increased likelihood of infection. Long-term use can lead to glaucoma, osteoporosis, problems with pregnancy and slowed growth in children. Corticosteroid use can also aggravate diabetes and high blood pressure.

People taking antimalarial drugs do better; the percentage of people who experience side effects while on antimalarials is smaller. However, those who do experience symptoms can expect anything from rashes, stomach cramps and bloating to headaches, weakness and retinal damage. Even NSAIDs – Non-Steroidal Anti-Inflammatory Drugs – can cause stomach inflammation and ulcers, high blood pressure and abnormalities with clotting, and pose a danger to people with kidney problems.

Drugs like these are part of the answer, but clearly insufficient in and of themselves. A better treatment method is needed; for this reason, many people are looking to alternative medicine to provide relief.

The Lupus Herb – An Eastern Remedy

A focus of recent studies is Thunder God Vine, or Tripterygium wilfordii. A perennial plant native to Korea, Japan and China, Thunder God Vine has been used by the Chinese as a treatment for inflammation and an overactive immune response for more than 400 years.

Extracts and topical creams are made from the skinned root of the plant; preparation methods are extremely important, as the leaves and flowers of the plant are highly poisonous. However, initial studies have shown that Thunder God Vine does significantly reduce swelling and joint pain in people with lupus-like symptoms, and reduces the autoimmune response, as well.

Unfortunately, the governmental restrictions placed on prescription medications do not currently apply to herbal medicines. Without such regulation, makers of herbal remedies can sell products that vary in potency and quality – which is dangerous for the consumer, who runs the risk of inadvertently under-or-overdosing based on the reliability of the company that produced the drug, and how and where the drug was sold. 

The idea of a lupus herb is not unfounded, but current herbal treatments for lupus require further testing. That said, studies involving Thunder God Vine and similar herbal-based remedies continue. Any effective treatment for lupus is worth further consideration, and herbal medicines offer a promising solution to both lupus symptoms and the prescription medications currently used to treat them.

The American College of Rheumatology has established a list of symptoms characteristic of lupus in adults; a patient displaying four or more of these symptoms is generally diagnosed with the disease.

These eleven symptoms are:

• Butterfly or “malar” rash across the cheeks
• Rashes on the arms, neck, and torso
• Photosensitivity, a condition wherein the skin reacts abnormally to sunlight, causing rashes and lesions
• Mouth or nose sores
• Joint pain
• Chest pain, especially from heart or lung complications
• Increased levels of protein or clumps of red blood cells in the urine
• Nervous system problems such as seizures or psychosis
• Low red blood cell counts, or abnormally high white cell counts
• Autoimmune attacks against healthy tissue
• Presence of Antinuclear Antibodies

Take Care When Diagnosing Lupus In Adults

Lupus is just one of several diseases – including Multiple Sclerosis, certain forms of anemia and thyroid disease, vaculitis and Rheumatoid Arthritis – which are categorized as “autoimmune disorders.” Although the symptoms of lupus should be easy to recognize, many of them are characteristic of autoimmune disorders in general. For this reason, doctors hesitate to diagnose lupus until other possibilities are ruled out.

Some symptoms of lupus which also appear with other autoimmune disorders:

• Sore, inflamed joints (Rheumatoid Arthritis)
• Anemia (autoimmune hemolytic anemia, pernicious anemia)
• Nervous system damage (pernicious anemia, multiple sclerosis)
• Abdominal pain (pernicious anemia, vasculitis)
• Rashes (vasculitis)
• Fatigue (all forms of anemia, thyroid disorders, Rheumatoid Arthritis)
• Chest pain (vasculitis, Rheumatoid Arthritis)
• Skin lesions (diabetes, Sjogren’s syndrome, thyroid disorders, pemphigus)

Diagnosing lupus in adults is not a quick and easy process, but that isn’t necessarily a bad thing. The doctor will order lab tests to analyze the patient’s blood, urine, nerve and reflex response. He will also record the patient’s full medical history, description of symptoms and visible inflammation or rashes. Although the numerous tests can seem exhausting and even unnecessary, a little caution means a proper diagnosis can be made. The right treatment depends on a correct diagnosis – it’s in the best interests of both patient and doctor to take the time to do things right.

Lupus is a condition wherein the body produces immune cells that attack healthy tissue. The immune system identifies “self” cells as foreign invaders, and creates specific antibodies (protein molecule chains that target harmful microorganisms,) to work with immune cells (also called white cells.) Although the exact reason a person will develop lupus isn’t clear, a number of factors seem to contribute to the disease: gender (women are nine times more likely than men to develop lupus,) genetic history, prior history of illness, and in some cases, a poor reaction to certain medications (this last type of lupus will fade once the patient stops taking the drug.) Most patients’ SLE questions have to do with symptoms, but the root cause of any lupus symptom is these self-attacking antibodies, or “autoimmune antibodies.”

SLE Sample Questions

Doctors diagnose SLE according to a list of symptoms specific to lupus, as established by the American College of Rheumatology. If a patient displays four of the eleven symptoms on this list – which includes fever, achy joints, nerve and lung pain, problems with memory and the presence of autoimmune antibodies in the blood – it is probable the patient has lupus.

During the initial examination, the doctor will ask about symptoms and their severity, on a scale of one to ten. Some possible SLE exam questions:

• Where is the pain? On a scale of one to ten, how bad is it?
• What time of day do you feel pain? (Morning, afternoon, before bed, etc.) What helps it? What makes it worse?
• Do you regularly feel exhausted, even when you’ve had enough sleep? How long have you been feeling this exhaustion?
• Have you suddenly gained or lost a significant amount of weight for no apparent reason?
• Do you have a rash? Is it worse after you’ve been in the sun?
• Do you have sores in your mouth or nose that won’t heal?
• Do you have problems with dizziness or blurred vision? Have you had seizures?
• Are your fingers and toes often numb? Do they often feel cold, or look purple or blue?
• Do you have a fever that has lasted several days, but no other apparent signs of illness?
• Do you feel sharp pain when you inhale and exhale?
• Do you feel pain in your chest?

Prepare for the Appointment

The initial consultation will be far more beneficial if the patient comes to the appointment prepared. A journal that lists details about symptoms, times of day, frequency of symptoms and any drugs taken is very helpful, as a written account is more reliable than memory. An informal list of SLE “sample questions,” which anticipates the sort of inquiries the doctor might make, can help the patient describe symptoms more clearly and succinctly. Any copies of medical records, MRI scans or x-rays should be given to the doctor at the time of the appointment – and the patient should be prepared to sign a consent form allowing doctors to share medical information, in case it is necessary to call in specialists, or transfer the patient to another facility.

Websites hosted by organizations such as the LFA sell items with the butterfly to raise money, with the aim of funding research that might result in a cure. However, friends and family of lupus sufferers, or even people who haven’t been directly affected by lupus but want to show support, are also encouraged to wear the butterfly. Money for research is definitely needed – but forming a community of people who understand the difficulties of living with this disease is even more vital. The purple butterfly is the hallmark of that community – and an invitation to join it.

Big Names and Big News

Fundraising is also possible through sponsored events like “Walk For Lupus” and can be incorporated into open-house health fairs. But the Butterfly Gala, an evening of guest speakers and entertainers, is fundraising on a grand scale. Celebrities, Congressmen and other well-known public figures attend the Gala, which is held once a year in May, officially designated Lupus Awareness Month. The aim is to educate as well as solicit donations; to make it clear that lupus is very prevalent in the United States, and while huge advances have been made in the field of research, a cure has not yet been found.

Of course, there are plenty of opportunities to help all year round. Volunteers can host seminars, speak at events, assist in community outreach, meet with state and federal legislators, or even facilitate or lead a support group. Local chapters of the LFA have individual websites that list contact numbers and addresses available to anyone who would like to volunteer.

The lupus butterfly symbol, like the butterfly itself, embodies transformation – turning a symptom of lupus into an image of optimism and positivity, turning a lack of public awareness into widespread understanding, turning a painful and debilitating disease into a commitment to finding a cure. Support for the cause continues to grow, and because of that support, more energy and resources have been allocated to those determined to eliminate lupus for good.

The body has built-in defenses against infection, and very specialized methods to deal with it if infection does occur. The skin, mucous, saliva and other bodily secretions act as a barrier to keep infectious microorganisms out. If those microorganisms do make it inside the body, the immune system has a set of protocols to deal with it. The infected tissue responds to the invasion with inflammation. The infection is contained as the surrounding tissue swells with blood, isolating the damaged area (this is the reason wounded skin looks red and feels warm.) Immune cells, brought to the area by the blood, attack the infection and destroy the diseased and dead tissue. Meanwhile, the tissue itself begins to re-grow.

The immune cells are also called white cells, or more properly, lymphocytes. They are produced in the bone marrow and come in different types, each designed for a specific disease-fighting function. Two types of lymphocytes in particular, the B and T cells, make the antibodies that identify and destroy microorganisms. It is these cells that are primarily responsible for lupus. SLE prognosis, ultimately, means that lupus autoimmune antibodies are present in the blood. It is B and T cells that produce these antibodies and utilize them to destroy healthy tissue.

Testing for SLE: Lupus Prognosis Makes Targeted Treatment Possible

Doctors evaluate a patient’s symptoms, blood and urine test results and nerve cell function before confirming a prognosis; SLE is different for every person who has it, and the severity and type of symptoms depends on factors like age, gender, overall health, genetic predisposition and the length of time from disease onset to diagnosis and treatment.

These tests reveal the presence of lupus, but also tell the doctor what areas or systems in the body are under attack. For example, too much protein in a patient’s urine indicates kidney problems, and poor responses to nerve stimulation, blurred vision and problems with speech and memory could indicate damage to the central nervous system.

The truest indicator that a person has lupus is blood cell and immune cell behavior. Blood tests for lupus look at cell counts, the way red cells settle after a blood sample has spun in a centrifuge, an increase in total number of lymphocytes, and most importantly, antinuclear antibodies. ANA are present with any autoimmune disease, but almost always present in people with lupus; they are the antibodies that target healthy tissue, and more than any other factor, ANA will lead to a prognosis of SLE.

This is never good news, but neither is it entirely bad; an accurate initial prognosis leads to a timely diagnosis, an official declaration that lupus disease is causing a patient’s symptoms. The sooner a correct diagnosis is made, the more effective the treatment plan will be. The idea is to begin treatment before the disease progresses to an advanced stage; the right prognosis benefits the patient, and in that sense, offers hope.

Cutaneous lupus varies according to severity, lupus type, environmental factors and the overall health of the person who has it. The area of antibody attack also varies; the skin itself is actually several layers, each serving a particular function. The epidermis, or outermost layer of the skin, is thin, tough and mostly waterproof, and protects the body against bacterial and viral invasion, sun damage, and damage to blood vessels and internal organs. The pigment cells that determine skin color are in this layer, as are Langerhans cells – a type of immune cell that defends against infection, but sometimes contributes to an allergic reaction (which is actually a type of autoimmune disorder.)

The layer beneath that is the dermis; it gives the skin strength and flexibility, and it contains the follicles that produce hair, sweat and oil. It also contains the blood vessels that nourish the skin, and the nerves that sense pain, pressure, texture and temperature. The lowest level is the fat layer – the subcutaneous layer. Subcutaneous fat protects against injury, heat and cold, and can be used as a source of energy when the body isn’t taking in enough calories.

Discoid, Subacute and Acute Cutaneous Lupus

Lupus erythematosus of the skin comes in three forms: Chronic Cutaneous, or Discoid; subacute cutaneous and acute cutaneous. The discoid is the mildest form, although the lesions associated with it are very pronounced: a rash, especially a “malar” or butterfly-shaped rash across the cheeks and bridge of the nose; a buildup of mucin (mucous cells,) that can cause raised bumps called papules; plugged follicles and scaly, dry patches of skin. This type of lupus can cause scarring and hair loss; deep scars on the scalp may make hair loss permanent. Discoid lupus is usually treated with topical steroid creams and anti-malarial drugs.

Subacute and acute cutaneous lupus erythematosus are more likely to appear when systemic lupus is already present in the body. Subacute cutaneous rash pictures will show patches of reddened skin, mostly in areas often exposed to sunlight; these rashes are non-scarring, although they often leave areas of the skin permanently de-pigmented. Often the lesions or papules associated with discoid lupus will be present. Sores in the mouth and nose and damage to the small blood vessels (vasculitis,) may also occur. Subacute lupus is generally a non-scarring form that is also treated with topical steroid creams and anti-malarials.

The acute cutaneous form in many ways displays the same symptoms visible in subacute cutaneous lupus erythematosus rash pictures. Papules and malar rash, sores and de-pigmentation are usually present. However, the acute form also includes a buildup of fluid called edema, and widespread self-destruction of skin cells, called apoptosis. Because this type of cutaneous lupus is usually found in patients with active systemic lupus, it is generally believed that the steroids and immunosuppressants used to control other systemic lupus symptoms will suppress acute cutaneous symptoms, as well.

People with cutaneous lupus erythematosus will be asked to follow a treatment plan designed to fit the specific symptoms they are experiencing. Regular follow-up appointments are important, for the doctor to monitor the disease progression and assess whether the patient’s medications have made significant changes in autoantibody activity. Most of all, patients will be urged to cover areas of the skin that would normally be exposed to the sun, with sunscreen and layers of clothing, if possible. All types of cutaneous lupus erythematosus flare in response to direct sunlight; simply protecting the skin is the best way to minimize symptoms and prevent lesions, rashes and scarring.

In the United States, vitamins B and D, Omega 3 fatty acids and antioxidants are used as immune system boosters, but these do not fall under the heading of “herbal medicines” – they are vitamin and mineral supplements. Doctors will permit them, if not recommend them, because preliminary studies seem to indicate they are beneficial against lupus; herbs, however, are generally not a part of a Western medicine-based treatment plan.

Chinese medicine is philosophy as much as beneficial herbs; lupus is viewed as an imbalance of mind, body and spirit that is analyzed in keeping with traditional methods. Plant-based cures are an important component of this belief system, and the long lists of ingredients and precise formulas of these remedies reflect a desire that balance be restored.

Chinese Herbal Alternatives

The careful methodology that produces these decoctions serves another important purpose: it limits the consumption of plant extracts that have very powerful effects on the body. One of the most potent, called Thunder God Vine, is now under study as an alternative to immunosuppressant drugs, as it seems to have the same symptom-relieving properties, only with fewer unpleasant – or dangerous – side effects.

Ginseng is another of these lupus herbs, valued for its calming influence over the immune system and its power to reduce inflammation. Fresh ginger is sometimes used, along with peony and raw licorice. These are familiar names, but the majority of Chinese herbs for lupus are exotic and unfamiliar to Westerners: ching-hao, chin-chiu, even buffalo horn.

Potent as these treatments can be, they are still recommended even by Chinese practitioners as supplements to prescription medications, rather than replacements. It is also very important for anyone wishing to try herbal cures to discuss the situation thoroughly with the primary physician, as these “natural cures” for lupus can cause dangerous side effects when combined with prescription medications.

A history of miscarriages and premature births, or the unexplained death of a healthy, normal fetus, are the strongest indicators of lupus anticoagulant in pregnancy. When the doctor suspects that this particular form of lupus is present, he will order a blood test that screens for antiphospholipids, an antibody that encourages the blood to clot and makes the placenta unable to function properly.

Normally, the baby is properly nourished by the placenta until the second trimester; at this stage of development it is possible for the infant to survive outside the womb. However, impaired function of the placenta will slow the baby’s growth. For this reason, many doctors opt to begin low-dose drug regimens for pregnant women diagnosed with lupus anticoagulant, and pregnancy often requires a cesarean delivery, both to protect the child and keep the mother from the physical stress of a vaginal birth.

Lupus: Anticoagulant During Pregnancy

The good news is, the tendency to lupus is a genetic trait that in some cases may be passed to the child – but lupus itself is not an inherited condition. While premature birth can cause problems such as impaired breathing, jaundice or anemia, this is common to all babies born prematurely, and easily treated at a neonatal care unit. A condition called “neonatal lupus” does sometimes develop in babies born to women with SLE, but this is not true lupus – it causes temporary skin rashes and abnormal blood cell counts, but generally clears up by three months of age and does not reoccur. Rarely, neonatal lupus will cause an irregular heartbeat, which is a permanent condition; however, a pacemaker will correct this problem and allow the child to develop normally.

Steroids such as prednisone are passed to a newborn through the mother’s breast milk, but doctors do not believe these medications, when administered during pregnancy, can get through the placenta to the fetus. The standard lupus anticoagulant pregnancy treatment is low doses of heparin (a medicine that prevents clotting, often delivered as an injection,) sometimes supplemented with baby aspirin.

There are established treatment methods to control lupus anticoagulant in pregnancy, generally tailored to each individual situation by a team of care providers, which might include an obstetrician, hematologist, rheumatologist and surgeon.

Good communication with caregivers and careful compliance with the treatment plan make pregnancy low-risk for women with lupus, and the support of friends and family throughout the pregnancy (and in the exhausting months after the baby is born) make motherhood possible even for those with the systemic form of the disease.

There are several ways to determine whether a book contains reliable information; only some will be listed here. They fall into two broad categories: the reliability of the author and his work, and the relevancy of the information.

To determine the author’s reliability:

1. Look at more than one book on the topic. Compare lupus books by various authors, paying close attention to information that is consistent from book to book. That information is the most likely to be trustworthy.
2. Know the author’s credentials. A doctor is a more reliable source of lupus information than a celebrity, and a specialist can be an even more reliable source than a doctor.
3. Look at the person or agency promoting the book. A book recommended by the Lupus Federation of America is simply more reliable than a book discovered through a Google or Amazon search.
4. Read reviews. A book recommended by a top lupus researcher is a better choice than a book discovered through anonymous commentary on somebody’s website, or promoted in television and radio commercials.

The Latest On Lupus: E-Book Content Should Be Current

Even books written by a respected researcher or physician eventually become unreliable, because scientific studies about lupus, its causes and the best ways to treat it are going on all over the world, and as new information comes in, some of the old information will become inaccurate or outdated.

To determine the relevancy of the information:

1. Look at the copyright date on the bibliography page, opposite the title page at the front of the book. With science and medicine, newest is best – generally speaking, medical information more than a couple of years old is suspect.
2. Look at the citations at the end of the book. The author of a book on lupus will quote from other people’s work; the sources for those quotations will be listed in order of appearance, and the dates the materials were published will be included. A lupus book published last week that cites books written fifteen years ago is not a reliable source.
3. Look at the book’s terminology. A book about a complicated and dangerous disease like lupus should use medical terminology, at least when describing symptoms and possible causes for the disease.
4. Look at the way the information is presented. An author who bases his opinions on scientific studies and presents those ideas clearly and in logical order is more likely to be trustworthy than an author who provokes a strong emotional reaction in readers, or makes wild promises that seem too good to be true.

Medical information should be correct; people’s lives and health depend on its accuracy. Taking a quick look through a book and verifying an author’s credentials are worth the extra time it takes. As the saying goes, an ounce of prevention is worth a pound of cure.

In this lupus screening quiz, “visible symptoms” includes any kind of lupus damage or secondary disease damage on the surface of the skin, or in the nose and mouth.

1. Do you develop patchy rashes on your face or bumps on your skin after being in the sun?

2. Have you suddenly started losing hair, and been unable to explain it?

3. Have you developed sores that won’t heal, especially in your nose and mouth?

4. Have both your legs become swollen at the same time?

 Lupus (SLE) Quiz: Physical Symptoms

In this lupus screening quiz, “physical symptoms” refers to things you can feel inside your body, or behavior and memory problems you can’t easily explain.

1. Have you felt numbness or tingling in your fingers and toes? Are they usually cold, even when the air around you is pleasantly warm?

2. Have you had unexplained weight loss?

3. Do you have pain in your chest or stomach when you take a breath?

4. Have you had a seizure?

5. Have you been foggy and confused for long periods of time, but been unable to explain why?

6. Have you had several days of high fever, but no infection?

7. Have you been exhausted for days or weeks at a time, even when you get lots of sleep?

8. Have your joints felt stiff, tender and achy, especially when you wake up?

Prepare For Your Appointment

When you first meet with a doctor to talk about your symptoms and concerns, it’s helpful to have a few questions prepared, to be sure you get the most out of the visit. (Sort of a “could I have lupus” quiz for your doctor.) Here are a few things you might want to ask:

1.  What tests will I need, and how should I prepare for them?
2. When will I know the results?
3. If I do have lupus, what treatments do you usually recommend?
4. What drugs would you prescribe, and what do they do? What are the side effects?
5. Are there foods, herbs or medications I should avoid? Are there foods or herbs that can help me heal?
6. What should I do if my symptoms get worse?
7. What treatments will my insurance plan cover?

Again, this “do I have lupus” quiz is a beginning step you can take on your own, but it is only a tool to help you identify any unusual symptoms you are experiencing, and prepare you for your first evaluation with your primary care provider. Just remember, it is meant as an initial self-assessment; it cannot and should not take the place of sound medical advice.