“My message to patients is that we can do an excellent job of managing the condition compared to 20 years ago,” says Roberto Caricchio, MD, the interim section chief of rheumatology at Temple University Hospital in Philadelphia and the director of the Temple Lupus Clinic at the Lewis Katz School of Medicine. With that said, people should never underestimate the serious effects lupus can have, he adds, which is why working with your doctor to manage the condition is so important.
Many people living with lupus are photosensitive or sensitive to the sun and fluorescent lights. It is recommended that all people living with lupus wear sunscreen. Sunscreens, greater than SPF 30, are vital in protecting patients from UVA and UVB rays which provoke skin rashes, lesions and other lupus disease activity. Patients should also avoid excess sun exposure by wearing sunscreen, wide-brim hats, avoid sunlight during peak hours of UV exposure (10:00 am - 2:00 pm) and wear tightly woven clothing.
The male hormone DHEA (dehydroepiandrosterone), produced in the adrenals, seems to help and may reduce the need for prednisone. Although DHEA is available over-the-counter, don’t take it without medical supervision. It presents an increased risk of heart attack and breast and prostate cancer so it is vital that a physician monitor anyone taking it for lupus. Furthermore, over-the-counter brands of DHEA may not be as reliable as prescription forms.
Note: Ultimately, in patients with kidney disease from systemic lupus erythematosus (lupus nephritis), a kidney biopsy may be necessary to both define the cause of the kidney disease as being lupus-related as well as to determine the stage of the kidney disease in order to optimally guide treatments. Kidney biopsies are often performed by fine-needle aspiration of the kidney under radiology guidance, but in certain circumstances, a kidney biopsy can be done during an open abdominal operation.
Subacute cutaneous: The skin symptoms of subacute cutaneous lupus are usually mild. People with this condition, which is also its own form of lupus, present with reddish-purple plaques, which are firm and raised, flattened skin lesions. These plaques can be found alone or in groups and range in size from 5 mm to 20 mm, usually appearing on the trunk, including the upper chest and back. About 10 percent of people with SLE have subacute cutaneous lupus. Certain drugs may also cause subacute cutaneous lupus.
Because the antibodies and accompanying cells of inflammation can affect tissues anywhere in the body, lupus has the potential to affect a variety of areas. Sometimes lupus can cause disease of the skin, heart, lungs, kidneys, joints, and/or nervous system. When only the skin is involved by rash, the condition is called lupus dermatitis or cutaneous lupus erythematosus. A form of lupus dermatitis that can be isolated to the skin, without internal disease, is called discoid lupus erythematosus. When internal organs are involved, the condition is referred to as systemic lupus erythematosus (SLE).
I recommend having your MTHFR genes tested, as this genetic mutation can impact how you detoxify mercury and other heavy metals. There are multiple options for heavy metal testing, however I’ve found the DMPS “challenge” test to be the gold standard. To assess whether someone is being exposed to mycotoxins, I use the test from Real Time Lab. If either heavy metals or mycotoxins are an issue for you, work on minimizing your exposure to these toxins, and be sure to support your detox pathways while you work to flush them out.
Genetics Doctors and researchers believe a genetic predisposition may contribute to the development of lupus, says Kaplan. Dozens of genetic variations have been found to be associated with the disease, affecting who gets it and how severe those cases are, according to the Lupus Foundation of America. That means the disease is hereditary, making parents more likely to pass it to their children. But just because you are genetically predisposed to the condition, doesn’t necessarily mean you’ll get it.
Research and documentation of the disease continued in the neoclassical period with the work of Ferdinand von Hebra and his son-in-law, Moritz Kaposi. They documented the physical effects of lupus as well as some insights into the possibility that the disease caused internal trauma. Von Hebra observed that lupus symptoms could last many years and that the disease could go "dormant" after years of aggressive activity and then re-appear with symptoms following the same general pattern. These observations led Hebra to term lupus a chronic disease in 1872.
Another new B-cell-suppressing treatment is belimumab (Benlysta). Belimumab blocks the stimulation of the B cells (a B-lymphocyte stimulator or BLyS-specific inhibitor) and is approved for the treatment of adults with active autoantibody-positive systemic lupus erythematosus who are receiving standard therapy. It is important to note that the efficacy of belimumab has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus. Belimumab has not been studied in combination with other biologic therapies or intravenous cyclophosphamide.
For resistant skin disease, other antimalarial drugs, such as chloroquine (Aralen) or quinacrine, are considered and can be used in combination with hydroxychloroquine. Alternative medications for skin disease include dapsone and retinoic acid (Retin-A). Retin-A is often effective for an uncommon wart-like form of lupus skin disease. For more severe skin disease, immunosuppressive medications are considered as described below.
This gene encodes a member of the interferon regulatory factor (IRF) family, a group of transcription factors with diverse roles, including virus-mediated activation of interferon, and modulation of cell growth, differentiation, apoptosis, and immune system activity. Members of the IRF family are characterized by a conserved N-terminal DNA-binding domain containing tryptophan (W) repeats. Alternative promoter use and alternative splicing result in multiple transcript variants, and a 30-nt indel polymorphism (SNP rs60344245) can result in loss of a 10-aa segment.
The severity of lupus varies from mild to life threatening. Kidney problems and neurologic complications are more dangerous than the rashes, arthritis or other symptoms. After many years of having lupus, patients may develop hypertension (high blood pressure), accelerated atherosclerosis (plaque and fat build-up in the arteries), heart and lung diseases, kidney failure or osteoporosis. With proper treatment, the majority of people diagnosed with lupus have a normal life expectancy, but many will experience disabilities. Each patient will likely have his or her own specific pattern of symptoms and flares, but the disease can change over time.
While there is no cure for lupus, there are treatments that can help prevent flares, treat symptoms and reduce organ damage. Early diagnosis and treatment is the key to successful management of lupus. Treatment depends on the type and severity of the symptoms. Like all medications, these treatments have potential side effects. It is very important that you communicate with your health care professional about the potential benefits and potential side effects of any treatment.
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migraines. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well.
Cardiac tamponade is pressure on the heart that occurs when blood or fluid builds up in the space between the heart muscle (myocardium) and the outer covering sac of the heart (pericardium). This prevents the heart ventricles from expanding fully. The excess pressure from the fluid prevents the heart from working properly. As a result, the body does not get enough blood.
When the kidneys or central nervous systems are affected immunosuppressive drugs such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept) may be used. These drugs restrain the overactive immune system by blocking production of immune cells. Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risks increase with the length of treatment.
A diet high in omega-3 fatty acids may help to mitigate inflammation. Although omega-3s have not been adequately studied in lupus, studies of the general population suggest that these essential fatty acids may also boost mood and improve cardiovascular health. Fish, nuts, and flax are excellent sources of omega-3s and can be easily incorporated into everyday meals. Try to avoid saturated fats, such as those in beef and fried snack foods, since these fats are known to increase the risk of cardiovascular disease and may actually stimulate the immune system.
If you plan to add herbs, dietary supplements, or vitamins to your diet, you should discuss your decision with your lupus doctor first. This is especially important as herbs or supplements may interact with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines prescribed to control symptoms of lupus or medication side effects.
No overarching diet exists for people with lupus. However, lupus is a systemic disease, so maintaining good nutritional habits will help your body remain as healthy as possible. Generally, doctors recommend a diet composed of about 50% carbohydrates, 15% protein, and 30% fat. However, since people with lupus often experience symptoms like weight loss or gain, inflammation, osteoporosis, kidney disease, high blood pressure, and atherosclerosis, certain specific nutritional concerns may also need to be taken into consideration. If you need help managing your weight or making healthy food choices, please speak with your doctor. S/he can give you more specific information and refer you to a registered dietitian if needed.
These are low in nutrients and may also contribute to poor digestion, weight gain, inflammation and other symptoms. Most also contain gluten, a type of protein found in wheat, barley, rye and most flour-containing products. Gluten sensitivity or intolerance is common in those with autoimmune disorders because gluten can be difficult for many people to digest properly, increasing leaky gut syndrome and triggering symptom flare-ups. (6)
Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs, such as naproxen sodium (Aleve) and ibuprofen (Advil, Motrin IB, others), may be used to treat pain, swelling and fever associated with lupus. Stronger NSAIDs are available by prescription. Side effects of NSAIDs include stomach bleeding, kidney problems and an increased risk of heart problems.
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