I just had a biopsy done, pictures taken yesterday. This doctor was very kind, but seem to know exactly what I have but is looking on how to best treat it. I had a Dr. Speigle (specialist) in Santa Barbara never having met him in my life, tell me 22 years ago, 6 months after having my daughter and never having met him this. He walked into exam room and his first words were “Boy you look depressed and you know what you have is fatal”. Went on to tell me how great his life is, wrote a book and on his way on a great trip with his wife to Big Sur. I left that appointment in tears on my way to the car, never told anyone not even my husband. I just thought what an unkind, unprofessional man. I work a very stressful job so I just knocked up the rashes to hives. Well, here I am and I do have most syptoms described for the skin type, however I have had numerous kidney stones and have felt lately like another one is trying to pass. I will have confirmation in a week, but am having 2nd spine surgery in August. This is what made me go in, was to make sure rashes won’t delay surgery as I can barely walk. I have always been active in sports, camping and on the go. I can’t say I am shocked maybe a bit relieved to have an explanation but this morning realty has hit. I believe in prayer and will keep all with this disease in my daily prayers. I don’t drink so at least I don’t have to worry about giving that up, but my husband is Italian cooks that way. Hmmmm………. Victoria from SB Prayers for all of you truly.
I believe that we should ALL benefit from regularly working on stress relief! Take care of yourself by adopting stress-relieving strategies, such as exercise, meditation, yoga, art, or whatever works for you. The key is to choose something that you will enjoy and stick with. I personally use a heart rhythm pacer called InnerBalance, an app that coaches you to breathe in line with your heartbeat. Even giving yourself five minutes to sit quietly with a fragrant cup of herbal tea (caffeine-free, of course!) can work wonders for your adrenal glands.
For reasons that doctors still don't understand, the immune system sometimes becomes confused, attacking the body itself, a condition known as autoimmune disease. With lupus,the immune system can attack any organ of the body, including the kidneys and brain, although skin and joints are often most affected, he said. Like many autoimmune diseases, it's more common in women.
A diet high in folic acid, such as found in leafy green vegetables, fruits, and fortified breads and cereals, or a folic acid supplement is important if you are taking methotrexate (Rheumatrex). For nausea caused by medications, eat small frequent meals and foods that are easy to digest. Try dry cereals, breads, and crackers. Also avoid greasy, spicy, and acidic foods.
A primary lymphoid organ located in the mediastinal cavity anterior to and above the heart, where it lies over the superior vena cava, aortic arch, and trachea. The thymus comprises two fused lobes, the right larger than the left. The lobes are partially divided into lobules, each of which has an outer cortex packed with immature and developing T lymphocytes (thymocytes) and an inner medulla containing a looser arrangement of mature T lymphocytes.
A large randomized trial that compared induction therapy consisting of oral mycophenolate mofetil with cyclophosphamide therapy in patients with lupus nephritis showed that mycophenolate mofetil was not inferior to cyclophosphamide.  The investigators suggested that mycophenolate mofetil was associated with both a trend toward greater complete remissions and a greater safety profile.  This study’s findings were confirmed with the large, international Aspreva Lupus Management Study (ALMS) trial. 
Systemic lupus erythematosus is a multisystem inflammatory disease that is often difficult to diagnose. Before the diagnosis can be established, four of 11 clinical and laboratory criteria must be met. Antinuclear antibody titer is the primary laboratory test used to diagnose systemic lupus erythematosus. Because of the low prevalence of the disease in primary care populations, the antinuclear antibody titer has a low predictive value in patients without typical clinical symptoms. Therefore, as specified by the American College of Rheumatology, this titer should be obtained only in patients with unexplained involvement of two or more organ systems. Pa tients with an antinuclear antibody titer of 1:40 and characteristic multiorgan system involvement can be diagnosed with systemic lupus erythematosus without additional testing; however, patients with an antibody titer of 1:40 who fail to meet full clinical criteria should undergo additional testing, including tests for antibody to doublestranded DNA antigen and antibody to Sm nuclear antigen. While an antinuclear antibody titer of less than 1:40 usually rules out systemic lupus erythematosus, patients with persistent, characteristic multisystem involvement may be evaluated for possible antinuclear antibody–negative disease.
Based on the identified evidence the panel concluded that compared with GCs alone, the addition of other IS (CYC, MMF or TAC) is associated with significant benefits, higher remission rates and lower progression rates to end-stage renal disease (ESRD). Head-to-head comparisons between MMF, TAC and high-dose CYC showed that MMF and TAC are associated with less adverse effects than high-dose CYC. Between low and high-dose CYC the balance favours the former because of better safety profile and comparable efficacy, although this conclusion is based on one trial that included predominantly Caucasians. RTX did not provide additional benefits when combined with MMF.
Symptoms vary but can include fatigue, joint pain, a red rash on the face (also called the "butterfly rash") and fever. These symptoms can periodically get worse (flare-up) and then improve. Lupus flares can range from mild to severe, often resulting in periods in which the disease is relatively quiescent. Currently, no cures exist for lupus, and treatment often involves corticosteroids, other immunosuppressants or organ transplants. But research is providing hope for better diagnosis, treatments and even cures.
Jump up ^ Cortés‐Hernández, J.; Ordi‐Ros, J.; Paredes, F.; Casellas, M.; Castillo, F.; Vilardell‐Tarres, M. (December 2001). "Clinical predictors of fetal and maternal outcome in systemic lupus erythematosus: a prospective study of 103 pregnancies". Rheumatology. 41 (6): 643–650. doi:10.1093/rheumatology/41.6.643. PMID 12048290. Archived from the original on 26 January 2016. Retrieved 20 April 2011.
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.
The immune response is how your body recognizes and defends itself against bacteria, viruses, and substances that appear foreign and harmful.The immune system protects the body from possibly harmful substances by recognizing and responding to antigens. Antigens are substances (usually proteins) on the surface of cells, viruses, fungi, or bacteria. Nonliving substances such as toxins, chemicals, drugs, and foreign particles (such as a splinter) can also be antigens. The immune system recognizes and destroys substances that contain antigens. Your own body’s cells have proteins that are antigens. These include a group of antigens called HLA antigens. Your immune system learns to see these antigens as normal and usually does not react against them.
How an autoimmune disease affects you depends on what part of the body is targeted. If the disease affects the joints, as in rheumatoid arthritis, you might have joint pain, stiffness, and loss of function. If it affects the thyroid, as in Graves’ disease and thyroiditis, it might cause tiredness, weight gain, and muscle aches. If it attacks the skin, as it does in scleroderma/systemic sclerosis, vitiligo, and systemic lupus erythematosus (SLE), it can cause rashes, blisters, and color changes.
The most commonly sought medical attention is for joint pain, with the small joints of the hand and wrist usually affected, although all joints are at risk. More than 90 percent of those affected will experience joint or muscle pain at some time during the course of their illness. Unlike rheumatoid arthritis, lupus arthritis is less disabling and usually does not cause severe destruction of the joints. Fewer than ten percent of people with lupus arthritis will develop deformities of the hands and feet. People with SLE are at particular risk of developing osteoarticular tuberculosis.
Chronic fatigue syndrome (CFS) is a disorder that causes extreme fatigue. This fatigue is not the kind of tired feeling that goes away after you rest. Instead, it lasts a long time and limits your ability to do ordinary daily activities. The main symptom of CFS is severe fatigue that lasts for 6 months or more. You also have at least four of these other symptoms:
A nonspecific laboratory test used as a marker of inflammation. In this test, the speed at which erythrocytes settle out of unclotted blood is measured. Blood to which an anticoagulant has been added is placed in a long, narrow tube, and the distance the red cells fall in 1 hr is the erythrocyte sedimentation rate (ESR). Normally it is less than 10 mm/hr in men and slightly higher in women. The speed at which the cells settle depends on how many red blood cells clump together. Clumping is increased by the presence of acute-phase proteins released during inflammation.
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.
Immunosuppressive agents/chemotherapy. In advanced cases of lupus, drugs like azathioprine, methotrexate and cyclophosphamide might be used to suppress the immune system. These types of therapies can help prevent organ damage; however, they do cause severe side effects as well as infertility in women. People on immunosuppressive therapies must be closely monitored by a doctor.
One common early symptom that can be indicative of lupus is a photosensitive rash, meaning a rash that develops in response to sun exposure, particularly on the face and upper arms, says Dr. Kramer. Other early symptoms are unexplained fever and pain, swelling, and stiffness of multiple joints. Complications such as inflammation of the lining surrounding the lungs or heart can also occur early on, he adds.
Next, a doctor will usually prescribe a corticosteroid such as prednisone, which has a variety of unpleasant and dangerous side effects. Long term prednisone therapy can cause muscle wasting and osteoporosis, and those side effects require additional monitoring and medication. If the steroids stop controlling the symptoms, then a host of other serious medications are prescribed that either modulate or suppress the immune system as a whole. Plaquenil and belimumab (Benlysta) are some of the drugs used, and they have very harsh side effects including hair loss, muscle atrophy, blood disorders and increased susceptibility to infections.
Articular cartilage is the highly specialized connective tissue of diarthrodial joints. Its principal function is to provide a smooth, lubricated surface for articulation and to facilitate the transmission of loads with a low frictional coefficient. Articular cartilage is devoid of blood vessels, lymphatics, and nerves and is subject to a harsh biomechanical environment. Most important, articular cartilage has a limited capacity for intrinsic healing and repair. In this regard, the preservation and health of articular cartilage are paramount to joint health.
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.
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.
Therefore, “maintaining good bone health is an area of concern for people with lupus, and a diet rich in calcium and vitamin D can help counteract bone-damaging effects,” Gibofsky explained. These foods might include “milk, light ice cream or frozen yogurt, cottage cheese, pudding, almonds, broccoli, fortified cereal, oranges, yogurt, hard cheese, soybeans and soy milk, navy beans, oysters, sardines, and spinach,” according to experts at Johns Hopkins University School of Medicine.6
With the vast amount of misinformation available online, Gibofsky often sees patients who went on restrictive diets that are purported to reduce lupus symptoms, which they may have read about on the internet or heard about from a neighbor. “Upon further discussion, I find that they do not actually feel better on the diet and, in fact, they have multiple nutritional deficiencies that could actually be the reason behind their worsening symptoms,” she said.
One main type of lupus, cutaneous lupus erythematosus, is limited to skin symptoms, including a rash and lesions. That means people with cutaneous lupus, which does not progress and become systemic lupus erythematosus, only experience skin symptoms. People with cutaneous lupus most commonly develop a discoid rash. It appears as round, raised, red patches and can cause scarring, Dr. Caricchio explains. “It’s often confined to small areas above the neck, such as the ears and scalp,” he says. The rash usually does not itch or cause discomfort.
“It’s always difficult for children and parents to live with the idea that lupus is chronic,” says Pascual. That means the child has many more years worth of living with the condition than if he or she were diagnosed later in life. And because this disease is lifelong and may involve complications such as nephritis, doctors need to manage it aggressively.
Your gut is somewhat permeable to allow very small molecules (micronutrients) pass through the intestinal wall. It’s how you absorb your food. Many factors can damage your gut, including gluten, infections, medications and stress. This damage allows much larger particles such as toxins, microbes, and undigested food particles to “leak through” your gut and enter your bloodstream, triggering an immune response. We know from the research of Dr. Alessio Fasano that leaky gut is a necessary precursor to autoimmunity, meaning if you’re dealing with lupus, you also have a leaky gut. Not to mention, your gut is where nearly 80% of your immune system lives. So in order to overcome lupus, you must first repair your gut.
Flare-ups of lupus can cause acute inflammation and damage to various body tissues and can affect the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Some of the most common symptoms are painful or swollen joints, unexplained fever, kidney problems and extreme fatigue. A characteristic red skin rash – called a “malar” or “butterfly” rash because it roughly mimics the insect’s shape – may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many lupus patients are sensitive to sunlight, skin rashes often develop or worsen after sun exposure.
“There are no foods that cause lupus and no foods that cure it, but eating a well-balanced diet may help combat some of the side effects of medications, as well as alleviate symptoms of the disease,” said Laura Gibofsky, MS, RD, CSP, CDN, a clinical nutritionist at the Hospital for Special Surgery in New York, New York. First, the “Western diet,” consisting of an excess of fatty, salty, sugary foods, has been implicated in autoimmune diseases overall.2 Proper nutrition can also help improve the risk of comorbid diseases that commonly affect patients with SLE.
One food to avoid is alfalfa sprouts. Alfalfa tablets have been associated with lupus flares or a lupus-like syndrome that includes muscle pain, fatigue, abnormal blood test results, and kidney problems. These problems may be due to a reaction to an amino acid found in alfalfa sprouts and seeds. This amino acid can activate the immune system and increase inflammation in people with lupus. Garlic may also stimulate the immune system.
Normally, our immune system produces proteins called antibodies that protect the body from these foreign invaders. When you have lupus, your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues, so autoantibodies are made that damage and destroy healthy tissue (auto means self and anti means against, so autoantibody means against self). These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Angiogenesis is the growth of blood vessels from the existing vasculature. It occurs throughout life in both health and disease, beginning in utero and continuing on through old age. No metabolically active tissue in the body is more than a few hundred micrometers from a blood capillary, which is formed by the process of angiogenesis. Capillaries are needed in all tissues for diffusion exchange of nutrients and metabolites. Changes in metabolic activity lead to proportional changes in angiogenesis and, hence, proportional changes in capillarity. Oxygen plays a pivotal role in this regulation. Hemodynamic factors are critical for survival of vascular networks and for structural adaptations of vessel walls.
Outcomes research seeks to understand the end results of particular health care practices and interventions. End results include effects that people experience and care about, such as change in the ability to function. In particular, for individuals with chronic conditions—where cure is not always possible—end results include quality of life as well as mortality.
The cause of SLE is not clear. It is thought to involve genetics together with environmental factors. Among identical twins, if one is affected there is a 24% chance the other one will be as well. Female sex hormones, sunlight, smoking, vitamin D deficiency, and certain infections, are also believed to increase the risk. The mechanism involves an immune response by autoantibodies against a person's own tissues. These are most commonly anti-nuclear antibodies and they result in inflammation. Diagnosis can be difficult and is based on a combination of symptoms and laboratory tests. There are a number of other kinds of lupus erythematosus including discoid lupus erythematosus, neonatal lupus, and subacute cutaneous lupus erythematosus.
To unravel which people with positive ANA tests actually have lupus, additional blood work can be done. Doctors look for other potentially troublesome antibodies, so they will test for anti-double-stranded DNA and anti-Smith antibodies. These tests are less likely to be positive unless a patient truly has lupus. However, a person who has negative test results could still have lupus, even though this is not so in the case of ANA tests.
The Scientific Advisory Board is comprised of leading lupus experts. Following the first stage of the peer review process, the Scientific Advisory Board conducts a second level of detailed analysis of the projects that are submitted to our organization. The goal is to make a determination about which of these excellent projects should actually be recommended to our board of directors for funding.
Tingible body macrophages (TBMs) – large phagocytic cells in the germinal centers of secondary lymph nodes – express CD68 protein. These cells normally engulf B cells that have undergone apoptosis after somatic hypermutation. In some people with SLE, significantly fewer TBMs can be found, and these cells rarely contain material from apoptotic B cells. Also, uningested apoptotic nuclei can be found outside of TBMs. This material may present a threat to the tolerization of B cells and T cells. Dendritic cells in the germinal center may endocytose such antigenic material and present it to T cells, activating them. Also, apoptotic chromatin and nuclei may attach to the surfaces of follicular dendritic cells and make this material available for activating other B cells that may have randomly acquired self-specificity through somatic hypermutation. Necrosis, a pro-inflammatory form of cell death, is increased in T lymphocytes, due to mitochondrial dysfunction, oxidative stress, and depletion of ATP.
Nonsteroidal anti-inflammatory drugs (NSAIDs): NSAIDs decrease joint swelling, joint pain, fever, and inflammation of the heart and lung linings. These drugs include ibuprofen (brand names Motrin, Advil) and naproxen (Naprosyn, Aleve). Some of these NSAIDs can cause serious side effects like stomach bleeding or kidney damage. Always check with your doctor before taking any medications that are over the counter (without a prescription) for your lupus.
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