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.
SLE is associated with defects in apoptotic clearance, and the damaging effects caused by apoptotic debris. Early apoptotic cells express “eat-me” signals, of cell-surface proteins such as phosphatidylserine, that prompt immune cells to engulf them. Apoptotic cells also express “find-me” signals, to attract macrophages and dendritic cells. When apoptotic material is not removed correctly by phagocytes, they are captured instead by antigen-presenting cells, which leads to development of antinuclear antibodies.
A healing lupus diet can help improve gut health in those with lupus by preventing allergies, reducing deficiencies and slowing down free radical damage. In fact, due to how autoimmune disorders develop, a low-processed lupus diet high in antioxidants is usually key for managing any autoimmune-related symptoms, including those due to arthritis, thyroid disorders, etc., which often overlap with lupus symptoms.
Vegetarian or vegan diets are okay, but you need to take a multivitamin that includes vitamin B12, as this vitamin can only be obtained through animal products. Otherwise you might develop anemia and nerve damage. Also, it’s important to mix your sources of protein so that you get complete proteins – for example rice and beans, or corn and wheat. Animal proteins, dairy, and eggs are complete proteins, but vegetable proteins are generally low in one or more amino acids, which makes them inadequate as sole sources of protein.
Testing for antibody to double-stranded DNA antigen (anti-dsDNA) and antibody to Sm nuclear antigen (anti-Sm) may be helpful in patients who have a positive ANA test but do not meet full criteria for the diagnosis of systemic lupus erythematosus. AntidsDNA and anti-Sm, particularly in high titers, have high specificity for systemic lupus erythematosus, although their sensitivity is low. Therefore, a positive result helps to establish the diagnosis of the disease, but a negative result does not rule it out.46 The CAP guideline recommends against testing for other autoantibodies in ANA-positive patients, because there is little evidence that these tests are of benefit.46
Thinning hair is often one of the first symptoms of lupus. Hair loss is the result of inflammation of the skin and scalp. Some people with lupus lose hair by the clump. More often, hair thins out slowly. Some people also have thinning of the beard, eyebrows, eyelashes, and other body hair. Lupus can cause hair to feel brittle, break easily, and look a bit ragged, earning it the name “lupus hair.”
It’s been found that low levels of vitamin D might be associated with increased risk of autoimmune conditions and other chronic diseases, according to a report published in the International Journal of Rheumatology. (8) If you don’t spend much time outdoors, especially during the winter, talk to your doctor about taking a supplement to prevent vitamin D deficiency.
The erythrocyte sedimentation rate (ESR) test is a blood test that measures inflammation in your body and is used to help diagnose conditions associated with acute and chronic inflammation, including lupus. It is usually used in conjunction with other tests, as the test itself is nonspecific. In other words, it can detect increases in inflammation, but it doesn't pinpoint where the inflammation is or point to a specific disease. Other conditions can affect outcomes of the test as well. The test is one that is usually conducted several times over a certain period to measure changes in 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.
The discovery of the LE cell led to further research and this resulted in more definitive tests for lupus. Building on the knowledge that those with SLE had auto-antibodies that would attach themselves to the nuclei of normal cells, causing the immune system to send white blood cells to fight off these "invaders", a test was developed to look for the anti-nuclear antibody (ANA) rather than the LE cell specifically. This ANA test was easier to perform and led not only to a definitive diagnosis of lupus but also many other related diseases. This discovery led to the understanding of what are now known as autoimmune diseases.
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).
Fernández-Nebro A, Rúa-Figueroa Í, López-Longo FJ, Galindo-Izquierdo M, Calvo-Alén J, Olivé-Marqués A, Ordóñez-Cañizares C, Martín-Martínez MA, Blanco R, Melero-González R, Ibáñez-Rúan J, Bernal-Vidal JA, Tomero-Muriel E, Uriarte-Isacelaya E, Horcada-Rubio L, Freire-González M, Narváez J, Boteanu AL, Santos-Soler G, Andreu JL, Pego-Reigosa JM 2015, ‘Cardiovascular Events in Systemic Lupus Erythematosus: A Nationwide Study in Spain From the RELESSER Registry’, EAS-SER (Systemic Diseases Study Group of Spanish Society of Rheumatology). Medicine (Baltimore), vol. 94, no. 29, viewed 22 September 2017, https://www.ncbi.nlm.nih.gov/pubmed/26200625
The European League Against Rheumatism (EULAR) vaccination recommendations for rheumatic diseases, including lupus, advocate baseline assessment and delivery of nonlive vaccines during stable disease.  Particularly important is immunization against encapsulated organisms, such as meningococcal vaccine, pneumococcal vaccine, and routine Haemophilus influenzae childhood vaccination. Annual influenza vaccine is also encouraged.
“I tend to suffer from fatigue. About a year ago I made some changes to my diet; I cut out as many processed foods as I could and now start the day with porridge with blue/red fruits (i.e. blackberries, blueberries or cranberries). I now go to bed and get up at the same times every day and I started walking everyday too. I feel much better and sleep better too.”
SLE is regarded as a prototype disease due to the significant overlap in its symptoms with other autoimmune diseases. This means that it is an important area of continued research and study that is utilizing diverse techniques such as GWAS, microarrays, and murine studies. Further genetic studies of multiple ethnic groups and the creation of disease models incorporating environmental influences will help to increase and refine the understanding of specific genes, linkages, as well as the mechanisms underlying the disease.
“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.
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