In response to a number of questions regarding diagnosing lupus. I would refer you to the excellent resource from the NIH on this site. Basically you must have a certain constellation/combination of symptoms and or signs plus a + ANA ( antinuclear antibody). If this is negative it is fairly certain that you do not have lupus ( there are rare situations where the clinical part is so characteristic and test neg- other studies are then done). A positive test does not ensure lupus either in that there can be false positives (usually low +) or you may have a related disease like scleroderma , sjogren's syndrome and others. Some symptoms of lupus are "soft" (joint pain, fatigue...) but others are more suggestive like protein in urine, pleurisy, abnl blood cells and carry more weight to diagnosis. Tricky but not overly mysterious.View Thread
Lupus patients are rightfully told to avoid the sun since it can flare the disease. But guess what... by doing so you are setting yourself up for Vit d deficiency. Vitmain d is manufactured in your body after sun exposure but can also be taken by mouth. Vitamin d has effects on the immune system, bone health, and cardiovascular problems as well as other effects. You should get at least 1000 IU daily and adults can safely take up to 2000 IU per day. Many multivitamins contain vit d; Check the labels to see how muchView Thread
SLE can be disabling but fortunately not always. While you may think that you are disabled, those that determine it may think otherwise. Commercial policies can differ from SS disability. For Social Security disability you must have documentation of your diagnosis and show severe loss of function in one or more organ systems ( can be due to treatment as well) that is present for more than 3 months and expected to last 12 months. Pain or fatigue as symptoms alone will not be enough. This is not easy to show. In arguable cases some may choose to get an attorney but a well written statement from your treating MD will more likely tip the balance. Since this is outside the scope of usual care your MD may charge for a report of this nature. Having your records sent however should not cost anymore than a copying charge.
Thank you for the personal well wishes. Those that did so are for the core of this website and community and should be lauded for their commitment to helping others. It has been my pleasure to be part of it as well. The time has come though for a new perspective and I am sure that expert Dr S V will add new life to community.View Thread
It is likely that most lupus patients will at some time be taking steroids to control some aspect of their disease. In order to minimize the adverse reactions (which are numerous-- check this out on Webmd site) you should: 1. Always follow your MD's advice on dosage, do not manage this on your own. If it is possible, your doctor may prescribe other medications to allow your dose to be as low as possible to control the disease. This might include "alternate day" regimens, use of skin applied ( topical) steroids for skin disease or use of other "steroid sparing" medications. 2. Take measures to minimize weight gain including exercise and watching your calories. 3. Keep sodium intake low and potassium intake high. Often a diet that is generous in fruits and vegetables will accomplish this. 4. Take Vit D 1000 IU daily along with calcium 1000-1500 mg a day. Your physician may also sometimes prescribe a medicine to help protect your bones. 5. Since steroids make you more susceptible to infection, report high fever T> 102 degrees to your physician. Other symptoms such as severe cough, painful urination might also prompt a call to your MD 6. Do not stop taking steroids suddenly especially if you have been taking them for more than 2 months. 7. Be an educated healthcare consumer and take the time to learn about steroid side effects so that you can report them to you doctor as soon as possible. David Zelman, MDView Thread
Some environmental factors are more established than others. Clearly the evidence for ultraviolet light exposure is the most clear and it is thought that it causes changes in DNA that make it more susceptible to immune response. Also some drugs are associated with lupus like disease. The link for some of the others you mentioned ( hair dye and foods) is not clear and like you say hard to understand.View Thread
the answer is probably to wait and see how you do clinically and then decide later about the CT. Radiologists tend to read more into a film. If you do not do well then call the ENT before the 4 month periodView Thread
Benlysta was recently approved by fda on basis of somewhat underwhelming data that suggest a modest benefit added onto " standard " therapy as defined by investigators performing the study. Excluded from the study were patients with severe kidney and Central nervous system disease.. It's true role has yet to be determined but it is by no means a "game changer".It is also extremely expensive. As a practicing rheumatologist , I was not planning on early adoption of its use and prefer to wait until more is learned about its usefulness and toxicity.View Thread
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