| Frequently Asked Questions What is lupus?
Lupus is a chronic (long-lasting) autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. This attack results in inflammation and brings about symptoms.
Where did the name come from?
Lupus is the Latin word for wolf. The term has been associated with the disease since the 10th century, though the reasons are unclear. Erythematosus means redness. It is speculated that the name was given to describe the skin lesions (sores), which typically are red and perhaps at that time in history were thought to resemble the bite of a wolf. Today we know that not everyone with lupus has rashes or skin lesions, and those who do would not say their rashes look anything like a wolf bite.
Who gets lupus?
Lupus can occur at any age, and in either sex. Nine out of ten people with lupus are women. During the childbearing years (ages 15-44) lupus strikes women 10-15 times more frequently than men.
People of all races can have lupus; however, African American women have a three times higher incidence (number of new cases) and mortality than Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications. Lupus is also more common in women of Hispanic, Asian, and Native American descent. Is lupus contagious?
No, not even through sexual contact. Is lupus a fatal disease?
Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, from mild with infrequent flares to some who have severe cases which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease.
People frequently read that 80-90% of people with lupus live for more than ten years. It is important to understand that the "10 years" does not represent the number of years the person will live, but rather the number of years involved in the study. The studies followed patients with lupus from the time of diagnosis for ten years. At the end of this period they were able to conclude that 80-90% of the people enrolled were still alive. We know there are many people who have been living with lupus for 15, 19, 25, 30 and 40 years. Lupus is not a disease that is universally fatal and the majority of people with lupus can expect to live a normal lifespan.
When people die of lupus, what do they usually die of?
Overwhelming infection and kidney failure are the two most common causes of death in people with lupus. Lupus and cancer Is lupus a form of cancer?
No, lupus is not a form of cancer. It is an autoimmune disease.
Are people with lupus more likely to develop cancers?
People with lupus are no more likely to develop cancer than are people in the general population. However, people who have received certain chemotherapy drugs do carry the added risk of developing cancer sometime later in life.
Is lupus like AIDS?
No. In AIDS (Acquired Immune Deficiency Syndrome) the immune system is under active; it is deficient. In lupus the immune system is overactive, producing large quantities of antibodies. AIDS is contagious but lupus is not. The majority of people diagnosed with AIDS die from their disease whereas the majority of people with lupus can expect to live a normal lifespan. Is there a connection between MS and lupus?I was diagnosed with MS 3 years ago and now my doctor thinks I may have lupus.
Multiple Sclerosis and lupus are both autoimmune diseases. They are diagnosed and treated in very different ways. There is no direct connection between the two, however, lupus, known as a great imposter, can sometimes mimic or imitate the symptoms of MS.
My child has lupus. What is the prognosis?
The prognosis for children and adolescents with systemic lupus has improved dramatically over the past twenty years. With modern therapy, children do nearly as well as adults. LUPUS OF THE SKIN What are the symptoms of cutaneous lupus?
The symptoms of cutaneous lupus may include a variety of different looking skin rashes, photosensitivity (where exposure to ultra-violet light triggers a rash), and sometimes ulcers on the inside of the nose or mouth.
How is cutaneous lupus diagnosed?
Cutaneous lupus, because of the great deal of variability in the way that the skin rashes may appear, can be quite difficult to diagnose. However, a skin biopsy may be performed and this may be diagnostic.
What kind of Doctor specializes in cutaneous lupus?
A dermatologist specializes in diseases of the skin, hair and nails. Cutaneous lupus is one of hundreds of diseases that involve these areas.
How is cutaneous lupus treated?
Treatment of cutaneous lupus may include corticosteroid creams or ointments applied to the rash or lesions. If the lesion does not respond to cream or ointment, the doctor may prescribe injections of corticosteroids directly into the lesion. If a person has particularly widespread lesions, oral corticosteroid medications may be prescribed or the doctor may prescribe anti-malarial medications such as Plaquenil (hydroxychloroquine).
In addition to these medications, sunscreens are an important part of the prevention of photosensitivity (where skin exposed to ultra-violet light reacts by developing a rash) reactions that may occur with cutaneous lupus lesions.
How is cutaneous lupus different from systemic lupus?
Cutaneous lupus is confined to the skin, whereas systemic lupus may involve not only the skin but any of the other organ systems in the body.
Can cutaneous lupus turn into systemic lupus?
In approximately 10% of the cases of cutaneous lupus, it evolves and develops into systemic lupus. However, this can't be predicted or prevented from happening.
What is photosensitivity and what are photosensitivity reactions?
Photosensitivity is sensitivity to the UV (ultra-violet) rays from the sunlight and other UV light sources. Photosensitivity reactions typically include a rash, but may also trigger fever, fatigue, joint pain and other symptoms of SLE. In some cases, sun exposure has resulted in the onset of kidney disease. DRUG-INDUCED LUPUS
What is the difference between drug-induced lupus (DIL) and systemic lupus?
Systemic lupus is irreversible, whereas drug-induced lupus generally is reversible when the drug is discontinued. The symptoms of drug-induced lupus generally DO NOT include kidney involvement or central nervous system involvement
What drugs are most commonly associated with drug-induced lupus (DIL)?
There is just a short list of medications for which there is DEFINITE PROOF of an association with drug-induced lupus.
Procainamide (pro-can-a-mide) brand names Procan or Pronestyl used for heart rhythm abnormalities
Hydralazine (hi-dral-a-zine) brand name Apresoline or Apresazide used for high blood pressure
Isoniazid (i-so-nye-a-zid) brand name INH used for tuberculosis
Quinidine (quin-i-dean) used for heart rhythm abnormalities
Phenytoin, brand name Dilantin used for convulsive disorders (seizures).
Are there other drugs that might cause DIL?
The overwhelming majority of cases of DIL are due to one of the 5 drugs mentioned earlier. There are other drugs, which might POSSIBLY be associated, but there is not yet definite proof of an association between them and drug-induced lupus. Check with your doctor to see if you are on any medication that might possibly explain your symptoms.
Should people diagnosed with SLE or Cutaneous lupus avoid taking the drugs associated with DIL?
Most of the drugs associated with DIL can be safely used in people with SLE or cutaneous lupus if there are no suitable alternatives.
How soon after taking the drug do the symptoms appear?
Drug-induced lupus requires months to years of frequent exposure to a drug before symptoms appear.
How soon after discontinuing the drug will the symptoms go away?
It varies from days, to weeks, to months. Usually symptoms fade after six months. The ANA may remain positive for years.
CAUSES What causes lupus?
The exact cause of lupus is unknown. It is likely to be due to a combination of factors. For example, a person's genetic make-up and exposure to certain unknown trigger factors may provide the right environment in which lupus can develop.
Is it hereditary?
We suspect (but do not have scientific proof) that people inherit something from their parents that predisposes them to develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more susceptible. At the present time, there are no genetic tests to determine who is susceptible and who is not.
Where is genetic research being done?
Several researchers are doing Linkage Studies to evaluate families in which more than one member has lupus. They hope to be able to identify a gene or genes that are responsible for lupus. Undoubtedly the resources of all of these groups will eventually be pooled, but there is much to be gained from the current phase of multiple independent efforts. Participation in multiple studies is encouraged. A listing of studies is in the research section. Can I have my children tested?
Testing isn't advisable in individuals who do not have symptoms. What can trigger lupus?
It is believed that certain things may trigger the onset of lupus or cause lupus to flare. Trigger factors include:
Ultra-violet (UV) light
Certain prescription drugs
Infection
Certain antibiotics
Hormones Although there is no scientific evidence, it is possible that extreme stress may play a role in triggering lupus.
Is lupus stress related?
We do not know for certain. There are many anecdotal reports (personal accounts) of lupus flaring during or after a stressful time, but this question requires further scientific study.
Are flares related to hormones?
We do not know for sure. There are many anecdotal reports (personal accounts) of lupus flaring with pregnancy, the menstrual cycle, birth control pills, and hormone replacement therapy. We suspect that hormones play a role, but we don't know precisely what the role is. Lupus has a 9:1 female to male ratio so it is likely that hormones play a role, perhaps by influencing the immune system. Also, we know that female hormones have a definite effect on lupus mice used in research.
Are there any medications people with lupus should avoid?
There are no absolute contraindications to needed and appropriate medications for a person with systemic lupus. Your doctor should watch for allergic reactions to medications, and watch for any connection between flares and estrogen or oral contraceptives.
People with lupus should be especially careful if they are prescribed sulfa antibiotics. These medications (Bactrim, Gantrisin, Septra) are often prescribed for urinary tract infections and may cause an increase in sun sensitivity and occasionally lower blood counts resulting in disease flares. People with known sulfa allergy are advised not to use Celebrex, a nonsteroidal anti-inflammatory drug. There are also sulfa diuretics (water pills) such as Dyazide and diabetic drugs containing sulfa such as Aldactone.
Does lupus occur more often in certain geographical areas?
No.
Is lupus related to pollution or toxic chemicals?
We do not know. The cause of lupus, and many other autoimmune diseases, remains unknown. The respective roles of genetic and environmental factors in triggering lupus remain to be determined. The National Institutes of Health (NIH), the principal biomedical research agency of the United States Government established the National Institute of Environmental Health Sciences (NIEHS) to study issues related to environmental health.
Can something in your diet cause lupus?
We do not believe so. Is there any connection between Silicone breast implants and lupus?
There has been a great deal of interest in this issue and since 1992 there have been numerous well controlled research studies that have looked at this question. None has shown a clear association between silicone breast implants and the development of lupus disease.
If I have my implants removed, will my lupus symptoms improve, will the lupus go away?
We don't know. There have been reports of women who had silicone breast implants removed and their symptoms improved. On the other hand, there have been cases where symptoms have not improved after removal.
Is it true that lupus can be caused by the artificial sweetener, aspartame?
We are aware of an email message circulating on the Internet warning individuals with lupus about dangers associated with using the artificial sweetener aspartame. The Lupus Foundation of America consulted with the chair of the LFA Medical Council, Evelyn Hess, MD, MACP, MACR. Dr. Hess is one of the nation's leading researchers in the field of lupus specializing in environmental influences. According to Dr. Hess, there is, as of now, no specific proof of an association with aspartame as a cause or worsening of SLE.
People with lupus should always consult with their physician before making any changes in their medical treatment, diet, exercise or other routine based on information received via the Internet or other sources lacking known credentials. DIAGNOSISIs there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus.
Why is systemic lupus so difficult to diagnose?
It is difficult for a number of reasons: - Systemic lupus is a multi-system disease, and before a multi-system disease can be diagnosed, there have to be symptoms in many parts of the body and lab work that supports the presence of a multi-system disease.
- Systemic lupus is also difficult to diagnose because it is a disease that does not typically develop rapidly, but rather develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present.
- Systemic lupus is known as a Great Imitator because it mimics so many other diseases and conditions.
- Systemic lupus is difficult to diagnose because there is no single diagnostic test for lupus. In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet NOT have the disease.
My Doctor said my lupus test came back "borderline positive." What does this mean?
The screening test for lupus is called the ANA (antinuclear antibody). All lab tests have normal values. If a test result comes back and the value is at the upper limit of normal, this is often referred to as being on the border or borderline. These results are often very difficult to interpret; and the assessment of its importance is dependent on meeting other criterion. It is likely that a borderline positive ANA assumes more importance if other criteria are also present.
What does it mean when I'm told my ANA was positive, but I don't have lupus?
My Doctor thinks I have a connective tissue disease rather than lupus. What does he mean?
Connective tissue includes joints, tendons, cartilage, collagen, muscles and skin. There are a number of connective tissue diseases; rheumatoid arthritis, scleroderma, Sjogren's syndrome, Raynaud's phenomenon, vasculitis, polymyositis and dermatomyositis. It is not uncommon for a person to have symptoms that indicate a connective tissue disease, but not enough symptoms to clearly specify a particular disease.
Is it possible to have lupus with a negative ANA? I was told my ANA was negative, and I don't have lupus. Approximately 95% of people with systemic lupus have a positive ANA. Only a small percentage have a negative ANA, and many of those have other antibodies detected in their blood (antiphospholipid antibodies, anti-Ro, anti-SSA). Sometimes the ANA will convert from positive to negative following administration of steroids, cytotoxic medications or uremia (kidney failure).
What kind of Doctor can diagnose systemic lupus?
If multiple criteria are present simultaneously, the diagnosis may be made by any physician (Family Practitioner, Internist, Pediatrician). If however, as is often the case, symptoms develop gradually over time, the diagnosis may not be as obvious and consultation with a rheumatologist may be needed.
My doctor suspects that I may be developing lupus, but I don't satisfy enough criteria to be diagnosed. Is there anything I can do to slow its development or prevent it from occurring?
If you are indeed developing lupus, there is no known way of arresting it. You can, however, be an active participant in your well being by: - learning as much as you can about lupus so if you develop further symptoms, you will recognize them and notify your doctor,
- eating a well balanced diet,
- managing stress more effectively, and
- following your doctor's advice.
I was told my ANA was positiv, but my doctor thinks I have fibromyalgia and not lupus. What does this mean?
Patients with positive ANA's and muscle and joint pain do not necessarily have lupus. Fibromyalgia, which is also common in women, sometimes explains the widespread pain. LIVING WITH LUPUS
I was diagnosed with systemic lupus. Are there any do's or don'ts with regard to diet?
There is no such thing as a lupus diet. People with lupus should consider following a diet such as the American Heart Association's diet or the American Cancer Society diet. These are both well-researched diets that have common components, they are low in fat, low in sodium, high in fiber, low in refined sugars. They are also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your lupus symptoms, you should certainly avoid eating those foods.
Alfalfa sprouts are in the legume family and contain an amino acid, L-canavanine. It can stimulate the immune system in people with lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts. Check labels on health food packaging as alfalfa may also be found as an ingredient in food products. Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided.
Exercise - Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being. Fatigue - When your lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease.
Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you do need to gradually resume your normal activities slowly over a period of time. This may require naps during the day-a brief cat nap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you don't exhaust yourself.
Medications - Be sure and take your medications as prescribed by your doctor. If you develop any side effects make sure you let your doctor know what they are. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. Also, ask how long before you should see the effects of the medication and if you find it's not working within the time frame, let your doctor know.
Work schedule -The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability. How can I tell if my lupus is active?
When a lupus flare occurs, people will usually notice a return of the symptoms they experienced previously, but sometimes they will notice new symptoms. These may include, but are not limited to: Fever
Swollen joints
Increase in fatigue
Rashes
Sores or ulcers in the mouth or nose
A temperature over 100 degrees, not due to an infection, is often a helpful sign in identifying a flare. When should I call the Doctor?
You should call the doctor about any change in symptoms or worsening of your lupus as soon as possible. You should also be aware that there are certain symptoms that may require that you see your doctor immediately. These symptoms or signs include the following: Blood in your stool or vomit -you should call your doctor and let him/her know immediately
Severe abdominal pain
Chest pain
Seizures
New onset of a fever or if your fever is much higher than it usually is
Excess bruising or bleeding anywhere on your body
Confusion or mood changes
A combination of symptoms such as severe headache with neck stiffness and fever.
This combination could be serious and you need to let your doctor know immediately. There are other reasons why you should call your doctor. For example, if the doctor has put you on a new medication and you've been taking it as prescribed, and for the period of time prescribed and your symptoms are no better or they are worse, you need to let the doctor know. How long will a flare last? How long will a remission last?
There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long a remission will last when it comes. It is frequently said about lupus that the only thing that is predictable about lupus is it's unpredictability. I've had lupus for 2 years and haven't had a remission yet. Is this possible?
Yes. Lupus takes a highly variable course. Some people will have a course where their lupus flares-up and then simmers down and goes into remission. On the other hand, some have a more chronic (long-lasting) course where they have a chronic state of flare and have symptoms day-in and day-out. What can I expect in the future? Will I be able to have a family?
Unless there is moderate to severe organ involvement or a person must take immunosuppressive immunomodulating medications that would place the mother at risk, there is no reason why a woman with lupus should not get pregnant. You must be aware, however, that there is an increased risk of disease activity either during or three to four weeks after pregnancy and, therefore, all women with lupus who are pregnant must be closely monitored by an obstetrician who is thoroughly familiar with high risk pregnancy as well as their lupus doctor. Statistically, 50% of all lupus pregnancies are completely normal, 25% will deliver normal babies prematurely and the remaining 25% will experience either a miscarriage or a fetal death.
Years ago women with lupus were advised not to have children. However, with the advances in diagnosis and treatment of lupus, unless there is moderate to severe organ involvement, there is no absolute reason why a person with lupus should not get pregnant.
Will I be able to continue working full-time?
Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there is no real way of predicting what your course of lupus will bring in the future. Some find they have to cut back to part-time or try modifications of their work environment or schedule, some find they have to take a leave of absence for a period of time, others may find their lupus activity is such that they are unable to continue with working, and some may go on disability.
Will I live long enough to see my children grow up?
The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal lifespan.
Will I become crippled and end up in a wheelchair?
People are frequently concerned that the arthritis associated with lupus will result in crippling deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular necrosis of bone, related to steroids and lupus, may occur and require total hip or knee replacement surgery.
I have heard that dental fillings may trigger lupus. Is there anything to this?
At the present time, we do not have any scientific data that indicates that dental fillings may act as a trigger of lupus. In fact, it is highly unlikely that dental fillings aggravate or cause SLE. I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair?
One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association and no recent evidence has been reported. The initial study findings are of uncertain significance and most physicians do not feel that hair dye is risky for people with lupus. Can lupus cause memory problems?
At some point during the course of their lupus, up to 50% of lupus patients describe feelings of confusion, fatigue, memory impairment, and difficulty expressing their thoughts. This collection of symptoms is called "cognitive dysfunction" and is found in people with mild to moderately active SLE. TREATMENT
How is lupus treated?
The majority of symptoms of lupus are due to inflammation and so the treatment is aimed at reducing that inflammation. This can be done through a number of different medications. There are four families of medications used in the treatment of lupus. They include: - Nonsteroidal Anti-inflammatory Drugs - drugs such as ibuprofen (Advil & Motrin), naproxen, (Naprosyn & Aleve), sulindac (Clinoril), piroxicam (Feldene), diclofenac (Voltaren) to name a few. The Cox-2 selective NSAIDs include: celecoxib (Celebrex) and rofecoxib (Vioxx).
- Corticosteroids - drugs such as prednisone, prednisolone, medrol, deltasone, cortisone and others.
- Anti-malarials - these have been found to be effective in treating the joint pain, skin rashes and ulcers that some people develop on the inside of their nose or mouth. Plaquenil (hydroxychloroquine) is probably the most commonly prescribed anti-malarial drug in the United States. There is no known relationship between lupus and malaria.
- The fourth family of medications, immunosuppressants (or immunomodulating) /chemotherapy, is generally reserved for those individuals who have the most severe flares of lupus; or to enable the steroid dose to be reduced. A severe flare is one that affects an organ to the degree that the function is impaired. When this happens something has to be done to preserve the function of the organ and that's when immunosuppressive or chemotherapy medications are prescribed. These actually suppress the over activity of the immune system brought on by the lupus, and help limit the damage and preserve the function of the involved organ. (Lupus is NOT a form of cancer).
Since individuals respond differently to medications, it may take time before you are able to determine, through trial & error, which medication at which dose provides relief of the symptoms of lupus. Frequently physicians will try one medication see how it works and if it doesn't work, they may have to change the dose or switch to another medication.. I don't want to go on prednisone. Are there any other treatments available?
In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs, anti-malarial medications, and chemotherapy drugs. There can be situations where steroids are the best choice of therapy and the other medications are not indicated or are ineffective.
What can I do about the weight gain brought on by the prednisone?
Increased appetite is well recognized as a side effect of corticosteroid therapy. Often times, just being aware that this increase in appetite may occur with the steroid therapy, is the first step towards managing the potential weight gain. If you have to go on steroids or if you have to increase your dosage of steroids, you may want to consider planning out a healthy diet during the time you're taking steroids and making sure that you stick to it. During those times, however, when you're really hungry, here are some things you can do to combat the munchies: - Drink a large glass of low sodium vegetable juice cocktail
- Eat a bowl of air popped or low fat microwave popcorn
- at a plate of raw vegetables dipped in fat-free sour cream
- If you can, go for a walk
- Drink a cup of decaffeinated flavored coffee with low fat milk
These are low fat substitutions, which can reduce your overall caloric intake and hopefully curb your weight gain. Taking steroids can also increase water weight gain. You can help to cut down the amount of fluid retention by reducing your sodium and/or salt intake. This can be accomplished by avoiding processed or convenience food whenever possible. If you are going to be eating convenience or processed foods, check the label and make sure that no item contains more than 200 mg of sodium per serving. Or if you are eating a whole frozen dinner, for example, try and stay between 500 and 700 mg of sodium. If you can avoid processed meats such as luncheon meats, sausages or bacon, you'll be reducing your sodium intake and that's good. If you have a choice among fresh, frozen or canned vegetables, stay away from the canned and choose fresh or frozen because they are lower in sodium.
Do you recommend any herbs or vitamins for the treatment of lupus?
We do not recommend any specific herbs or vitamins. There is a great deal of interest in herbal medicine and vitamin therapy. However, this is an area that really requires further scientific study. There are many anecdotal reports of people who took a certain vitamin or herb and felt that it helped improve their lupus. However, you have to be careful because some herbs have been shown to contain dangerous contaminants. With vitamin therapy, you have to be careful of not overdosing.
In general if you are concerned about having adequate quantities of vitamins in your diet, you can take a single multi-vitamin per day. Calcium supplements, to prevent osteoporosis (bone thinning), are a good idea. Patients who are prescribed methotrexate are often told to further supplement their diet with folic acid. Where is the BEST place to go for diagnosis and treatment of lupus?
There is no one single recognized center of excellence for the treatment and diagnosis of lupus in the United States today. The Lupus Foundation of America has no mechanism by which it can rate either hospitals or physicians. The general recommendation is to find a physician that is affiliated with a medical school -a university hospital for example. These health care institutions may have faculty on staff who are involved in lupus research, and are generally the most up-to-date on the latest advances in diagnosis and treatment of lupus. These are generally regarded as very good places to go for the diagnosis and treatment of lupus. ALTERNATIVE MEDICINE Is massage safe for people with lupus?
Yes. If you find that it helps, then good. If you find that it is not helpful, then you should avoid it.
Is acupuncture helpful to people with lupus?
There have been anecdotal reports from people stating that they received acupuncture and believed they benefited from it. This is an area of alternative medicine that requires further controlled scientific studies before we can say whether or not acupuncture is helpful in treating the symptoms of lupus. However, there are studies that show acupuncture can be effective in back pain and fibromyalgia.
Does the Lupus Foundation have any recommendations regarding alternative and unproven treatments that are often advertised?
The LFA is frequently asked about alternative therapies for the treatment of lupus. Although we remain hopeful that newer more effective therapies will be developed, we must be cautious regarding products that have not been approved by the Food and Drug Administration (FDA).
Unsubstantiated Remedies
It is the policy of the Lupus Foundation of America not to make recommendations concerning medications or products that have not been approved by the FDA or the American College of Rheumatology (ACR) for the treatment of lupus.
Evaluation of medications/products by the scientific method is at the present time the best way to prove effectiveness and safety. We urge people with lupus to ask the manufacturer/distributor of any product: what is their proof, other than testimonial, that the product is safe and effective for lupus? If the product has not been approved by the FDA, we cannot vouch for the claims made for the purity, safety, or effectiveness of these substances. Some products may have unlabeled substances such as alfalfa or sulfa that may be harmful to patients with lupus.
RESEARCH What kind of research is being done on lupus?
There is a good deal of interest in lupus. Research can be divided into two types: basic or clinical. Much of the lupus research is considered to be basic, where scientists attempt to develop or refine theories (concepts, beliefs, principles) of how the body works and how the immune system functions. Basic research is conducted in the laboratory and generally does not involve the use of human subjects. We are lucky to have animal models of SLE (mice with lupus) so that research into the cause of lupus and better treatments can be investigated more easily.
Clinical research involves the study of humans and how they act or react to certain factors. It includes applying or testing theories and evaluating their usefulness in solving clinical problems.
Each year the American College of Rheumatology publishes a listing of summaries (abstracts) of research projects. In a typical year, there are over 200 research abstracts listed that pertain to lupus. The majority of the studies are basic research. Published research studies can be found using the National Library of Medicine's web site.
Does the Lupus Foundation of America (LFA) do research?
A primary focus of the LFA is to encourage research related to the causes, treatments, prevention, and cure of lupus. The LFA directly sponsors "seed" research monies to test new approaches and develop experimental prototypes that may be presented for larger-scale funding through public or other sources. This research program is supported exclusively through donations from the LFA's more than 50 chapters, private foundations and corporations, and the concerned public. It is the LFA's hope that this investment in research will produce new information which may directly lead to much larger projects and substantially increased funding from other sources, particularly the National Institutes of Health. How close are we to a cure?
It is difficult to know. Just as an automobile mechanic must understand how a car engine works before he/she can fix it, we must have a broader and more in-depth understanding of how the immune system works before we can find the cure. We must also continue to look for other causes such as a virus that can cause lupus.
WORK - INSURANCE – DISABILITY Is lupus included in the Americans with Disabilities Act (ADA)?
The language of the American's with Disabilities Act was written in broad terms and therefore, most illnesses are included. Contact the Job Accommodation Network to learn more about the ADA, how it applies to your work situation and what is required of the employee and employer to be in compliance with the law.
The Job Accommodation Network(JAN) is a free service of the U.S. Department of Labor, Office of Disability Employment Policy, and provides information about job accommodations, the Americans with Disabilities Act (ADA), and the employability of people with disabilities. You can call the JAN via toll free numbers and speak to a counselor about your situation. Is there a list of insurance companies that cover lupus?
The LFA doesn't have a list of insurance companies that write policies for people with chronic or preexisting conditions. Every state has different insurance regulations. We urge you to contact the U.S. State Department of Insurance for information on health or life insurance coverage in the state where you live. Discuss with them the particulars of your situation to find out your options. Can the LFA help me pay for my prescription medications?
If you are having difficulty paying for medications to treat your lupus, there may be assistance available through the Pharmaceutical Researchers and Manufacturers Association (PhRMA). PhRMA sponsors a program that provides prescription medications free to physicians whose patients might not otherwise have access to necessary medications. Consult your physician to determine if you are eligible to access any medications through this program.
Can people with lupus qualify for Social Security Disability?
Lupus affects everyone differently. Not everyone is disabled by lupus. A diagnosis of lupus does not automatically entitle a person to disability benefits. The Social Security Administration recognizes systemic lupus erythematosus as a potentially disabling illness and includes SLE in their listing of impairments.
What do I need to do to apply?
First, ask your doctor if in his/her opinion you are disabled according to the definition used by the Social Security Administration.
Disability definition: the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.
Second, contact your nearest Social Security Administration office and request all information (brochures/pamphlets) and forms to apply for SSDI (Social Security Disability Insurance). They are listed in your phone book. You also can call their toll-free number, 1-800-772-1213.
How do I know if I am eligible for Social Security Disability?
SSDI is an insurance plan supported through payroll deduction (FICA withholding tax) that covers most workers in the U.S. Eligibility is based on prior work. You must be under age 65 and have worked long enough and recently enough to be eligible to apply. The Social Security Administration's web site has a Benefits Screening Tool (BEST) that can help you identify all the benefits you may be eligible for.
What if I am disabled but have not worked long enough or recently enough to be eligible for SSDI? There is another disability program, Supplemental Security Income (SSI), which provides benefits to the needy and disabled who have not worked long enough or recently enough to be eligible for SSDI.
I've heard that it is almost impossible to get disability. Is this true? Applying for and receiving Social Security Disability can be difficult and time consuming; it can take up to a year or longer. You must prove your disability. It requires work on your part to manage your claim and to make sure that your application is COMPLETE. It is crucial that you provide thorough information so the people who review your claim fully understand the impact your lupus has on your ability to work, and your ability to perform daily functions at home. The Social Security Administration (SSA) must justify the disability payments they make. If the forms submitted do not prove to their satisfaction that you are disabled, then the SSA can not justify paying benefits, and you will be denied. On the other hand, a claim that is well documented and supported with complete information likely will provide the justification needed for payment of benefits.
If you are denied, do not take it personally. A denial is only a notice that the information you provided does not prove you are disabled. There is an appeals process. We encourage everyone to follow thorough with the appeal. It is an opportunity for you to submit further information to prove you are disabled.
To assist people in completing their application for disability, the Lupus Foundation of America recommends The Disability Handbook for Social Security Applicants. The Handbook is written for the claimant (disabled adult workers under the age of 65) to use as a guide when applying for Social Security Disability Insurance (SSDI) benefits. It is also useful for disabled adults claiming Supplemental Security Income (SSI). This user-friendly softbound handbook walks you through the disability application process and includes all the worksheets needed to complete an application in a timely manner.
I've just been denied disability benefits by Social Security. What do I do? Don't take it personally. A denial is only a notice that the information you provided so far does not prove you are disabled. There is an appeals process. We encourage everyone to follow through with an appeal. It is an opportunity for you to submit further information to help prove you are disabled. You must appeal within 60 days.
If your first appeal is denied, then you can pursue a second appeal where you will have a hearing before an administrative law judge. We generally recommend that if you progress to this level that you have an attorney familiar with disability law represent you.
How can I find an attorney who specializes in disability law?
The National Organization of Social Security Claimants Representatives (NOSSCR) has a geographic listing of lawyers that specialize in disability cases. They can refer you to an attorney in your area. You may reach them during Eastern Standard Time business hours by calling: 1-800-431-2804
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