FREQUENTLY ASKED QUESTIONS ABOUT LUPUS
1. 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.
What does autoimmune mean?
Literally it means immune activity directed against the self. The immune system fights the body itself (Auto=self). In autoimmune diseases, the immune system makes a mistake and reacts to the body's own tissues.
What is inflammation?
Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus, bacteria) and prevent further injury. Signs of inflammation include; swelling, redness, pain and warmth. If the signs of inflammation are long lasting, as they can be in lupus, then damage to the tissues can occur and normal function is impaired. This is why the treatment of lupus is aimed at reducing the inflammation. Reference: see Facts & Overview, What is Lupus?
What happens in autoimmune diseases like lupus?
The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can think of it like a security system for your body. It contains several different types of cells, some of which function like "security guards" and are constantly on patrol looking for any foreign invaders. When they spot one, they take action, and eliminate the intruder. In lupus, for some reason and we don't know why, the immune system loses its ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence, the "Security Guards" make a mistake, and they mistakenly identify the person's own normal cells as foreign (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site that then attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes. These immune complexes help to set in motion a series of events that result in inflammation at the site. These immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation there.
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.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has developed a strategic plan for reducing health disparities. Lupus is included as an area of research focus. Further information on disparities in lupus and the strategic plan is available at: http://www.niams.nih.gov/an/stratplan/stratplan.htm
What are the symptoms of lupus? Symptoms of lupus vary widely depending on the individual case and the form of lupus present. Most people with lupus do not experience all of these symptoms. The list only serves to alert people to clues that might indicate the presence of lupus in an undiagnosed person.
Achy or swollen joints
Persistent fever over 100 degrees
Prolonged, extreme fatigue
Skin rashes, including a butterfly shaped rash across the cheeks and nose
Pain in the chest on deep breathing
Anemia
Excessive protein in the urine
Sensitivity to sun or ultraviolet light
Hair loss
Abnormal blood clotting problems
Fingers turning white and/or blue in the cold
Seizures
Mouth or nose ulcers lasting longer than two weeks
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2. Are there different kinds of lupus?
There are four forms of lupus including:
Cutaneous lupus erythematosus affects the skin. There are many different types of cutaneous lupus including:
Chronic cutaneous LE (CCLE) which is sometimes called discoid.
Subacute cutaneous LE (SCLE), and
Acute cutaneous LE (ACLE).
See brochure: Skin Disease in Lupus
Systemic lupus erythematosus (SLE) attacks multiple systems in the body which may include: the skin, joints, lungs, blood, blood vessels, heart, kidneys, liver, brain and the nervous system.
See Facts & Overview: What is Lupus?
Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear, within weeks to months, after the drug is discontinued.
See brochure: Drug-Induced Lupus Erythematosus
Neonatal lupus, a fourth type, is a rare condition. It is not the same thing as SLE. See FAQ 39 - Research.
Resource: "Lupus and Pregnancy" by T. Flint Porter, MD, MPH and D. Ware Branch, MD. Lupus News, Vol. 20, No. 5, Winter 2000.
Reference: see Facts & Overview, Types of Lupus
Lupus in Overlap
The majority of people with lupus have lupus alone. Between five and thirty percent of people with lupus report having overlap symptoms characteristic of one or more connective tissue diseases. There are several well-recognized overlaps that may affect people with lupus including: lupus and rheumatoid arthritis (RA), lupus and myositis, lupus and systemic sclerosis (SSc or scleroderma), lupus and Sjogren's syndrome (SS).
Reference: see brochure, Lupus In 'Overlap' With Other Connective Tissue Diseases
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3. Is lupus contagious?
No, not even through sexual contact.
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4. 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, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, 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. However, the majority of people living with lupus today can expect to live a normal lifespan.
People frequently read in the literature that, 80-90% of people with lupus live for more than ten years. Unfortunately, this is often misinterpreted as- people with lupus live for only ten years. Let us clarify this.
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 a period of ten years. At the end of this research period they were able to conclude that 80-90% of the people enrolled were still alive. What this study did not look at is what happened in year 11, 12, 15, 20 and so on. We know there are many people who have been living with lupus for 15, 19, 25, 30 and 40 years. This is not a disease that is universally fatal to all. The majority of people with lupus today 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.
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5. 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.
Are there any special considerations regarding treatment of cancer in people with lupus? Cancer can be treated in many ways; with surgery, radiation and/or chemotherapy. All people with lupus who have surgery for cancer, should be followed closely by their personal physician and/or the rheumatologist to evaluate the activity of their lupus throughout the course. For patients receiving steroid therapy and surgical procedures, their steroid dosage will have to be adjusted during the time just shortly before surgery and then tapered slowly over time after surgery. If a person is scheduled for surgery and they take non-steroidal anti-inflammatory drugs or aspirin, any of which may effect their clotting time, these medications will need to be stopped prior to surgery in order to minimize bleeding.
Chemotherapy usually doesn't present any particular problems and can in turn treat active lupus.
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6. 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.
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7. Lupus anticoagulant
I was just diagnosed with the lupus anticoagulant. Does this mean I have systemic lupus?
The lupus anticoagulant is classified as a type of antiphospholipid antibody that was first detected in people with lupus. It was later learned that many people who do not have lupus, also produce these antibodies. In fact, according to most studies, greater than 50% of the people who have antiphospolipid antibodies, DO NOT have lupus. So, just because a person has the lupus anticoagulant antibodies does not necessarily mean that they have or will develop systemic lupus.
There is a syndrome called the "Primary" Antiphospholipid Syndrome (PAPS). This term is used to describe people who do not have any signs or symptoms of SLE but produce antiphospholipid antibodies such as the lupus anticoagulant and/or anti-cardiolipin antibodies and experience problems with blood clots, miscarriages, or thrombocytopenia (low platelets). People with PAPS do not have lupus.
References: see brochures, Blood Disorders in Lupus, and Antiphospholipid Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies and not have systemic lupus?
Yes. Although these antibodies were first discovered in people who had lupus, it was later learned there are many people who produce these antibodies who do not have systemic lupus.
References: see brochures, Blood Disorders in Lupus, and Antiphospholipid Antibodies and Systemic Lupus Erythematosus
Is it possible to have antiphospholipid antibodies and not have symptoms related to them, i.e. blood clots, miscarriages or low platelets?
Yes. In fact, most people with these antibodies DO NOT and will not have symptoms related to them.
Antiphospholipid Antibody Syndrome Foundation website
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8. Lupus and multiple sclerosis
I was diagnosed with MS 3 years ago and now my doctor thinks I may have lupus. Is there a connection between MS and 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.
Reference: see brochure, Systemic Lupus and the Nervous System
My MRI from 3 years ago showed plaques. Is there anything on the MRI of people with lupus of the nervous system that is diagnostic for CNS lupus?
Diagnosis of CNS lupus is difficult as there is not one specific diagnostic test to detect nervous system involvement in lupus. The abnormalities seen on the MRI scans are not specific for systemic lupus. In other words, they could be due to a number of things. The findings on these specialized tests and sometimes other tests such as a brain wave test (electroencephalogram, EEG) and a spinal tap have to be considered along with clinical and laboratory findings in establishing a diagnosis of CNS lupus. Reference: see brochure, Systemic Lupus and the Nervous System
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9. 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.
References: see brochure, Childhood Lupus and Contact the LFA for articles on childhood lupus.
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LUPUS OF THE SKIN
10. 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.
Reference: see brochure, Skin Disease and Lupus
What do the rashes look like?
There are a variety of ways that cutaneous lupus rashes can appear. The distinctive rash is called the "butterfly rash," which is a rash that extends across the cheeks of the face and the bridge of the nose. It can be flat or raised; it can be bright red or it can be just a mild blushing, light pink coloration to the skin. It appears on the face in a pattern that looks like a butterfly; the wings are beneath both eyes and the body of the butterfly covers the bridge of the nose. Here is one example of what a butterfly rash may look like. (Photo source: Dept. of Dermatology, University of Iowa)
Another classic rash found in cutaneous lupus is the discoid rash. This rash is coin-shaped or oval in shape, like a disk and it is seen on areas of the skin that are exposed to sunlight. Discoid lesions (sores) tend to be red and raised and become scaly. When they heal they can leave behind a scar. These rashes can also result in a change in coloring of the skin, making the area around the lesion either lighter or darker in color. These discoid lesions may appear on the scalp; on the face in a butterfly distribution; or, as mentioned earlier, in areas where the skin receives sun exposure, especially, for example, the V of the neck. Discoid lupus erythematosus (LE) lesions are usually painless and typically do not itch. Here is one example of what a discoid rash may look like. (Photo source: Dermatology Information System, Dermis.net)
Chronic cutaneous lupus may also appear in different forms including:
verrucous (wart-like) discoid LE
lupus tumidus - elevated areas of red skin with no scale or scarring
lupus profundus - discoid skin lesions in conjunction with panniculitis
palmar-plantar erosive discoid LE - discoid lesions on the hands and feet
Another type of lupus skin rash is classified as the subacute cutaneous lesions. These are lesions characterized by redness. They are also coin-shaped, very photosensitive and they get worse when exposed to ultra-violet light. These are lesions that do not leave behind scars, and can appear over large areas of the body. People who have subacute cutaneous lupus erythematosus (SCLE-a subset of cutaneous lupus) may experience systemic symptoms such as:
muscle and joint pain,
fever and
general discomfort.
Serious kidney or nervous system problems are rare.
These are just a few examples of what cutaneous lupus rashes may look like. Because the appearance of skin rashes in lupus can be quite variable, it can be difficult to diagnose just by looking at the lesion, and therefore other tests may be necessary.
Reference: "The Skin In Lupus," by Richard D. Sontheimer, M.D. & Thomas T. Provost, M.D. Lupus News, Volume 18, Number 2, Spring 1998.
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.
Reference: see brochure: Skin Disease in Lupus.
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11. 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.
References: see brochures, Skin Disease in Lupus, and What is Lupus?
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12. I have hair loss due to several scars on my scalp. All are about the size of silver dollars. Is there anything to help this kind of hair loss?
If biopsy results indicate advanced scarring on the scalp, then there is little chance of bringing back significant amounts of hair. If, on the other hand, scarring is not prevalent, then treatment with corticosteroid and/or antimalarial drugs may be successful in getting the hair to return. When the disease is inactive, and scarring is not present hair usually grows back.
Reference: see brochure: Skin Disease in Lupus
Will the drugs used to treat baldness help the hair loss due to lupus?
Suppressing the disease with medication helps hair to re-grow.
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13. Is there anything that can be done to cover the lesions (sores) that show-up on my face?
Yes. There are make-up products available commercially which may be helpful in this situation. Fallene's Total Block® SPF 60 Foundation can be used as a make-up as well as a sun block.
References:
Covermark Cosmetics
157 Veterans Drive, Suite D
Northvale, NJ 07647
1-800-524-1120
www.covermarkusa.com/
Total Block
Fallene, Ltd.
677 West De Kalb Pike
King of Prussia, PA 19406
1-800-332-5536
http://www.totalblock.com/
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14. Can lupus cause either hives or a sensation of burning in the skin?
Lupus may cause hives. Itching can also occur but this is not a common finding. The sensation of itching is due to irritation of nerve fibers in the skin. If the irritation is more intense, it may cause a burning sensation.
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15. 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. Reference: see brochure: Skin Disease in Lupus
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DRUG-INDUCED LUPUS
16. 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 DIL?
There is just a short list of medications for which there is DEFINITE PROOF of an association with drug-induced lupus. The list includes 5 medications.
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 drug-induced Lupus?
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.
Reference: see brochure: Drug-Induced Lupus Erythematosus
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CAUSE
17. 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.
Reference: see Facts & Overview, What is Lupus?
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18. 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.
Reference: see Facts & Overview, What is Lupus?
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. More are listed in the Clinical Trials section. If you are interested in participating or would like information, visit the LFA Research Programs page and click on "Clinical Trials," and/or contact any of the following:
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
Call Carisa Cooney, Kurt Downing, Jessica Lombard, or another Recruiter at 1-888-655-8787 (1-888-OK-LUPUS)
or (405) 271-7479
http://cpu1.omrf.ouhsc.edu/lupus/
National Native American Lupus Project
This project seeks to find members of Tribal Communities willing to participate in the search for the genetic causes of systemic lupus. Researchers are speaking with leaders and members of different tribal groups to exchange information and ideas about the Project, determine how best to conduct the research with specific groups, and establish complementary goals.
If you are Native American and have family members who may have lupus, or know of a Native American family with lupus, please call the NNALP at the Oklahoma Medical Research Foundation toll free at 1-888-655-8787.
African-American Families with Lupus:
Scientists at the Oklahoma Medical Research Foundation are seeking African-American families to participate in studies of systemic lupus erythematosus call the Recruiter at Oklahoma Medical Research Foundation 1-888-65 LUPUS (1-888-655-8787)
Seeking Lupus Families
Families with at least two members who are related by blood and have been diagnosed with lupus should call the Recruiter at the Oklahoma Medical Research Foundation at: 1-888-65 LUPUS (1-888-655-8787)
Families with three or more affected members (siblings, cousins, aunts, uncles, grandparents, etc.) would be exceptionally helpful.
Genetics of SLE - Family Study
Division of Rheumatology
University of Minnesota
14-154 Moos Tower
515 E. Delaware St.
Minneapolis, MN 55455
Tel: 1-800-51-LUPUS (1-800-515-8787)
Dr. Jane E. Salmon
Hospital for Special Surgery
Weill Medical College of Cornell University
New York, NY
Tel: (212) 606-1171
Betty P. Tsao, Ph.D.
Division of Rheumatology
Rehabilitation Center 32-59
1000 Veteran Avenue
UCLA School of Medicine
Los Angeles, CA 90095-1670
Tel:1-800-273-0730
The following investigators are participating in the multi-center Genetics PROFILE study and are interested in people with lupus and their biological parents who live in the geographic areas of Birmingham, Alabama; Baltimore, Maryland; Chicago, Illinois and Houston, Texas.
Dr. Graciela Alarcon
University of Alabama at Birmingham
Birmingham, AL
(205) 934-2799
Dr. Robert Kimberly
University of Alabama at Birmingham
Birmingham, AL
(205) 934-5306
Dr. Michelle Petri
Johns Hopkins University Hospital
Baltimore, MD
(410) 614-1839
Dr. Rosalind Ramsey-Goldman
Northwestern University
Chicago, IL
(312) 503-8197
Dr. John Reveille
University of Texas-Houston
Houston, TX
(713) 500-6900
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19. Can I have my children tested?
Testing isn't advisable in individuals who do not have symptoms.
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20. 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.
Reference: see Facts & Overview, What is 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. 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. A meeting in September of 1998 at Research Triangle Institute (RTI) in Durham, NC organized by NIEHS, looked at autoimmunity and the environment and specifically lupus. A review of the discussion was published in the medical journal, Arthritis and Rheumatism (1998 Oct; 41(10): 1714-24) in an article titled: "Hormonal, Environmental, and Infectious Risk Factors for Developing Systemic Lupus Erythematosus" by Cooper GS, Dooley MA, Treadwell EL, St Clair EW, Parks CG, Gilkeson GS.
The National Institute of Environmental Health Sciences (NIEHS) website: http://www.niehs.nih.gov/
Can something in your diet cause lupus?
We do not believe so.
Resource:
"Eating Healthy When You Have Lupus," by Kristine Napier, MPH, RD. Lupus News, Vol. 15, Number 1, 1995.
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21. Silicone breast implants
I have silicone breast implants and am being tested for lupus. Is there any connection between silicone implants and lupus?
There has been a great deal of interest in this issue and to date there have been numerous well controlled research studies since 1992 that have looked at this question. However, none has shown a clear association between silicone breast implants and the development of lupus disease.
In March 1998, the National Institutes of Health requested that the Institute of Medicine (IOM) of the National Academy of Sciences (NAS) provide an independent, unbiased review of past and ongoing research on the health effects of silicone breast implants. To respond to this request, the IOM established a committee of 12 experts in relevant scientific and clinical areas to assess the scientific information on silicone breast implants and the relationship, if any, to various health conditions.
A one-day scientific workshop was convened on July 22, 1998 in Washington, DC-testimony included epidemiology and observational studies, immunology reports, company data from Mentor Corp. and Dow Corning Corp., and surgery, pathology, and radiology information. A public hearing followed on July 24, to gather information and views from a wide range of lay, advocacy, industry, and public policy groups.
The following year, in June of 1999, the Institute of Medicine's final report concurred with the scientific evidence that had accumulated over the previous 7 years which does not support the notion that silicone breast implants cause lupus. At the present time, as far as we know, there is no scientific evidence to indicate a cause-effect relationship between silicone breast implants and lupus.
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.
Resources:
To receive the most recent information on breast implants contact the
Food and Drug Administration (FDA)
Breast Implant Information Line
1-800-532-4440 or visit their web site at: http://www.fda.gov/cdrh/breastimplants/
The final report made by the Institute of Medicine is available online at:
http://www.nap.edu/books/0309065321/html/
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22. Is there any truth to the claims being circulated on the Internet that lupus is caused by the artificial sweetener, aspartame?
We are aware there is 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.
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DIAGNOSIS
23. Is there a test for systemic lupus?
There is not a single diagnostic test for systemic lupus.
Reference: see brochure, Laboratory Tests Used in the Diagnosis of Lupus
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24. 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. The
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.
How is systemic lupus diagnosed?
Physicians have to gather information from a variety of sources: past medical history, lab tests and current symptoms. They use a list of 11 criteria to help diagnose SLE. A person needs to satisfy at least 4 out of the 11 criteria before the diagnosis can be pinpointed (see list in What is Lupus? brochure). Some criteria, such as a biopsy diagnosis of kidney lupus, can carry more weight.
Of the 11 criteria, 7 relate to symptoms, and 4 have to do with lab tests. The ANA test is used as a screening test for systemic lupus. We know that 95 % of people with SLE have a positive ANA. Therefore, if a person has many symptoms of systemic lupus and their ANA test is negative, that's generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having.
If on the other hand, the ANA comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions including:
Rheumatoid arthritis
Sjogren's (show-grens) syndrome
Scleroderma (sklare-a-derm-a)
Infectious diseases such as:
Mononucleosis
Malaria
Subacute bacterial endocarditis (SBE)
Autoimmune diseases including:
Autoimmune thyroid disease
Autoimmune liver disease
Certain medications can also cause a positive ANA. About 20% of the general population when tested will have a positive ANA and not have any of the above mentioned illnesses. The ANA is only a test and like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease.
So, a positive ANA, by itself, is not diagnostic of any one particular disease and may be present in people who have no illness. Although it is often referred to as "a lupus test," it is not like a pregnancy test where a positive result can mean only one thing. The ANA is only an indicator, which points in several possible directions. A positive ANA satisfies only one criterion. A person would need to satisfy at least 3 additional criteria.
Reference: see brochure, Laboratory Tests Used in the Diagnosis of Lupus
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25. Confusion About Diagnosis
I've seen a list of symptoms of lupus and I have just about every one. The doctor I went to doesn't think I have lupus, but he doesn't seem to know too much about it. How can I be sure I do or do not have lupus?
Lupus is a very difficult disease to diagnose. Physicians use a list of 11 criteria to assist in the diagnosis. The criteria consist of symptoms and lab tests, which tend to be specific to SLE. The list of 11 criteria is not to be confused with lists of common symptoms of systemic lupus, such as: fatigue, fever, weight loss, hair loss, nausea, Raynaud's phenomenon. These symptoms, could be due to numerous illnesses or conditions, and, therefore, are too vague to be included as diagnostic criteria.
If a person has many of the symptoms of systemic lupus, the physician may suspect lupus is developing, and evaluate the patient to see if any criteria are met. If fewer than 4 criteria are satisfied, there is insufficient evidence to diagnose systemic lupus. A rheumatologist or a clinical immunologist may be consulted if you are looking for a specialist who has the expertise to diagnose and treat lupus.
Reference: see Facts & Overview, What is Lupus?
I am afraid I might have lupus and my doctor is going to miss something and end up diagnosing me with lupus too late. If I have it, I want to be diagnosed as early as possible. How can I make sure I am diagnosed earlier rather than later?
Because lupus tends to develop slowly and evolve gradually over time, awaiting a diagnosis can be like waiting for a Polaroid picture to develop. If you are seen by a doctor at a point in time when only one or two criteria are satisfied, it is like looking at a picture that is only one-quarter or half-way developed. No one looking at that picture can accurately identify what it is. Nor can they predict if it will develop at all or what it will develop into, or how long it will be before it is developed to the point where it's identifiable. Just as there is no good way to speed-up the development of a Polaroid, there is no way to hurry-up the diagnosis of lupus.
The length of time it takes before lupus can be diagnosed is highly variable; it may take weeks, months or years; three years is not an uncommon length of time for many people to have symptoms before being diagnosed. In some cases, it can take as long as 10 years before enough evidence has accumulated to indicate that it is lupus. However, generally a doctor has a pretty good idea, though s/he may not be certain, that a person does or does not have SLE. The important thing is to learn the signs and symptoms of lupus and if you develop something new, let your doctor know so s/he can determine if you have yet satisfied enough criteria to be diagnosed.
My doctor suspects I have lupus, but hasn't diagnosed me with it yet. I have a lot of joint pain in my hands and knees. Can anything be prescribed to give me some relief, or do I have to wait until I have a definite diagnosis before they can treat me?
Sometimes, a trial of lupus medications is helpful, so discuss this with your doctor.
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.
I was told my ANA was positive, but I don't have lupus. My Doctor thinks I have a connective tissue disease. What does this 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.
References:
Brochures: Lupus in Overlap with other Connective Tissue Diseases, Lupus: Basics for Better Living
Articles: "My ANA is Positive...What Does That Mean?"
I was told my ANA was negative, and I don't have lupus. Is it possible to have lupus with a negative ANA?
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 positive and I have a lot of pain, 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.
Resources:
Fibromyalgia Network,
P.O. Box 31750
Tucson, AZ 85751-1750,
1-800-853-2929 or (520) 290-5508
http://www.fmnetnews.com/
The National Library of Medicine's MEDLINE Plus: Health Information-Fibromyalgia
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LIVING WITH LUPUS
26. 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.
Reference: "Eating Healty When You Have Lupus," by Kristine Napier, MPH, RD. Lupus News, Vol 15, Number 1, 1995.
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. Reference: see brochure, Lupus: Basics for Better Living
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.
Resources:
National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Patient Information Sheet #3, Exercise and Lupus"
"Questions and Answers about Arthritis and Exercise"
American College of Rheumatology:
"A Fact Sheet on Exercise and Arthritis"
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.
Resource: National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) "Preventing Fatigue Due to Lupus"
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.
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27. Flares
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. So we have no way of forecasting how long a flare will last or how long a remission will last. Sometimes changes in symptoms or lab tests predict future changes.
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.
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28. What can I expect in the future?
Will I be able to have a family?
Unless there is moderate to severe organ involvement or if a person must take immunosuppressive/immunomodulating medications that would place the mother at risk, there is no absolute reason why a person 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, today 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.
Reference: see brochure, Pregnancy and Lupus
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.
Reference: see Facts & Overview, What is Lupus?
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.
Reference: see brochure, Joint and Muscle Pain in Lupus
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29. Is there anything I can do to alleviate the pain when the pills don't seem to work and I can't get in to see the doctor for a few days?
Some people find relief from heat, some people find relief from cold. Others find that if they can find a distraction to decrease their awareness of pain, this is beneficial.
Resources:
see brochure, LUPUS: Basics for Better Living; "Control Your Pain: 144 Sure-Fire Strategies for Reducing the Pain of Lupus," by Robert H. Phillips, Ph.D. Available through the LFA Store.
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30. 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.
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31. 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.
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32. 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.
Reference: Systemic Lupus and the Nervous System
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TREATMENT
33. Is there a cure for lupus?
At the present time there is not a cure for lupus, but there certainly is effective treatment.
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34. 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.
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).
The majority of people who have lupus are treated with the first three families of medications, the nonsteroidals, corticosteroids and the anti-malarial drugs. These may be used either alone or in combination. 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.
References: see Brochures:
Medications Used in the Treatment of Lupus
Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)
Steroids in the Treatment of Lupus
Anti-Malarials in the Treatment of Lupus
Immune Suppressants and Related Drugs Used for Lupus.
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
Eat 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.
Support groups and commercial weight loss programs can assist in weight control efforts.
Reference: "Eating Healthy When You Have Lupus," by Kristine Napier, MPH, RD. Lupus News, Vol 15, Number 1, 1995.
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.
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35. 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. Certainly the health care institutions with established reputations fit this description.
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ALTERNATIVE MEDICINE
36. 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.
The Harvard Health Online, January 2001 issue offers an article that includes a discussion of the current research on massage at: Alternative Medicine: What works.Maybe
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37. 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.
Resources: "Can Acupuncture Help Lupus?" by Clayton E. Spivey, Licensed Acupuncturist. Lupus News, Vol. 16, Number 3, 1996.
NIH National Center for Complementary and Alternative Medicine:
Acupuncture Information and Resources Consensus Report on Acupuncture
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38. 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. In addition the ACR does not endorse nor warrant any commercial product or service. There is a wealth of information and data available about approved medications and products which help guide physicians in making recommendations to their patients. Remedies that have not undergone the scrutiny of scientific investigation, lack the crucial information and data necessary to enable physicians to make sound recommendations regarding substances.
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.
The following organizations may have information about alternative therapies or products.
National Institutes of Health
National Center for Complementary and Alternative Medicine
Phone: 888-644-6226
http://nccam.nih.gov/
Food and Drug Administration
Office of Dietary Supplements
Phone: 301-827-6242
http://www.fda.gov
United States Pharmacopeia
12601 Twinbrook Parkway
Rockville, MD 20852
Phone: 301-881-0666
http://www.usp.org/
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RESEARCH
39. Lupus Research
Is any research being done on lupus?
Yes, 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 PubMed web site: http://www.ncbi.nlm.nih.gov/PubMed/
Currently, we are aware of many ongoing clinical studies involving people with lupus and their families. A list of studies is available in the Clinical Trials section of this site.
Clinical research can be divided into two broad areas: testing of new therapies and research to expand our understanding of different aspects of lupus. There are several genetic linkage studies in lupus (see question 18) that will help to identify genes that determine susceptibility to the disease. We are also aware of multi-centered clinical trials that are evaluating DHEA, a male hormone, to see if it can improve clinical outcome and disease symptoms in women and men with systemic lupus. There are also clinical trials being conducted using Toleragens,™ which are molecules designed to tolerize or shut-off B cells (antibody producing white blood cells) that produce Anti-DNA antibodies. Anti-DNA antibodies are felt to be responsible for causing many of the symptoms of SLE, especially kidney disease. It is hoped that suppression of these antibodies will result in improvement of disease activity and decrease the need for immunosuppressive therapies. These are just a few of the many areas of lupus research under investigation. For more information visit the LFA Research, Programs and LFA Funded Projects areas of this site.
Where is lupus being researched?
Lupus research is conducted by both public and private organizations, companies, universities and colleges, as well as the federal government; which includes the National Institutes of Health (NIH), the Department of Veterans Affairs (VA), the Centers for Disease Control (CDC), the Food & Drug Administration (FDA), and the Military. The NIH contains the National Institute for Arthritis, Musculoskeletal and Skin diseases. This is commonly referred to as NIAMS, and it is here where much of the federally funded research related to lupus takes place.
Where does the NIAMS lupus research take place?
The NIAMS is within the National Institutes of Health in Bethesda, Maryland and research occurs there, as well as at other major medical centers around the country.
In April 1994, NIAMS announced the establishment of the first two Specialized Centers of Research (SCORs) in systemic lupus erythematosus; the Hospital for Special Surgery, Cornell Medical Center in New York City, and the University of North Carolina, in Chapel Hill. A SCOR is envisioned as a national resource associated with one or more major medical complexes and dedicated to working with the NIAMS in furthering the research effort to translate basic research to clinical application. Federally funded research at these specialized centers permits basic and clinical researchers to work together to focus on one disease.
To learn more about NIAMS initiatives in lupus research see their Press Releases:
In addition to the NIAMS, there are several other institutes involved in lupus research within the National Institutes of Health (NIH), including the NIDDK, NIAID and NCCR.
What do we now know as a result of NIAMS supported research? A synopsis of progress in lupus research is available in the booklet: Progress and Promise - NIAMS 15th Anniversary Booklet
Are there any studies on the use of estrogen in lupus?
In January 1996, NIAMS announced the beginning of the first clinical trial on the safety of estrogen in lupus erythematosus. The clinical trial, known as SELENA, (Safety of Estrogen in Lupus Erythematosus National Assessment) is being funded by NIAMS, the NIH Office of Research on Women's Health and the NIH Office of Research on Minority Health. Several major research centers in twelve states are collaborating in this randomized double-blind, placebo-controlled trial to determine:
1. the effects of oral contraceptives on disease activity and severity in SLE. This will show whether it is safe for women with SLE to use the Pill.
2. whether the hormone estrogen can be used by postmenopausal women with Systemic Lupus Erythematosus (SLE). The study will look at the effects of estrogen replacement therapy on the activity and severity of SLE.
A list of study sites, contact information, inclusion and exclusion criteria is available at Clinical Trials.gov. Use the search term SELENA.
NIAMS Registries for Lupus and Lupus Related Conditions
Lupus Registry and Repository
In early 1996, the NIAMS established the Lupus Registry and Repository to study people with lupus, and their families in order to identify genes that determine susceptibility to the disease. The high prevalence of lupus among relatives of lupus patients suggests a genetic component for the disease. However, genetic studies of lupus to date have been incomplete. The Lupus Registry and Repository is located at the Oklahoma Medical Research Foundation in Oklahoma City, OK.
Dr. John Harley directs this extensive project. He and his associates collect and update clinical, demographic and laboratory data on all patients with lupus and their families for the Lupus Registry. Blood, cells, and DNA from these individuals are stored in the Lupus Repository for genetic testing.
They are seeking lupus patients who have two or more family members who have been diagnosed with the disease. Families who qualify for the study receive a blood sample collection kit, a consent form and a questionnaire. A blood sample is collected and completed materials are sent to Dr. Harley and his associates for evaluation. Patients or physicians interested in participating should contact:
Carisa Cooney, Kurt Downing, Jessica Lombard or a Recruiter
Oklahoma Medical Research Foundation
Lupus Multiplex Registry & Repository
825 NE 13th Street, MS #5
Oklahoma City, OK 73104
1-888-655-8787 (1-888-OK-LUPUS)
or (405) 271-7479
http://omrf.ouhsc.edu/lupus
Neonatal Lupus Registry
Dr. Jill Buyon is the director of the NIAMS/HJD Neonatal Lupus Registry. The Registry includes identifying and diagnostic information on mothers and their affected infants. The purpose of the Registry is to facilitate access to patients by investigators conducting basic, clinical or epidemiological research.
Please contact:
Jill P. Buyon, M.D., Director
or Peg Katholi, Coordinator
NIAMS/HJD Neonatal Lupus Registry
Hospital for Joint Diseases
301 East 17th Street, Room 1606
New York, NY 10003
Tel: (212) 598-6514
Fax: (212) 598-6449
E-mail : Peg.Katholi@med.nyu.edu
Antiphospholipid Syndrome Registry
Robert A.S. Roubey, M.D. at the University of North Carolina, Chapel Hill directs the APS registry scientists who will collect clinical, demographic and laboratory information on patients with clinical signs of APS as well as people who have antibodies but have not yet developed any clinical signs. Data will be made available to researchers and medical practitioners concerned with diagnosis and treatment.
Please contact:
Robert A. S. Roubey, M.D.
University of North Carolina,
Chapel Hill, NC
Tel: 919-966-0572
Email: apscore@med.unc.edu
Fibromyalgia Family Study Registry
Dr. Jane Olson will lead this study of patients in families with at least two FMS-affected individuals. Families are eligible for participation in this study if at least two closely related family members have Fibromyalgia Syndrome (FMS) and if at least one of these has no other major rheumatologic disease. Clinical, demographic, and laboratory data on FMS will be collected. In addition, DNA will be collected so that genetic linkage studies may be performed.
Please contact:
Dr. Jane Olson
Case Western Reserve University
Cleveland, OH
Tel: 216-778-4589
Email: ffs@darwin.cwru.edu
Further information on these and other NIAMS Registries is available at:
http://www.niams.nih.gov/hi/registry/registry.htm
Further information is available from NIAMS at:
http://www.niams.nih.gov/
Public health information is available from the NIAMS Information Clearinghouse by calling:
1-877-22-NIAMS and at: http://www.niams.nih.gov/hi/index.htm
NIAMS budget information is available at:
http://www.niams.nih.gov/an/budget/index.htm
NIH Office of Financial Management web site:
http://www4.od.nih.gov/ofm/
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 or 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. For further information, visit: LFA Funded Projects.
How do I find out more about the LFA's Research Grant Program?
Each year the LFA distributes requests for proposals (RFP) to teaching centers, hospitals, educational institutions and researchers across the country. A primary focus of the organization is to encourage research related to the causes, treatments, prevention, and cure of lupus and to directly sponsor "seed" research monies to test new approaches and develop experimental prototypes that may be presented for larger-scale funding through public or other sources.
Grants are awarded for up to two years to junior investigators (defined as academic rank of Assistant Professor or below) to support biomedical research related to finding the cause(s) and/or cure for lupus erythematosus.
Researchers interested in the LFA grants program can Contact the LFA National Office and ask to be placed on the RFP mailing list. Information and applications are downloadable from the LFA Research section of this site. The deadline for applications is April 1st of each year.
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.
Through research, we establish new knowledge and a better understanding of how the immune system functions. Our knowledge is incomplete, but we don't know how much more we need before we will fully understand what goes wrong in lupus and why. So, we don't know how close we are to a cure because we don't know really where the finish line is. There is a great deal of interest within the scientific community in mastering all the complexities of the immune system. Because of this, there is hope that we will one day understand just precisely what goes wrong with lupus and why. This will be a major step in the process of finding the cure.
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WORK - INSURANCE - DISABILITY
40. 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.
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41. 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 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. Contact information for U.S. State Departments of Insurance is available at: http://www.naic.org/state_contacts/sid_websites.htm
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42. Financial Assistance
Can the Lupus Foundation of America (LFA) provide financial assistance to individuals in need?
Unfortunately, the Foundation is not set up to provide individuals with financial assistance. We may, however, be able to refer you to other agencies or organizations that can be of help. We encourage you to contact your nearest LFA Chapter as they may be able to assist you in locating local resources. You also can contact your county Department of Social Services to find out about available services in your area.
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. The Directory of Prescription Drug Patient Assistance Programs lists member companies of PhRMA that participate, medications covered, and eligibility criteria. If you meet the criteria, the pharmaceutical company will send the medication to your doctor, who will dispense it to you. Further information is available at the PhRMA web page: The Directory of Prescription Drug Patient Assistance Programs Consult your physician to determine if you are eligible to access any medications through this program.
Does the Lupus Foundation of America have a scholarship program to help students with lupus pay for college/training?
The LFA does not have a scholarship or any other form of financial aid available to students. Financial aid information is available at the following web sites:
U.S. Department of Education- Student Financial Assistance
FinAid! The SmartStudent Guide to Financial Aid
FinAid: Information on Financial Aid for Disabled Students
FastWeb: Scholarship and College Searches
The LFA DOES have the Gina Finzi Memorial Student Summer Fellowships for Research Related to Lupus Erythematosus. This program is designed to encourage young science majors (undergraduates, graduate and medical students) to participate in lupus related research under the supervision of an established investigator. Preference is given to applicants who have already earned a college degree. The application deadline is February 1st of each year and awards are announced each April. For further information and application materials, see the LFA Research section of this site.
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43. 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, between 7 a.m. and 7 p.m. any business day.
Information is also available online at:
Social Security Disability Program: Disability Information
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 Benefit Eligibility 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, and other illnesses, have 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.
Reference: Disability Handbook for Social Security Applicants, Fifth Edition, by Douglas M. Smith (2000).
To assist people in completing their application for disability, the Lupus Foundation of America has available the Disability Handbook for Social Security Applicants. Written by attorney Douglas Smith, this recently revised and expanded Disability Handbook shows how to prove to the Social Security Administration that you qualify for benefits. The Disability Handbook for Social Security Applicants 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. (137 pp., revised and expanded in 2000.)
The handbook is available through the LFA Store, and may be available through your nearest Chapter at a discount.
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.
Reference: Disability Handbook for Social Security Applicants, Fifth Edition, by Douglas M. Smith (2000).
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 business hours by calling: 1-800-431-2804 http://www.nosscr.org/
Reference: Disability Handbook for Social Security Applicants, Fifth Edition, by Douglas M. Smith (2000).
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December 3, 2004
© 2005 Lupus Foundation of America, Inc.