GENERAL QUESTIONS ABOUT LUPUS........

Q: Can a person with lupus donate blood?

A: To begin with, a person with lupus should always discuss the issue of donating blood with their doctor. You should not donate blood if you are too anemic (a low red blood cell count). Each blood donation service will have their own set of guidelines for eligibility, so be sure to know the guidelines of the donation service you intend to use. According to the American Red Cross, while a diagnosis of lupus was at one time a disqualifier for the donation of blood, this is not longer the case. The Red Cross will allow those with lupus to donate even while taking such medications as Plaquenil and/or Corticosteroids. In contrast to the Red Cross, the National Institutes of Health (NIH) will not accept blood donations from those with lupus. Their thought is that without a full understanding of the causes of disease like lupus and the role of antibodies, they can not ensure that there is absolutely no risk of transmission of harmful elements to the other patients.

In fact, since blood components are separated, the only components in a patient's blood that might be problematic are plasma and/or antibodies. Red blood cells or platelets should be safe to donate as long as the donor has sufficient amounts for themselves, and these are the parts of the blood most often needed by patients who receive blood.

So do your homework on the guidelines of the donation service you have chosen and discuss with your doctor whether it is OK for you to be a blood donor. The LFA commends you for wanting to help.

Q: I was diagnosed with Multiple Sclerosis (MS) 3 years ago, and now my doctor thinks I may have lupus. Is there a connection between MS and lupus?

A: 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.

Q: I have SLE and have been considering light therapy for Seasonal Affective Disorder (SAD). I was wondering if the lights used for such therapy can trigger flare-ups? (due to UV exposure or any other concerns)

A: The majority of lupus patients are sensitive to ultraviolet light. This sensitivity is typically from ultraviolet B (UV-B) but can also be from ultra-violet A (UV-A) in some individuals. The sun and fluorescent lights are constantly exposing us to ultraviolet light. Therefore, it is strongly recommended to lupus patients to avoid ultraviolet light exposure through sun protective clothing, sunscreen, sun block and avoidance. Therefore, when asked by a lupus patient who is considering light therapy for seasonal affective disorder (SAD), we have to ask if the benefit outweighs the risk. There is a potential risk of a lupus flare for the patient using light therapy. However, is the patient demonstrates no photosensitivity and the SAD is so severe that various therapies are not working, it could be considered. I would strongly suggest that a lupus patient considering light therapy for SAD talk with their rheumatologist to weigh the potential risk and benefit.

Photosensitivity -- Photosensitivity refers to the development of a rash after exposure to UV-B radiation found in sunlight or fluorescent light. It occurs in 60 to 100 percent of patients with SLE. Some patients are also sensitive to UV-A (as from a photocopier), and may even be sensitive to the visible light spectrum. Glass protects individuals sensitive to UV-B, but only partially protects those sensitive to UV-A. Blonde, blue eyed, fair skinned individuals are much more photosensitive than brunettes or individuals with pigmented skin; the incidence is also greater in those with anti-Ro antibodies.

More than one-half of lupus patients are sensitive to light. This sensitivity is typically to ultra-violet B (UV-B) but can include ultra-violet A (UV-A) in some individuals.

Q: I have lupus (obviously) and Factor V. Leiden. I know that they are not related, but wonder if one would have an effect on the other.

A: There is absolutely no relationship between lupus and Factor V Leiden. Factor V Leiden is an inherited disorder that can cause risk for blood clots. Some lupus patients have other reasons to have increased risk for blood clots. Some lupus patients also have Factor V Leiden, but that is just circumstance that put both of those risks in one person.

Q: I'm concerned about new reports encouraging people to change all incandescent light bulbs to fluorescent bulbs. Don't fluorescent lights produce ultraviolet rays that are harmful for people with lupus?

A: The issue of lupus photosensitivity is a complex one and one of the least scientifically studied clinical aspects of cutaneous and systemic lupus. It is my opinion that if a standard fluorescent tube lighting source is shielded by a standard acrylic plastic diffuser, there’s virtually not significant risk for people with systemic lupus. These plastic diffusers are available form a variety of companies. However, if a person with lupus I exposed to unshielded fluorescent lighting at close distances for prolonged periods of time, then the cumulative exposure to UVB and UVA could be a problem. You may contact Lupus Now Editor Jenny Allan at allan@lupus.org for a copy of my 1993 publication (a letter to the Editor to the journal Arthritis and Rheumatism) that addresses the issue of ultraviolet light leakage from fluorescent lighting tubes as a risk for lupus photosensitivity.

Q: In 1997, I was diagnosed with lupus. In the beginning my doctor sometimes said "lupus" and sometimes "connective tissue disease." Why?

A: Lupus is one of the several illnesses that have been considered connective tissue diseases. This is an old-fashioned term, but it is still used in confusing cases when the diagnosis is uncertain. This frequently happens to people early in the course of lupus.

Q: How does diabetes affect my lupus and vice versa? What can I do when either get out of balance?

A: Diabetes and lupus are both chronic diseases that can increase the risk for kidney damage, high blood pressure, and heart disease. Keeping lupus under control and blood glucose (sugar) under control are paramount. Modifying al other risk factors for heart disease and avoiding medications that are toxic to the kidneys or rise blod pressure might be of some help.

Q: Is there a connection between chronic fatigue syndrome and lupus fatigue?

A: It is generally thought that chronic fatigue syndrome (CFS) and lupus fatigue are two distinct entities. In 1994, an international panel of CFS research experts convened to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. Chronic fatigue syndrome is defined as (1) having severe chronic fatigue of six months or longer with other known medical conditions excluded by clinical diagnosis; and (2) concurrently having four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and pain in muscle after exercising that last more than 24 hours. Lupus fatigue does not have a formal definition. Note that CFS appears in the absence of other medical conditions. Therefore, fatigue can be seen in lupus, but by definition is not related to CFS.

Q: Can lupus cause thyroid problems? If so, what affect does removal of the thyroid have on the body?

A: Autoimmune thyroid problems are relatively common in lupus, but lupus is probably not causing the thyroid disorders. Some genes contributing to lupus also predispose a person to thyroid problems. Also, a protein called "interferon alpha" is increased in the blood of lupus patients, and contributes to both lupus and autoimmune thyroid disease. It may be that specific genes, together with interferon alpha, contribute to the development of both lupus and thyroid diseases independently, rather than lupus causing the thyroid problem. Removing the thyroid will cause the usual problems associated with low thyroid hormone, has not reported to affect lupus.

Q: Will eating nightshade vegetables increase my lupus flares or joint pain? It seems that every place I read about this has a different opinion about this.

A: The nightshade vegetables include white potatoes, tomatoes, peppers (sweet and hot), and eggplant. There are others, but they are not foods that are typically consumed in the U.S. While there is anecdotal evidence that some of these foods can be related to inflammation, there is no solid scientific evidence to support this concept. My advice would be for people to keep track of when they eat these foods, and to look for a pattern between consumption and a flare. They would want to observe a link between a particular food and a flare on multiple occasions -- not just a few times. If there does seem to be a connection, then by all means, a person could avoid one/all of the nightshade vegetables without creating any nutrient deficiencies. Peppers, for example, are high in vitamin C, but so are plenty of other foods (i.e. citrus), so limiting peppers in your diet isn't going to cause any problems. Bottom line -- there isn't any good scientific evidence linking nightshade vegetables to inflammation/flares, but if people believe there is an association for them, then it isn't going to hurt them to omit the offending food from their diet.

Q: Can you tell me the risk a woman with lupus has with having sex with a man with herpes simplex ... genital and/or oral?

A: Lupus itself and the immunosuppressive medicines used to treat lupus increase the chance of infections, including viral infections such as herpes. Evidence suggests that lupus patients have a particular problem with herpetic viral infections. Several things including sunlight exposure and stress can also set off a herpetic viral reactivation.

Q: I've read a little about polycythemia -- does a lupus patient develop this at times?

A: No, it is not common. It's extremely rare. Research on the occurrence of this finds only two case reports of polycythemia in lupus patients. So there is no connection between the two. Lupus is an autoimmune disorder and polycythemia is a condition in which there is increased blood volume and high hemoglobin levels (too many red cells).

There are two kinds of polycythemia: primary (inherited) and secondary (usually acquired from a medical condition that causes low oxygen in the blood such as lung conditions, smoking, etc.) Mild polycythemia is common in people who smoke.

Q: I would like to know; what is lupus serositis?

A: Serositis is the inflammation of the serous membranes (sacs) that surround organs. Serositis is one of the symptoms of lupus listed in the criteria of the American College of Rheumatology. This symptom is known to affect up to 45 percent of people with lupus. Examples of serositis that can be affected by lupus are pleurisy an inflammation of the membrane that surrounds both lungs and pericarditis an inflammation of the sac (pericardium) that surrounds the heart.

Q: Can lupus affect your vision?

A: According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, changes in vision can be a result of lupus or because of the corticosteroids and antimalarials used to treat lupus. Problems can include inflammation of the eye, glaucoma, cataracts, general changes in vision, and blocked tear ducts. On very rare occasions, blindness can result. Warning signs include:

Development of a rash over the eyelids
Mucus discharge from the eye
Blurred vision
Sensitivity to light
Headaches
A sore, red eye
Lack of tears, and eyes that hurt and are dry
Episodes of flashing lights and partial blindness
Q: Can a woman with SLE & taking Medro every day get a tattoo?

A: There are no specific problems that have been associated with tattoos in lupus patients. Keep in mind the small risk of infection with hepatitis B and C. Occasionally lupus patients have been known to have a reaction to the tattoo dye but this is very rare. Remember, if you are on immunosuppressive medication, this may increase the chances of infection and slow healing of the tattoo area. As with other procedures, it is best done when you are in remission or a welled controlled mild disease state. Consult with your physician prior to getting your tattoo.

Q: Are there any restrictions on physical activity for lupus patients? Are there any exercises that have been particularly beneficial for those diagnosed with lupus?

A: 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. Light weights are also good along with resistance. But keep in mind that they will want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help them function better and improve fatigue and your sense of well being. The Lupus Foundation of America in Piedmont, North Carolina has put together a great DVD called The Right Moves for Lupus. It costs about $15 and can be purchased through their website.

Q: I'm going to a three day concert this summer in TN. How can I protect myself from the sun when shade really isn't an option?

A: You are correct that you need to protect yourself from excessive exposure to the sun. First, you need to get a wide brimmed hat (I know it is not the best look, but neither is the skin rash). If possible, try to have an umbrella to shade you. You need to use sunscreen on any and all exposed areas and reapply as needed. There is also a company called Coolibar. They offer a unique range of sun protective clothing, sun hats, sun protective swimwear and multi-spectrum sunscreens. You may want to check out their website. Check with your physician before the concert to make sure that everything is going well with you ... and for any last minute advice.

Q: I need some nutrition advice, as well as advice on vitamins, foods, etc.

A: At this time, there is no specific lupus diet. Most people with lupus do not require special diets. It is important to maintain a nutritionally sound and well balanced diet. A proper diet ensures that we consume all of the necessary vitamins, minerals, and supplements. However, if your doctor feels it would be helpful for you, it may be suggested that you try a reducing diet, salt free diet, or low protein diet or combination of the three. If you have kidney involvement, a salt free low protein diet may be helpful in minimizing water retention.

A healthy intake of vitamins and minerals is important for everybody. If you eat a good variety of nutritious foods to include fresh fruits and vegetables, fiber rich cereals and grains, and lean cuts of meat then you are probably getting all of the vitamins and minerals you need to be healthy. There's little scientific evidence to prove that taking in extra amount of micronutrients such as through supplementation, can help improve your lupus.

Q: I have been told that lupus can be hereditary. I have many people in my family on my mother's side who have lupus. But now I am being told that it can't be hereditary. Can you clear this up for me?

A: Lupus does have a genetic predisposition. This means that if you have a first degree relative in your family who has lupus, you are more likely to develop lupus than someone who does not have a family member with lupus. Even with a family member with lupus, however, your chances of developing lupus are less than 5 percent. Lupus is a multigenic disease, which means it requires a number of genetic factors for someone to develop lupus. This is in contrast to sickle cell anemia or cystic fibrosis which are one gene diseases. So, lupus is hereditary in the sense that it runs in families. The risk of developing lupus, even with a family member having the disease, is small. Routine laboratory screening of family members is not currently recommended. If, however, there are symptoms of arthritis, skin rash etc, then they should see their doctor.

Q: Do you know where I can find help on learning about systemic lupus and cirrhosis of the liver? My daughter is 28 years old, and has both. Her physicians say that her cirrhosis was caused by lupus.

A: There is no association between SLE and cirrhosis of the liver. Patients with SLE often get liver blood tests that are somewhat abnormal; a liver biopsy in some of them shows "fatty livers." There is an entity called Lupod hepatitis, which is actually an autoimmune disease of the liver with antinuclear antibodies.  Some skin and joint problems -- but not SLE -- require a liver biopsy to diagnose.  People with lupus, like any other medical condition, can develop cirrhosis from other causes, typically viral hepatitis.

Q: I live in a high humidity state and the summers are hard on me. Last summer I spent a week at Bethany Beach in Delaware. I felt great. I used sun screen, beach umbrella, and a long sleeve linen shirt. I never felt so good. Could this be because the humidity is low there? We were there in the middle of July!

A: I prefer my lupus patients to not spend much time in the sun. However, it appears that you tolerate it well. This issue of humidity is not studied and if you do well, it must be good for you.

Q: What happens if one decides not to treat lupus.

A: Because lupus is such a heterogeneous disease, it is difficult to predict or generalize about what would happen if it were left untreated. For the individual patient, a critical question would be what disease manifestations they have. This is because the management and treatment of lupus should be guided by the degree and severity of clinical manifestations. Thus, up to 50% of lupus patients may have non-life threatening features, such as fatigue, joint pain, and rash. Non-steroidal anti-inflammatories (e.g. ibuprofen) and anti-malarials (plaquenil) are frequently used for symptomatic relief in this case. Because there is a risk of disease flare with more severe organ involvement (kidney or lung/heart inflammation, for example), lupus patients should have regular evaluations to make sure life-threatening involvement is not developing. Many lupus doctors prescribe antimalarials even in the setting of mild disease because there is good evidence they may decrease the frequency and severity of flares and have low toxicity.

For patients with severe organ involvement (like kidney inflammation) treatment is very important. Before medications (like steroids and other immunosuppressives) were available to treat lupus, overall 5 year survival rates were less than 50%. With expanded therapeutic options, 5 year survival rates are now over 95%.

Q: I just returned from a dental exam. I had six cavities, which is unusual for me. Could my dental situation and my lupus be connected?

A: Dental decay can have a number of causes, such as frequent intake of sweets or carbohydrates, poor cleaning techniques, dry mouth, and/or the bad luck to be one of those individuals who seem to grow lots of bacteria that cause decay.

I am not aware of a direct connection between tooth decay and lupus. However, dry mouth -- perhaps caused by the medications you may be taking for lupus or by the condition called Sjögren’s syndrome -- can create a terrible problem with decay. However, with a compliant patient, decay can almost always be conquered. It may take daily fluoride applications, dietary changes, prescription mouthwash and use of gums or mints containing significant amounts of xylitol, and of course meticulous daily use of a toothbrush and dental floss.

Editor’s Note: Xylitol, which occurs naturally in many fruits and vegetables, is gaining increasing acceptance as an alternative sweetener because of its role in reducing the development of dental caries (cavities).


Q. My wife’s mother has lupus. We would like to understand the disease and find out if it can be hereditary. Are there any specific health tests we should consider? Is it possible to prevent lupus -- in my wife or our children?

A. Lupus is a complex disease that likely is caused by several interacting features. For example, we know that inherited genes, environmental exposures (such as certain medications, severe exposure to ultraviolet rays, perhaps certain viral exposures at key times) and female hormones are all likely contribute to the development of systemic lupus. Genetic predisposition is only one factor.

Indeed, the majority of SLE cases that develop are sporadic (that is, no known relative has SLE). When looking at identical twins, in only 50 percent of cases do both siblings develop lupus. Normally we tell young women with lupus that the risk of their child developing the disease is only nominal, only 1 to 5 percent.

Currently, no screening or genetic tests are available. We encourage family members to lead active, healthy lives. Sunscreen protection is always a good idea. If symptoms develop (joint swelling and pain, unexplained rashes, atypical chest pain), we encourage family members to seek evaluation from their regular doctors, and to be sure to mention the family history of SLE.

Q. Is the use of tanning beds okay for people with lupus?

A. In my opinion, no. The bulbs in tanning beds produce ultraviolet light rays. It is the ultraviolet light rays that cause the skin to tan. The majority of people with lupus tend to be unusually sensitive to ultraviolet light. That is to say, exposure to excessive ultraviolet light, especially the UVB sunburning rays, can cause lupus skin lesions to appear, or make existing lupus skin lesions worse. Ultraviolet light can also activate the internal, or systemic, manifestations of lupus in some people.

There have been many examples of lupus skin disease patients who were thought to have psoriasis instead, and were then treated for psoriasis in medical phototherapy cabinets that are similar to tanning beds. A number of these people almost died from severe activation of their systemic lupus following such mistaken treatment.

Some research suggests that very long ultraviolet light wavelengths, in what is called the "UVA-1" range, can improve certain forms of lupus skin disease and mild forms of systemic lupus. This research has been somewhat controversial, because other research has found that higher doses of the same UVA-1 wavelengths are capable of aggravating the systemic manifestations of lupus. Therefore, the biological effects that people with lupus might experience (i.e. getting worse or better) are likely to be critically dependent upon the amount of the different wavelengths of ultraviolet light energy that their skin receives.

In a routine commercial tanning bed setting, it would be quite difficult for people with lupus to know how much of the various UV wavelengths they are receiving. Thus, for people with lupus, visiting a tanning salon may be too risky.

Q: Does lupus always eventually go into remission?

A: The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In the latter situation, quiescence is usually achieved with medication.

Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years ago, fewer than 6 percent of patients achieved that goal.

Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it that way.

Q: Is there anything I can add to my diet that could lower the inflammation that lupus causes?

A: There has been considerable interest in the influence of dietary factors on many different autoimmune diseases, including lupus. Much of this interest has focused on omega-3 fatty acids because of their potential effects on inflammation. Animal fats are a source of omega-6 fatty acids. Fish, flaxseed and canola oils, and green, leafy vegetables are sources of omega-3 fatty acids. The relative amount of omega-6 and omega-3 fatty acids in the diet affects the types of prostaglandins and other compounds the body produces that influence the inflammatory response. The omega-3 fatty acids in particular result in the production of more anti-inflammatory compounds.

There has been one large study of dietary factors in relation to lupus disease activity. In this study of 216 lupus patients in Japan conducted by Yuko Minami, M.D., there was no association found between intake of total fat, type of fat, or omega-3 fatty acids and subsequent disease activity over a four-year period. However, higher intakes of antioxidants (for example, vitamins C and E) were associated with decreased disease activity.

Thus, although currently available studies suggest that diets high in antioxidants -- and possibly omega-3 fatty acids -- may help lupus symptoms, this is still an unanswered question. The role of antioxidants in disease progression and activity is a relatively under-studied area of research.

It is important to discuss any major change in your diet, especially changes that include use of dietary supplements, with your doctor. There may be potential interactions with prescribed medications or other aspects of your care that are important for your physician to evaluate.