The following glossary was prepared to help the consumer become familiar with the most common questions.
How does one determine how much calcium to take daily?
If a person is on Prednisone the recommended dose of calcium is 1,500 mg per day of calcium carbonate, citrate or other forms of calcium supplements based on The American College of Rheumatology’s guidelines for the prevention and treatment of corticosteroid-induced osteoporosis. Vitamin D 800mg per day should be added if a person takes corticosteroids.
What is the relationships of 1, 25 (OH)2 Vitamin D3 to lupus “flare-ups”?
Sun exposure can cause lupus flares. Sun transforms inactive Vitamin D to active Vitamin D in the skin. Lupus patients who correctly practice.
I was diagnosed with lupus 2 months ago. I never seem to get enough sleep. Is there any type of vitamin or herbal remedy that I can take to boost my energy level? I have been drinking a lot of caffeine, is this harmful?
If you are not getting sufficient sleep then it is no wonder that you are tired. Your doctor should address your sleep problem. I have found low-dose tricyclic medications to be helpful in restoring restful sleep. You should avoid caffeine in the evening since it can aggravate your insomnia. I think its premature to seek remedies to boost energy level; until sleep disturbance is improved. If you are still very tired, it may be an indication that the lupus is active and treatment with hydroxychloroquine may improve your fatigue. Ther
e are no reliable health-foods that will boost your energy but preliminary studies from several centers have shown that DHEA taken at around 200 mg a day can improve the sense of well-being and energy in lupus patients.
I have lupus and sometimes I experience spells of dizziness. What could be the cause of this?
Dizziness is not a specific symptom of systemic lupus. There are numerous causes of dizziness ranging from innocent wax in the ear canal to vascular insufficiency of parts of the brain. Severe, recurrent or persistent dizziness should be investigated and not assumed to be a manifestation of lupus.
Some days I am able to focus and concentrate while others, I am easily confused with simple tasks. Why can I be sharp some days and others I am not? Will this continually get worse? Is there anything to do to help lessen my frequency of foggy days?
Foggy days are seen in association with many rheumatic diseases, including lupus a
nd fibromyalgia. People with depression, women with hormone imbalances and other conditions also experience foggy days. Discuss these other possibilities with your doctor because, if present, they may require additional therapy.
How is cognition impaired?
The following key components of cognition that could be impaired are: Simple attention, the ability to register and retain information Reasoning, problem solving Executive skills and complex attention,planning, organizing, sequencing information Memory, learning, recall Visual spatial processing, recognizing visual patterns Language, verbal fluency Psychomotor speed, ability to rapidly produce written and oral information
What can be done about my teenage daughters memory and concentration problems besides support and letting her teachers know?
It is very important to inform her teachers about your daughter’s difficulty with memory and concentration and provide some explanation of her medical condition. If you have noticed that certain things such as reviewing schedules or listing tasks is helpful, the teacher may be able to do something similar in the classroom. In addition, members of the Rheumatology Team may be able to talk with the school and discuss ways to help with these problems. Another consideration is having neuropsychiatric testing done by the school district or a community professional. The goal of neuropsychiatric testing is to assess the level of impairment and to assist your daughter and others in how to compensate for her areas of impairment. Such things as mental rehearsing of activities and visual cues (such as written notes) can be helpful ways to increase the success of your daughter and raise her self-esteem.
What is the connection between lupus and psychosis? As lupus patients, my sister and I have both experienced this.
Systemic lupus erythematosus can cause inflammation of virtually any tissue of the body. Depending on the tissue affected and the intensity of the inflammation,
the function of the organs can be disturbed. Brain inflammation in lupus is referred to as cerebritis. When lupus affects the brain, it can lead to headache, seizure, stroke, or psychosis. Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations. Psychosis is not common in patients with lupus and occurs when the disease is first diagnosed under 3% of patients. It occurs at sometime during the course of the disease in 5% of patients. Moreover, though infrequent, psychosis is now used by doctors as a classical criteria for the diagnosis of systemic lupus. The psychosis of lupus is typically treated with antipsychotic medications, high doses of cortisone-related (steroid) medications, such as prednisone or prednisolone, and powerful immune suppression drugs, such as cyclophosphamide (Cytoxan). It should be noted that steroid medications, such as prednisone and prednisolone, can cause psychosis! (This is not common, but can occur.) Therefore, a patient with lupus could develop psychosis as a toxic side effect of the prednisone. For example, a lupus patient taking prednisone for pleurisy could develop psychosis a side effect of the drug. Psychosis, when it is a result of the lupus disease itself, is referred to as one of the neurpsychiatric manifestations of lupus.
What kind of dental problems does a person with lupus have to deal with?
A person with lupus, depending on the type of disease, generalized or the localized form, and the type of medication they are taking, may face a variety of different dental problems. Because lupus is an autoimmune disease that affects the collagen tissue in the entire body, the collagen component of the mucosa of the mouth, including the gingival tissue and salivary glands also present the symptoms seen elsewhere in the body. A person with lupus demonstrates increased levels of xerosthemia or dry mouth leading to increased levels of caries, periodontitis and candidiasis. The gingival tissue may become red and appear to be desquamating. What are called leukoplakic lesions (white scaly tissue detaching from the underlying tissue) can appear on the skin or mucosa of the cheek, palate, or vermillion border of the lips. These lesions need to be diagnosed and treated as necessary.
Can a person with lupus go under anesthesia when undergoing dental treatments?
A person with lupus who is undergoing dental treatment usually will be administered local anesthetics such as lidocaine, xylociane, or marcaine. Depending on the type of medication the person is on, such as steroids, cyclosporin, methotrexate, their side effects may have an influence in the healing capability of the individual from a mostly periodontal standpoint. For example, cyclosporin causes gingival hyperplasia, and periodontal treatment is necessary for individuals who are placed on cyclosporin. Steroids affect the immune system, and a patient with Lupus who is being administered steroids will not demonstrate the same healing capacity as an average person. The person with lupus may need to be administered antibiotics following a dental treatment to prevent possibility of an infection, should the person have a compromised immune system. The more serious concerns are the cases with systemic lupus whose circulating blood has been affected, hence their coagulation system. Serious bleeding problems may occur. Consultation with the physician in controlling any bleeding problems before a dental treatment is to be considered. Also the person with systemic lupus may have their heart and its lining involved, and for this reason they are more prone to endocarditis, which is a serious infection of the lining of the heart that can be induced with dental treatment.Therefore, the person with lupus needs to be prophylactically pre-medicated with antibiotics.
Is there a benefit for a patient with lupus choosing a dentist who has knowledge of Lupus and or other autoimmune diseases?
A dentist or any clinician treating a patient with lupus has to be aware of the intraoral symptoms of this disease, as at times this disease first manifests itself in the mucosal lining of the mouth. These lesions can at times be treated with topical ointments that contain steroids. Also, the clinician needs to be aware of pre-medicating the patient with antibiotics before commencing treatment, should the heart be involved. He also needs to be aware of any possible systemic conditions such as compromised healing or bleeding problems that may occur during or after treating the patient. The drymouth syndrome in lupus that can rise to dental caries (decay) and periodontitis can be helped with a variety of adjunctive treatments such s fluoride trays, regular debridement of the periodontal tissues, and dental visits to detect decay. Clinician needs to be aware of informing and educating the person affected by lupus on how to take care of their oral health.
What can I do About Dry Mouth?
If your salivary glands still produce some saliva, you can stimulate them to make more by chewing gum or sucking on hard candy.However, gum and candy must be sugar free because dry mouth makes you extremely prone to cavities. Take sips of water or another sugar free drink often throughout the day to wet your mouth, especially when you are eating or talking. Note that you should take sips of water—drinking large amounts of liquid throughout the day will not make your mouth any less dry. It will only make you urinate more often and may strip your mouth of mucus, causing even more dryness. You can soothe dry, cracked lips by using oil- or petroleum-based lip balm or lipstick. If your mouth hurts, the doctor may give you medicine in a mouth rinse, ointment, or gel to apply to the sore areas to control pain and inflammation. If you produce very little saliva or none at all, your doctor might recommend a saliva substitute. These products mimic some of the properties of saliva, which means they make the mouth feel wet, and if they contain fluoride, they can help prevent cavities. Gel-based saliva substitutes tend to give the longest relief, but all saliva products are limited since you eventually swallow them. At lease two drugs that stimulate the salivary glands to produce saliva are available. These are pilocarpine and cevimeline. The effects last for a few hours, and you can take them three or four times a day. However, they are not suitable for everyone, so talk to your doctor about whether they might help you. People with dry mouth can easily get mouth infections. Candidiasis, a fungal mouth infection, is one of the most commonly seen in people with Sjogrens. It most often shows up as white patches inside the mouth that you can scrape off, or as red, burning areas in the mouth. Candidiasis is treated with antifungal drugs. Various viruses and bacteria can also cause infections; they are treated with the appropriate antiviral or antibiotic medicines.
Should lupus patients be pre-medicated with antibiotics before dental work?
Yes, to protect them from potential infection. Also, some patients have a Libman-Sacks endocarditis where a heart valve can become infected after dental work. There is no good test for identifying this abnormality short of expensive, specialized test or heart surgery.
Can a person with lupus have local anesthesia when undergoing dental treatments?
A person with lupus who is undergoing dental treatment usually will be administered local anesthetics such as lidocaine, xylociane, or marcaine. Depending on the type of medication the person is on, such as steroids, cyclosporin, methotrexate, their side effects may have an influence in the healing capability of the individual from a mostly periodontal standpoint. For example, cyclosporin causes gingival hyperplasia, and periodontal treatment is necessary for individuals who are placed on cyclosporin. Steroids affect the immune system, and a patient with Lupus who is being administered steroids will not demonstrate the same healing capacity as an average person. The person with lupus may need to be administered antibiotics following a dental treatment to prevent possibility of an infection, should the person have a compromised immune system. The more serious concerns are the cases with systemic lupus whose circulating blood has been affected, hence their coagulation system. Serious bleeding problems may occur. Consultation with the physician in controlling any bleeding problems before a dental treatment is to be considered. Also the person with systemic lupus may have their heart and its lining involved, and for this reason they are more prone to endocarditis, which is a serious infection of the lining of the heart that can be induced with dental treatment. Therefore, the person with lupus needs to be prophylactically pre-medicated with antibiotics.
Is there an association between lupus and problems with the teeth and gums?
Many individuals with SLE have a problem making enough saliva, a condition known as secondary Sjogren’s syndrome. The dryness of the mouth may make swallowing or speaking difficult at times. The lack of saliva also can lead to cavities in the teeth, particularly at the gum line. Yeast infections in the mouth are also common when saliva is deficient. Careful attention to dental hygiene is mandatory in Sjogrens syndrome.
I currently work in and office with fluorescent lights. Will this affect my lupus?
Some physicians feel that direct exposure fluorescent lights might cause some persons lupus to flare. If you feel you might be sensitive to fluorescent lights, use incandescent lights instead. If this is not possible, make sure that the fluorescent light is covered by a lens, which would be expected to negate any effects of fluorescent lighting.
My teenage daughter has lupus and has a passion for playing soccer. Will playing outside effect her lupus? If she uses sunblock will that be enough? I want her to stay active, what can we do?
Advise your daughter to wear a #30 or higher SPF sweat-resistant sunscreen and a brimmed hat. Make sure she drinks plenty of fluids during the game and she should wear long-sleeved shirts, long shorts, and long socks. She might want to try the Solumbra line of clothing embedded with sun protection in the fabric If she does become ill while playing soccer despite these precautions perhaps she could be an assistant coach, score keeper or team manager.
Why is exercise to important to lupus patients?
Exercise helps strengthen muscles and bones. Exercise stimulates the brain to secrete endorphins and enhephalins—brain chemicals that help with pain control and immunity. Exercise also helps improve balance and in dealing with stress. Check with your doctor before starting any exercise programs
My doctors says I should exercise every day, I have fibromyalgia and lupus – I am in constant pain and am not able to walk well, let alone run. Is there anything else I can do?
With both lupus and fibromyalgia, it’s important to maintain an active exercise program since physical inactivity may lead to deconditioning of muscles and worsening of pain. Some alternatives to walking include aquatic exercise programs and stationary, recumbent bicycling. A short course of physical therapy may be warranted to tailor a home exercise program to your abilities.
Is inflammation with eyelids (blepharitis) and eye swelling lupus connected? Also, do dry eyes accompany either of these?
Inflammation of the conjunctiva, the sclera, the iris and the uvea can be seen in lupus resulting in painful red eyes. Patients with lupus can have swelling of the tissue around the eyes called periorbital edema. Lupus is also associated with dry eyes.
I was diagnosed with lupus 2 months ago. I never seem to get enough sleep. Is there any type of vitamin or herbal remedy that I can take to boost my energy level? I have been drinking a lot of caffeine, is this harmful?
If you are not getting sufficient sleep then it is no wonder that you are tired. Your doctor should address your sleep problem. I have found low-dose tricyclic medications to be helpful in restoring restful sleep. You should avoid caffeine in the evening since it can aggravate your insomnia. I think it's premature to seek remedies to boost energy level” until sleep disturbance is improved. If you are still very tired, it may be an indication that the lupus is active and treatment with hydroxychloroquine may improve your fatigue. There are no reliable health-foods that will boost your energy but preliminary studies from several centers have shown that DHEA taken at around 200 mg a day can improve the sense of well-being and energy in lupus patients.
When I start to get even the least bit tired, I notice that I get very confused. Is this associated with lupus?
Forgetfulness or the inability to concentrate is a common result of fatigue from any cause. One of the major consequences of having any autoimmune disease including SLE is fatigue in a more extreme form. Many of the medications that lupus patients receive for treatment can cause mental slowing or muddled thinking. Simple dehydration and the psychological depression that can accompany a chronic disease can cause similar thought problems. More profound lapses in memory or loss of ability to perform routine tasks should be taken seriously. Serious loss of thinking abilities may be a warning sign of lupus cerebritis, a manifestation of lupus disease activity in the nervous system. In addition, some researchers feel that a long-term effect of lupus disease may be the development of deficits in certain neurognitive processes such as calculating abilities and multitasking. If despite adequate rest and fluid intake, mental symptoms such as confusion persist, lupus patients should discuss their symptoms with their physician.
Is there anything that will make my butterfly rash go away? Are there any specific powders or foundations that will reduce the redness?
One of the skin signs of systemic lupus erythematosus is the so-called butterfly rash. In people with light skin tones, it manifests as a persistent redness that mimics this insect standing on the nose with its wings spread over the cheeks. It is usually asymptomatic, made worse by sun exposure. Patients with this rash have internal manifestations; therefore treatment of the underlying condition will improve the rash. In general, so-called physical sunscreens containing zinc oxide or titanium dioxide are best to use in the morning. From a cosmetic point of view, wearing a green powder or concealer under a skin toned foundation is very helpful in reducing redness.
What factors contribute to flare-ups and what can a person do to help the body go into remission?
In most instances, unfortunately, the specific factors that cause a flare-up of SLE are unknown. There certainly can be a flare-up after sun exposure, during or after pregnancy and during an illness. The importance of “stress” in flare-ups is difficult to sort out since stress is so indefinable. Everyone has a different opinion on what is stressful in their life. It is natural for patients with SLE to want to identify what caused their flare-up and in retrospect will blame a stressful event that occurred but it may not necessarily be the case. It would be wonderful if a patient could will themselves into a remission, but we have no proof a person can do that. However, a healthy lifestyle can help tremendously in helping a patient cope with lupus and maximize their individual health. This includes adequate sleep, regular exercise, a well-balanced diet and seeing your doctor regularly and taking medication as directed. Also, discuss with your doctor diet and any supplements or herbs you may be taking. Some of these may detrimental to your illness or may interfere with the medication you are taking. Lastly, but very important – DO NOT SMOKE.
What can be done about my hair loss? Is it permanent?
Hair loss in lupus can be a consequence of active inflammation, medication given to treat lupus such as steroids, or lupus skin lesions in the scalp. When lupus is successfully treated and inflammation subsides, hair growth is common. The effect of medications upon the hair is also temporary. Cutaneous lupus can be scarring or non-scarring. In the former case, focal areas of hair loss can be permanent. Hair loss is managed by treating the underlying disease. Rogaine hair applications promote hair growth but do not decrease hair loss.
What hair coloring products are to use? I have lupus, my mother has Rheumatoid Arthritis. What ingredient do we want to avoid?
Paraphenylaminediamine is an aromatic that is found in many hair coloring solutions. Under certain circumstances, aromatic amines can produce a drug-induced lupus (examples, hydralazine for high blood pressure, INH for tuberculosis), or flare the disease (as in hydralazine compounds found in tobacco smoke). In my experience, occasional lupus patients who use hair-coloring solutions have an allergic like reaction, which causes their disease to flare for a few days. The overwhelming majority of lupus patients have no problem.
My hair has started to thin quite rapidly and I wonder if there is anything I can do for it?
Thinning of hair can be due to lupus or a medication side effect. Some dermatologists suggest biotin—a nutritional supplement to help with hair growth. Not using chemicals such as hair dyes and permanent waves can also be helpful in preventing hair loss. Ask your doctor whether he or she thinks topical monoxide (Rogain) would be safe for you to try. Use very gentle shampoos and try not to wash your hair every day. Use a wide toothed comb on your hair and massage your scalp each day.
Can lupus patients color their hair?
Some permanent wave hair dyes contain phenylaminediamine, and aromatic known to produce positive lupus blood tests in mice. Conflicting reports have appeared whether or not it can cause lupus or lupus-like reactions. A few of my patients have had disease flares lasting a few days when using dyes containing this chemical, but most have no problem.
Three to four yeas ago my hair stopped growing and falling out. It is doing fine now. I understand due to lupus. Now my fingernails are splitting and the top layer is coming off. Is this due to Lupus?
Hair loss in lupus is due to discoid lesions in the scalp, generalized inflammation or an unsatisfactory metabolic state due to chronic illness. Additionally, steroids and chemotherapies can promote hair loss. Hair loss can occur in one area, as in alopecia aerate, or all over a in alopecia univeralis. Its treatment depends on the underlying cause. Similarly, split nails can be due to the same unsatisfactory metabolic state associated with hair loss. I usually make sure the there patients have adequate nutritional habits and take one to two multivitamin tablets a day.
How do you know if you are losing your hair? Is it gradual or does it happen in a short period of time? I heard that you lose 100 strands of hair a day, is that true?
Hair loss can be from many causes, too many to delineate. All hair loss, however, consists of two issues: Increased hair falling out and/or less hair noticed on your head. Sometimes these two are seen together; sometimes only one is appreciated and not the other. The average hair loss is 100 hairs a day. These hairs are replaced by new growing hairs as part of the hair cycle. There are many causes of an increased resting hair loss,including illness (such as lupus),medications, giving birth, stress, and severe dieting. One has to lose approximately 50% of the hair of your scalp for a casual observer to notice, but the patient will usually notice immediately if their hair loss goes up to 300 hairs a day. This type of loss starts two to four months after the causative event and can go on for six months until the hair loss gradually stops. It then takes another six months for the hair to grow back. If your hair loss is caused by an agent which dislodges all the active growing hairs, but spares the resting hairs,” one could lose 90% of one's scalp hair in a matter of weeks. A classic example of this type of hair loss is the hair loss we see with chemotherapy, Androgenic alopecia, or male pattern hair loss, occurs slowly and is seen in some aspect in 80-90% of all men and 30-50% of all women. With this common type of hair loss, there may be little to no hair falling out, but the normal hair loss is not replaced by new growing hairs. This is a very gradual hair loss, usually over years.
My hair seems to be growing in slowly. Is there anything I can take to make it grow faster? Why do so many lupus patients have hair loss?
Diffuse hair loss was, but is no longer, one of the criteria for systemic lupus erythematosus. That is because hair loss may be non-specific result of poor health in general. If a patient working with his or her physician can improve their overall well being, then the scalp hair will re-grow. The problem is that some medications, such as prednisone, which is used to treat the condition, can cause hair loss as well. Getting enough rest, eating properly and exercising in moderation is helpful. A word of caution is in order, in regards to vitamin supplements. Some people take vitamins to make their hair grow. This is a fallacy in fact. Too much Vitamin A or betacarotene can accelerate hair loss. Consequently, I discourage taking more than the ordinary daily requirement.