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Previous Topics
Before you read this please remember I am not a doctor, nor am I giving you any medical or therapeutic advice. This is a summary from a variety of different sources I have researched in order to help shed some light on the subject. This month I am addressing your family and by doing so I hope you, the lupus sufferer, will be able to see what they must go through. Your illness not only effects you--It has an effect on everyone around you.
LUPUS FLARES
This will focus on lupus flares, and the signs and symptoms that may signal an oncoming exacerbation of the disease. This topic is important, as a lupus patient must learn to take an active role in his or her health, and to monitor symptoms and changes in health status.
By being proactive, you and your physicians can work together to keep you healthy, and prevent any serious flareups of the disease.
How can I tell if my lupus is active?
When a lupus flare comes on, people will usually notice a return of the symptoms they experienced previously, but sometimes the onset of new symptoms. These may include, but are not limited to: fever, achy joints, swollen joints, an increase in fatigue, perhaps a loss of appetite, rashes, hair loss, sores or ulcers in the mouth or nose. A temperature over 100 degrees, not due to an infection, is often a helpful sign.
When should I call the Doctor?
You should call the doctor about any change in 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.
If you have a combination of symptoms such as severe headache with neck stiffness and also fever could be serious and you need to let your doctor know about it.
Does Stress Induce Flares?
Flares often follow marked stress.Precipitating stresses can be either physical or emotional, or a combination of the two. Many are completely unpredictable-an acute infection or injury, sudden death in the family, the loss of a job, the breakup of a long-term relationship. But others can be anticipated; by simply demanding too much of yourself and, for example, scheduled too many work and social commitments (what used to be called "burning the candle at both end") or overloaded academic schedules the first year of college.
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.
The course that lupus takes is highly variable. 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 course where they have a chronic state of flare and have symptoms day-in and day-out.
Even if your doctor has treated hundreds of lupus patients, and from past medical history of an individual patient, he/she can make an educated guess about the effects - and side effects - of a prescribed medication. They cannot know with absolute certainty that the drug will perform as hoped and they cannot promise a flare-free future.
Muscle Pain in Lupus
This focus is on muscle pain in lupus, and the various types of musculoskeletal problems which patients can suffer from. Also stressed is the importance of exercise in preventing muscle deconditioning in lupus patients.
LUPUS MYOSITIS
Unlike the joints, the muscles can be seriously damaged by SLE. This damage may result in muscle weakness and loss of strength unless early, appropriate treatment is given. Inflamed muscles may not only be painful, but may also be tender to the touch. Muscle weakness is the most common symptom of lupus myositis.
Characteristically, the muscles of the trunk of the body are affected (i.e., neck, pelvic girdle and thighs, shoulder girdle and upper arms). Pain in the small muscles of the hand or weakness of the grip are not symptoms of SLE myositis. However, nerves as well as muscle fibers can be caught up in the inflammatory process and, occasionally, weakness of the wrists and hands or the ankles and feet may occur as a result of nerve damage.
Diagnosis. The diagnosis of SLE myositis is relatively straightforward. There are chemical enzymes (e.g., CPK, SGOT, SGPT, aldolase) which are normally concentrated within muscle fibers and which escape into the blood circulation when muscle fibers are being damaged by inflammation. Thus, tests for these chemicals in the blood are abnormal in SLE myositis. These tests can also be used to determine the severity of muscle involvement: more severe myositis results in a higher level of these enzymes in the blood. Such tests are therefore useful in the diagnosis of SLE myositis, and in following the course of the disease and its response to therapy.
Just as the electrocardiogram (EKG) reflects damage to heart muscle, the electromyogram (EMG) can be used to determine the character of muscle damage in lupus myositis. When inflammation is present, the EMG shows a characteristic pattern of electrical response. A microscopic examination of a sample of muscle tissue (biopsy) may also be taken from a painful muscle to confirm the presence of inflammation and to help identify the severity of the inflammation.
Treatment. Corticosteroids (prednisone) are necessarily prescribed for the treatment of SLE myositis. High doses (50 mg. per day or more of prednisone or equivalent) are initially given for prompt suppression and control of the inflammation. The steroid dose is gradually reduced as the inflammation subsides, as determined by the patient's symptoms and enzyme levels in the blood. The vast majority of people with lupus respond promptly and well to corticosteroids. It is seldom necessary to augment treatment with cytotoxic or immunosuppressive medications.
Once the acute, inflammatory phase is past, a well directed exercise program should be started to help the patient regain normal muscle strength and function.
MUSCULOSKELETAL COMPLICATIONS OF SLE AND ITS THERAPY
Corticosteroids, either taken alone or in combination with cytotoxic agents, are used to control certain manifestations of lupus (e.g., major organ involvement, myositis, severe blood abnormalities). Such therapy, when required in high and sustained doses, can sometimes result in bone damage and muscle weakness. However, such complications are seldom due to the effects of the medications alone, but are often due to a combination of factors. For example, lupus patients may be more susceptible to infections, including joint infections, because of the use of corticosteroids and immunosuppressive medications.
People with SLE who have been taking steroids for prolonged periods of time can develop ischemic necrosis of bone (also called aseptic necrosis or avascular necrosis). This condition is caused by altered blood flow to a portion of bone which results in the death of that area of bone. As the body repairs this area of dead bone, a weakening of the bone occurs and a portion of the bone surface may collapse. The hips, shoulders and knees are the areas that are most commonly affected. The initial symptom of ischemic necrosis is pain when the joints are being moved or bearing weight. As the condition progresses, pain is also felt when the person is at rest, especially at night time. Decreased range of motion in the joint may eventually follow. There is currently no medical treatment for this condition, but needle decompression of the bone surgically appears to retard the process. In some people with lupus, total joint replacement becomes necessary to solve the problem.
Prolonged treatment with corticosteroids may also put a patient at a higher risk for development of osteoporosis. Osteoporosis, a condition in which bone mass is decreased, means that the individual is at higher risk of bone fracture and compression of vertebrae in the spine. Osteoporosis is a common problem, especially for elderly and physically inactive individuals, whether or not they have lupus or have taken steroids. Women are at a much higher risk of developing osteoporosis than men because of their smaller bone mass. The use of calcium and Vitamin D, in addition to regular exercise, may help prevent osteoporosis.
A regular, well-designed exercise program is important to help prevent muscle weakness in people with lupus myositis.
"A Gentle Exercise Routine May Help Muscle Pain in Lupus"
written by Dr. Robert M. Bennett
Professor of medicine, Director of Division of Arthritis & Rheumatic Diseases
at the Department of Medicine, Oregon Health Sciences University,
Portland, Oregon - USA
Musculoskeletal pain is a common problem, sometimes a disabling problem, in patients suffering from Lupus. Musculoskeletal is an umbrella term which encompasses pain coming from joints, bones, tendons, ligaments and muscles. The arthritis which accompanies lupus is well recognized and usually easy to diagnose. Whereas arthritis in lupus patients is usually a direct result of the disease itself, muscle pain in lupus patients is not always related directly to disease involvement, but may be due to complications of the disease, medications, deconditioning, and the fibromyalgia syndrome.
Corticosteroids Involved
Inflammation of muscle (so-called myositis) occurs in about 10% of lupus patients. The major symptom is muscle weakness. This weakness usually involves the muscles used in standing up from the sitting position and raising the arms above the head. When this inflammation is particularly severe, the muscles may also be sore and tender. This form of muscle disease seems to be more common in patients with mixed connective tissue disease. Weakness, with or without muscle pain, may occur in patients who have been on high doses of corticosteroids for a long period of time (so called steroid myopathy).
Muscle Tears = Pain
Drug induced muscle weakness occasionally occurs in patients treated with antimalarial agents. The probable cause of muscle pain drug induced muscle disease is a true weakness which results in a heightened tendency to develop small tears and hence, pain. A similar phenomenon is responsible for the muscle pain in patients who have a particular debilitating course in which an inability to be physically active has caused muscle deconditioning.
Artery Clogging Risk
Patients with lupus are at an increased risk of developing clogging of their arteries due either to atherosclerosis (cholesterol depositing) or blood clots (especially in those patients who have high levels of anticardiolipin antibodies) and this may result in the condition called intermittent claudication. Symptoms of this are very specific with pain in the calf muscles on ambulation and resolution of the pain on rest.
This is important to recognize as sometimes there are surgical options for treatment.
Charley Horses Common
Cramps or charley horses are not an uncommon occurrence in lupus patients - the precise cause is not known. Basically charley horses are involuntary contractions of muscles, particularly the calf and lower limbs, which are intensely painful, until the muscle is passively stretched by the patient. Some patients' cramps are related to low levels of calcium or potassium. Electrolytes should be checked before self-treatment.
Fibromyalgia Common
Patients who have been on high doses of corticosteroids that have been rapidly reduced often develop painful, aching muscles; this condition has been called "steroid pseudo-rheumatism" and it is usually self-limiting. However, steroid pseudo-rheumatism may evolve into a condition called fibromyalgia. Dr. Daniel Wallace has estimated that fibromyalgia occurs in some 20% of the patients whom he follows. Fibromyalgia is currently estimated to involve some 4% of women in the United States and is one of the commonest reasons for rheumatology office visits. Most patients with fibromyalgia have a sleep disorder in that they do not get restful sleep, which in itself leads to severe fatigue.
Fibromyalgia is a clinical diagnosis with no confirmatory laboratory tests and for which there is currently no cure. It is important that fibromyalgia, in association with lupus, be recognized by the physician, otherwise inappropriate treatment, such as escalation of corticosteroid dosage, may be given without benefit.
Exercise Helpful
It is apparent that there are many causes for muscle pain in patients with lupus and it requires careful evaluation to make a correct diagnosis. However, whatever the cause of muscle pain, its impact can be minimized by maintaining a gentle exercise routine to prevent muscle deconditioning (e.g. regular walking, or use of an exercycle).
LUPUS ARTHRITIS
The joint pain of lupus arthritis often comes and goes. Individual attacks may last several days or weeks and then subside, only to recur at a later date. The joints farthest from the trunk of the body (i.e., fingers, wrists, elbows, knees, ankles) are most frequently involved, usually several at a time. Stiffness and pain in the morning, which improves as the day goes on, is characteristic of lupus arthritis. Later in the day, as the individual becomes more tired, the aches may return.
Another characteristic of lupus arthritis is that the pain is usually symmetrical, which means that it affects similar joints on both sides of the body. Therefore, a single, chronically painful and swollen joint, even in a person who has been diagnosed with lupus, is most likely due to some other cause.
Unlike osteoarthritis, lupus arthritis does not usually cause deformities or destruction of the joints. This lack of damage to the joints is observed both clinically and by x-ray, even after months of joint symptoms
Diagnosis
The pattern of joint pain and the setting in which it occurs are the best clues in determining if the pain is caused by SLE or not. X-rays of the painful joints are usually normal in people with lupus arthritis. An examination of the synovial fluid within a swollen joint may be performed to determine if there is a low grade inflammatory reaction. However, these studies are used to rule out other possible causes for the joint pain, and not to establish a diagnosis of SLE. In fact, when arthritis is the only symptom of lupus, diagnosis can be very difficult, if not impossible. In these cases, careful observation and re-evaluation by a physician as other symptoms of SLE evolve is essential in making a diagnosis of lupus.
Laboratory tests such as the anti-nuclear antibody (ANA) test and the test for rheumatoid factor can sometimes be helpful. At least 67 percent of persons with rheumatoid arthritis will have an antibody (rheumatoid factor) in their blood. At least 95 percent of persons with SLE will have various forms of another antibody (anti-nuclear antibody) in their blood. However, it must be emphasized that neither of these antibodies is specific for rheumatoid arthritis or SLE. Each occurs in about 25 percent of patients with either disease, and in a large number of other conditions.
Treatment
One of the most common misconceptions about arthritis is that there is no satisfactory treatment currently available. On the contrary, proper and early treatment for most forms of arthritis does exist, and can significantly retard joint damage and lessen the pain of arthritis.
Lupus arthritis is usually treated with non-steroidal, anti-inflammatory medications (e.g., aspirin, ibuprofen, naproxen). These medications are effective in the majority of cases and are usually well tolerated. However, when this line of therapy is not effective, antimalarial drugs such as hydroxychloroquine (Plaquenil) may be added. Corticosteroids (prednisone) are used rarely and only when the joints remain swollen and painful despite other treatment. Cytotoxic medications should not be used to treat only lupus arthritis. It is also important that a person learn joint protection procedures to be able to rest his or her joints during flares of lupus arthritis.
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Antibiodics
Should I or Shouldn't I?
Patients need to develop an increased awareness of lupus and its relationship to infections. Hopefully this topic will give you some help with coping more effectively. The bottom line is that lupus patients are more prone to infection, and less able to fight them. In some cases, infections are known to trigger lupus flares, and may be equally difficult to distinguish from a lupus flare.
Lupus patients are more susceptible to infection than most other people for two reasons:
 Lupus directly affects a person's immune system, reducing the ability to prevent and fight infection.
 Many of the medications and treatments used in lupus can weaken the immune system, making the patient more prone to infection.
Infections in lupus patients tend to require special attention and care. Preventative action such as getting your annual flu shot can help decrease this common, and potentially serious infection. Of course, your doctor may have his or her own approaches to the issue of immunization for lupus patients, so we urge you to first discuss this with him/her. If you are allergic to eggs, you should not receive the flu shot.
Lupus patients are more vulnerable to infections and less able to fight them. This is a result of immune system abnormalities and the use of corticosteroids (Prednisone) and immunosuppressive therapy (Cytoxan and Imuran). Interestingly, approximately 80% of lupus patients take corticosteroids at some point during the course of their disease, and 10-30% undergo immunosuppressive therapy. Even those who do not take either of these drugs are still more susceptible to unusual infections. Because their immune system defenses are down, it is particularly important that lupus patients obtain prompt treatment for infections. Many rheumatologists notice that infections tend to last longer and require antibiotics for longer periods of time in their SLE patients. Fortunately, only a small group of patients need aggressive hospital treatment .
Bacterial infections in lupus patients are treated in the same manner as in the general population. Even those taking high doses of immunosuppressive drugs for their lupus usually respond well to most types of antibiotics. Unlike 20 years ago, when the most common cause of death in lupus patients was infection, infections today are often treated more aggressively and serious complications are usually prevented.
The Facts on Antibiotics
You should also note that antibiotics do not kill viruses. Penicillin and most antibiotics work only against bacterial infections, such as strep throat, and not viral infections such as colds and flus. Both viruses and bacteria may produce similar symptoms, but they are very different, and do not respondthe same way to treatment. Antibiotics attack the cell walls or other targets that are only found in bacteria. Antibiotics have no effect on viruses, because the virus lacks the target. *Remember, most viral infections have no cure and must simply run their course.
The rule for antibiotics is as follows: Take them only when your doctor prescribes them. Take them for the full length of time recommended. It is important to finish the entire course of antibiotics even if you are feeling better. Otherwise most resistant bacteria may resurge leading to either relapse of this illness and in the longterm, development of "superbugs". This is going to be a serious problem which people don't take seriously or understand how their not finishing antibiotics can cause problems in the bigger picture.If you have leftovers, do not keep them for future use. And, don't take them for a cold or the flu.
Antibiotics That Should be Avoided in Lupus
Many of the antibiotic classes that are used for the treatment of urinary tract infections, pulmonary infections, strep throat, and other bacterial infections are safely used in lupus. Your doctor may choose an antibiotic based on his or her best guess as to which bacteria is responsible for the infection. Laboratory cultures can also help the physician identify the bacteria and the most suitable antibiotic to take. Choosing an antibiotic also depends on how well the drug is absorbed, how quickly the body eliminates the drug, the nature and seriousness of the infection, potential side effects, possible allergies, as well as the cost of the drug.
Lupus patients should be aware that the use of Sulfa antibiotics should be avoided. This type of antibiotic can increase photosensitivity, and has also been shown to cause allergic reactions in some patients. Cycline antibiotics are sometimes used to treat acne (Minocycline, Doxycycline, and Tetracycline) and may be implicated in some activation of established SLE. Studies have shown that Minocycline should also be avoided in those with a history of SLE in a first degree relative. There is also weak evidence that this group of drugs may cause drug induced lupus, although the more common association for drug induced lupus is still procainamide (used to treat irregular heart beats) or hydralazine (used to treat high blood pressure).
Using Antibiotics Preventatively
Patients at high risk for infection often benefit from antibiotic prophylaxis before dental treatment or surgical procedures. Prophylaxis means that antibiotics are administered even if there is no actual infection. To be effective and to avoid the development of resistance in bacteria, preventive antibiotic therapy must be used for only a short time, and the antibiotic must be potent against the particular bacteria.
Lupus patients can also take preventative measures to minimize their exposure to infections. Since bacterial infections can be contagious, one of the best things you can do is wash your hands frequently and avoid touching your face. Try to get regular exercise and eat a balanced diet to maximize your resistance to infections.
The more you know about the medications that your physician has prescribed the more likely you are to adhere to the treatment. As always, check with your physician or pharmacist if you have any questions, as they are your best sources of up to date information.
Disclaimer:
The above information was obtained from reading different sources and their interpretations about hair loss and lupus. I wrote what I found to be the agreed majority on the subject. It is a basic overview for SLE and not intended to be taken as medical fact and/or advice. Lupus has many faces and not everyone shares the same complications and/or symptoms. Please contact your doctor if you are having any hair problems.
My Lupus World Index
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