Sacramento Lupus Support Group

kNOw Lupus #31-
Prognosis and a Hopeful Future:

The idea that lupus is generally a fatal disease is a big misconception. In fact, the prognosis of lupus is much better today than ever before. Today people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system.
It is true that medical science has not YET developed a method for curing lupus. And some people do die from the disease.

However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:
•follow the instructions of their physician,
•take their medication(s) as prescribed, and
•know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

kNOw Lupus #30
Infections and Immunizations:

When you have lupus, you are at increased risk for all kinds of infections. There are two main reasons for this higher risk. First, lupus itself can make infections occur more often: the way lupus affects the immune system can sometimes limit the body’s ability to fight off foreign invaders, such as bacteria and viruses. Second, people with lupus often take immunosuppressive medicines to control their overactive immune system. These drugs limit the ability of the body’s immune system to respond, and can leave a person more open to infectious agents.
The most common infections seen with lupus involve the respiratory system (lungs and heart), the skin, and the urinary tract. You are also at an unusually high risk for developing Candida (yeast) infections and shingles (the same viral infection as chicken pox).

These types of infections tend to last longer and so require a longer period of treatment with antibiotics. Sulfa antibiotics, a class of drugs commonly used to treat infections, should be used very carefully to treat infections in anyone with lupus because these drugs can increase sensitivity to light and skin rashes, and can lower white blood cell counts.

You should do your best to avoid anyone who has a cold or other contagious condition. During cold and flu season, wash your hands often to cut down transmission of infectious germs. Also, talk to your dentist and surgeon about preventive antibiotics before you have dental work or other surgery.
Sometimes what appears to be an infection -- with fever and inflammation -- may not be an infection, but a lupus flare. Therefore it is very important to check with your doctor if any sign of an infection appears.

Fever:
If you have a fever of 100 degrees Fahrenheit (F) or higher, you should contact your doctor promptly, as a fever can be a warning sign of a lupus flare or an underlying infection. A high fever can be especially serious if you are taking steroids or chemotherapy drugs.

Vaccines and Immunizations:
Most people with lupus are able to be vaccinated against a variety of diseases with no problems. However, because your immune system may be weakened, you should always talk with your doctor before receiving any vaccine.
If you cannot receive vaccines for common illnesses you can still protect your health in many ways.
•Avoid crowds or wear a mask to prevent respiratory infection.
•Wash your hands well and often.
•Avoid touching your mouth or eyes.
•Consider asking close contacts, such as family members or caregivers, to be vaccinated for influenza, measles-mumps-rubella, and chicken pox if they aren’t already immunized.
•Wear a medical alert bracelet or carry a wallet card that explains that you have a suppressed immune system.

kNOw Lupus #29 - Family Life

Family life will inevitably change when a family member receives a diagnosis of lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible.

There will be emotional considerations as well. As the person with lupus, you may feel guilty about not being able to do the things you once did. You may feel unhappy about the accommodations others in your family have to make on your behalf.

Good communication will be crucial in making sure that home life remains as normal as possible after you are diagnosed with lupus. Sharing information about the illness, including its symptoms, its treatment, and its prognosis, can lessen everyone’s fears and concerns. The most important thing you can do is let family members know the extent of your pain and fatigue. This will help them know when they need to chip in.

A sensible schedule is another good idea. It’s understandable that, after being forced to cancel or postpone favorite activities due to lupus, you may then be tempted to tackle the entire "to-do" list in one day. However, trying to do it all only increases stress and exhaustion, and could trigger a flare. The best approach is to learn to make time for the things that really matter, say "no" to the things that are not as important, and leave the rest of the list for tomorrow -- or the next day.

If you have Internet access, you may want to use it as a quick and easy way to have home delivery of groceries and other supplies when joint pain or extreme exhaustion make driving and shopping too difficult to manage.

kNOw Lupus #28

Diet and Nutrition:
There is no special diet for lupus, despite the numerous claims on the Internet and in various books and other publications. In general, you should try to eat a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains, moderate amounts of meats, poultry, and oily fish, as fish oil has been found to help reduce inflammation.

Omega-3 fatty acids found in oily fish appear to decrease the risk of coronary artery disease and may also protect against irregular heartbeats and help lower blood pressure. For these reasons, omega-3 fatty acids are important for women with lupus, who are at a 5-10-fold higher risk for heart disease than the general population.

One food for people with lupus to avoid is alfalfa. Alfalfa tablets have been associated with reports of a lupus-like syndrome or lupus flares. The lupus-like effects may include muscle pain, fatigue, abnormal blood test results, changes in how the immune system functions, and kidney problems. These reactions may be due to the amino acid L-canavanine (found in alfalfa seeds and sprouts, but not in leaves), which can activate the immune system and increase inflammation.

If you plan to add herbs, dietary supplements, or vitamins to your diet you should first discuss your decision with your lupus doctor. This is especially important as herbs or supplements may interact with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines prescribed to control symptoms of lupus or medication side effects.

You may have to cut back or eliminate certain items from your diet because of the medications you are taking, or because of the damage that lupus has done to certain parts of your body.

Moderate use of alcohol is usually not a problem for people with lupus, but alcohol can lower the effectiveness of some of the drugs used to treat lupus, can cause new health problems, and can make existing problems worse. For example, non-steroidal anti-inflammatory drugs -- such as aspirin, ibuprofen (Motrin®), naproxen (Naprosyn®), and celecoxib (Celebrex®) -- can cause ulcers and bleeding in the stomach and intestines at any time during treatment; the chance of developing an ulcer or internal bleeding increases with alcohol use. Also, anticoagulant medicines such as warfarin (Coumadin®) and the chemotherapy drug, methotrexate, may not be as effective if you are drinking alcohol.

If you have osteoporosis you should eat foods rich in calcium every day to help with bone growth: examples are dark green, leafy vegetables (spinach, broccoli, collard greens), milk, cheese, and yogurt or calcium supplements that contain Vitamin D.

kNOw Lupus #27 - Neonatal lupus

Neonatal lupus is a condition that can occur when anti-SSA/Ro antibodies cross the placenta in pregnancy from the mother to her developing baby. Babies born to women who are positive for anti-SSA/Ro antibodies (even women who do not have lupus) are at greater risk for neonatal lupus, although this remains rare. A number of symptoms are seen in infants who are born with neonatal lupus, most commonly skin rashes or liver involvement, which go away over time as the infant’s own immune system develops, and the mother's antibodies are cleared from the baby’s system. Even more rarely, however, there is a potentially life-threatening heart condition that these babies can be born with, called congenital heart block (CHB). It is possible to diagnose this condition in the baby while it is still in the womb (usually in the second trimester of the pregnancy) by picking up an irregular heartbeat using a special kind of sonogram called a fetal echocardiogram. Early CHB may be reversible with treatment, but in the later stages a baby may require a pacemaker at the time of birth.

kNOw Lupus #26 - Exercise

Just like everyone else, people with lupus need to exercise regularly or engage in some kind of movement, and most people with lupus can take part in some form of activity. All exercise plans should be discussed with your physician or exercise specialist in order to maximize results and minimize possible harm.

If lupus has you on the sidelines rather than in the middle of the action, these
low-impact exercises offered from (lupus.org) may help with some lupus symptoms:

Fit in five

Twice a week, do 8 to 12 repetitions (reps) of each exercise in order. Then repeat the entire series once or twice more. It’s OK to rest for a few minutes between each set of reps.

1. Squats

Stand with feet hip-width apart and arms extended at shoulder height in front of you. Bend knees as you sit back. Rise up to the starting position and repeat.

TAKE IT EASY: Start the move standing in front of a chair; sit down instead of squatting.

2. Alternating lunge

Stand with feet together and hands on hips. Take a big step forward with the right foot and bend your knees. Rise up as you step back to the starting position. Repeat, stepping forward with the left foot, then return to the starting position. That’s 1 rep.

TAKE IT EASY: Grasp a table or the top of a chair for support.

3. Incline pushup

Take a big step back from a countertop and grasp the edges with hands shoulder-width apart. Bend elbows, bringing chest toward the counter. Push up, extending arms to the starting position, and repeat.

TAKE IT EASY: Do the move with your hands pressed against a wall.

4. Reverse crunch

Lie on your back on the floor or a yoga mat. Bend knees and place feet on the floor; extend arms straight down on the floor beside you. Slowly bring knees toward your chest, lifting hips slightly, then lower legs to the starting position and repeat.

TAKE IT EASY: Raise one knee at a time, alternating legs.

5. Bridge

Lie on your back on the floor or a yoga mat. Bend knees and place feet on the floor; extend arms straight down on the floor beside you. Lift hips until your body forms a line from knees to chest; hold hips up for 5 seconds, then lower to the starting position and repeat.

TAKE IT EASY: Don’t lift your hips as high and eliminate the hold.

Activities such as walking, swimming, bicycling, low-impact aerobics, certain types of yoga, Pilates, stretching, or using an elliptical exercise machine will strengthen your bones and tone your muscles without aggravating inflamed joints, while also helping to lower the risk for developing osteoporosis. It’s also a good idea to vary the exercises, so that different muscle groups all get a regular workout.

If you are experiencing swollen joints or muscle pain, you should avoid or at least limit activities that may be demanding on joints and muscles, such as jogging, weightlifting, or high-impact aerobics.

If you find that you tire easily when you exercise, you should pace yourself. The most important thing to remember is to not give up exercising, as muscles that are not used will quickly become weak.

Regular exercise and even simple low-impact movement will:

reduce or minimize stress
help to keep your heart healthy
improve muscle stiffness
increase muscle strength
help prevent osteoporosis
increase your range of motion.

https://www.lupus.org/resources/a-low-impact-exercise-routine-for-lupus

Help Us Solve The Cruel Mystery The Lupus Foundation of America is the largest force in the fight to cure lupus. Read hundreds of articles and resources, and find dozens of ways to get involved. Join us.

kNOw Lupus #25 - Blood Disorder

Blood Disorders:
Blood disorders are common in lupus and can be very important. Hematologists, who are specialists in blood disorders, are often asked to be involved in the evaluation and treatment of patients with systemic lupus erythematosus (SLE).

The principal hematological (blood) issues of interest are:
• Anemia: low hemoglobin or red blood cells
• Thrombosis: excess blood clotting
• Blood transfusion
• Bone marrow testing

Anemia:
The most common blood disorder is anemia, affecting about half of all people with active lupus. Anemia can be measured and discussed in several different ways, including a low red blood cell count, low hemoglobin, or low hematocrit. Each doctor usually has a preference for using a particular term. In the most important sense, anemia means too little hemoglobin.

Hemoglobin is the protein inside red cells that carries oxygen from the lungs to all the tissues of the body. Fatigue, a very common lupus symptom, is generally the first and most common symptom of anemia.

Treatment of Anemia:
The treatment of anemia in lupus depends on its cause. Inflammation can be reduced with drugs such as prednisone. For iron deficiency, iron given orally, such as ferrous sulfate or ferrous gluconate, is almost always effective. In the case of bleeding, the source should be determined in order to correct the problem. Erythropoietin or darbepoietin may be given to individuals with kidney problems to stimulate the bone marrow to make more red blood cells. The same may be given to patients with anemia who are taking azathioprine or cyclophosphamide. For hemolysis due to antibodies, prednisone and other drugs are often helpful, but sometimes the best treatment is splenectomy. This is an abdominal surgery to remove the spleen (which may be done laparoscopically, that is, with small incisions in the abdominal wall). The treatment of TTP is complex, requiring blood plasma exchange by machine.

Thromobocytopenia:
Blood platelets are tiny pieces of megakaryocytes, which reside in the bone marrow. A low platelet count is termed thrombocytopenia. As the platelet count falls, bruising, tiny red bleeding points in the skin called petechiae (especially on the lower legs), nosebleeds, or other bleeding may occur. Although there are many possible causes of thrombocytopenia, in lupus it is almost always due to antibodies. A low platelet count may briefly be aggravated by infection. Whereas thrombocytopenia is common in lupus, only occasionally does serious bleeding result. On rare occasions, a person with lupus may have antibodies against both red blood cells and platelets.

Treatment of Thrombocytopenia:
Most people with lupus who have mild to moderate thrombocytopenia do not need treatment. When necessary, prednisone and intravenous gammaglobulin (called IV Ig) are commonly used. Other drugs, such as azathioprine or rituximab, also can help. As in hemolysis due to antibodies, thrombocytopenia can sometimes be relieved by splenectomy. The doctor will advise whether non-steroidal anti-inflammatory drugs (NSAIDs) can be used safely when thrombocytopenia is present.
Be sure to ask your doctor whether NSAIDs can be used safely when thrombocytopenia is present.

Leukopenia and Neutropenia:
White blood cells are actually made up of several different types of cells, including neutrophils (also called granulocytes), lymphocytes, and monocytes. They are involved in a person's defenses against infection. A reduction in the number of white blood cells is called leukopenia; a particular reduction in granulocytes is called neutropenia (or granulocytopenia).

Leukopenia and neutropenia are very common in active lupus, but rarely are white cell counts low enough to lead to infection. Counts may be lowered by azathioprine, cyclophosphamide, and some other drugs. Therefore, white cell counts are always monitored during treatment with these agents. If counts go too low, the prescribed drug is usually stopped briefly or the dosage is reduced. When infections occur in lupus, they are more often related to alterations in the body's immune system that are not reflected in routine blood counts.

Thrombosis:
The body's blood is normally in a liquid state. When a person is injured or has surgery, blood thickens and plugs up the spot that is bleeding in a process called hemostasis, also known as coagulation or clotting. Hemostasis is a normal, vital function of the body.

Sometimes in lupus, however, the processes of hemostasis are too strong, and a blood clot forms where it is not needed -- or wanted. This condition is called thrombosis. It may be said that the difference between hemostasis and thrombosis is that the latter is too much of a good thing. If a thrombus, or clot, breaks off and travels elsewhere in the circulation, it is called embolus.

Most thrombosis in lupus is associated with antibodies in the blood called antiphospholipid antibodies. The two blood tests most often used to detect antiphospholipids are the anticardiolipin test and the lupus anticoagulant test. (The lupus anticoagulant has a paradoxical name, since it is not really an anticoagulant in the body -- it just looks like one in the laboratory.)

Diagnosis and treatment: The best treatment is anticoagulation (blood thinning) medication, such as warfarin (Coumadin and generics). Warfarin cannot safely be used during pregnancy because of a risk of birth defects in the middle of the first trimester, and a risk of fetal bleeding in the third trimester. Thus a woman who takes warfarin must switch to the injectable anticoagulant heparin or low molecular weight heparin as soon as she is pregnant. These are safe for the fetus.

Blood Transfusion:
Because blood transfusions (including red blood cells, platelets, and plasma) are not absolutely safe, and because multiple units may be required in some cases, transfusion is reserved for times when the risk of not transfusing would be significant, and there isn't enough time for the patient to produce enough of his or her own blood cells or components.

Bone Marrow Testing:
Blood cells are made in the bone marrow, but most blood cell problems in lupus occur after the cells leave the marrow and enter the blood stream. Thus, most hematological questions in lupus can be answered from the results of blood tests alone. Occasionally, however, a bone marrow test provides important information to help in planning treatment.

kNOw Lupus #24

Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.

kNOw Lupus #23

Oral Disease:
The oral mucosa, or lining of the mouth, is one of the most common targets in lupus erythematosus (LE) patients. Internists, rheumatologists, and even dermatologists commonly omit examination of the mucous membrane when taking a patient's medical history and during the physical examination. This medical oversight may certainly delay appropriate medical care for LE patients, as LE mucosal lesions often give clues for a correct diagnosis and prognosis. In this article we try to give a practical yet comprehensive overview of the most common mucosal lesions found in LE.

Specific Mucosal Lesions in LE:

Oral apthae (canker sores):
In the medical literature, oral apthae often are referred to as recurrent apthous stomatitis. These sores, or lesions, affect up to 15 percent of the normal population.
Description: The oral apthae lesions are often small (less than 1 cm), painful, and have a tendency to occur on the buccal mucosae (inner cheeks) of the mouth. The lesions tend to last up to two to three weeks. The main mimicker of apthae is herpes (a.k.a. fever blisters). In herpes, the ulcers often affect the lips and gums. They tend to appear in groups and to be preceded by fluid-filled blisters.

Oral apthae in LE patients tend to last longer, be larger, and appear most often on the hard palate, or roof of the mouth. The most important feature of apthae in LE patients is the strong association of these oral ulcers with an internal organ flare of the systemic lupus disease.

Treatments: The most effective treatment for LE apthae is to control the SLE with a safe and immunosuppressive therapy. This usually is based on the combination of systemic corticosteroids with anti-metabolites, such as azathioprine (Imuran) or mycophenolate mofetil (CellCept) with cyclophosphamide.

Additional treatment may consist of high-potency corticosteroids placed directly upon the skin, such as clobetasol gel (4-5 times a day) or topical tacrolimus ointment (2-3 times a day); or medicines taken by mouth, such as colchicine, 0.6 mg twice a day, Dapsone, 100-150 mg/day, or thalidomide (Thalomid), 100-200 mg/day.

Mucosal discoid lupus erythematosus:
Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. The head and neck are most commonly affected areas. Very few people with DLE have associated systemic LE.
However, certain subsets of people DLE have a stronger relationship to systemic lupus. These are people with:

•disseminated DLE (DLE lesions above and below the neck);
•palmoplantar DLE (DLE lesion on the palms of the hands and soles of the feet);
•milial DLE or familial SLE (first-degree relatives with DLE or SLE);
•mucosal DLE (DLE lesions affecting mouth and rarely, other mucous membranes).

Description: DLE of the oral mucosa occurs only in the setting of cutaneous DLE. The most commonly affected location is the inner cheeks, and often there will be associated lip lesions. Usually these will be asymptomatic (presenting no symptoms), but when ulcerated they become quite painful.

The lesions resemble red plaques surrounded by lacy whitish areas. Mucosal DLE lesions are much like lesions seen in a very common disease called lichen planus. The presence of DLE-associated lesions on the skin and lips should prompt to the exclusion of oral DLE in patients with "lichen planus-like" mouth lesions.

Treatments: Treatment of mucosal DLE should be based on a combination of topical and systemic therapy. Topical therapy consists of high potency corticosteroids (clobetasol gel 4-5 times a day), with or without topical tacrolimus ointment (2-3 times a day). Thalidomide 100-200 mg daily, with or without hydroxychloroquine (Plaquenil) 200 mg twice daily, is often highly effective for oral DLE.
Rare severe cases may require systemic immunosuppressive drugs such as azathioprine. mycophenolate mofetil, or leflunomide (Arava).

Bullous SLE:
This is a serious (fortunately, rare) disease in which individuals have antibodies against their own mouth and skin. These autoantibodies react against type VII collagen, a molecule found in the basement membrane zone. The basement membrane zone is an area where the outer layer of the skin (epidermis) and mouth (epithelium) are separated from the inner layer of skin (dermis) and mouth (submucosae).

Skin or mucosal biopsy and the evaluation of tissue-bound and circulating anti-type VII antibodies in the blood are the diagnostic procedures.

Description: Affected individuals generally have skin lesions consisting of grouped blisters, especially on the head and neck. The arms and legs also may be involved. Half of these individuals have extensive superficial erosions affecting the mouth, esophagus, larynx, trachea, genitalia, and eyes.

Treatments: Effective treatment consists of a combination of systemic corticosteroids and immunosuppressive therapy with agents such as azathioprine and/or mycophenolate mofetil. Severe cases or cases affecting the esophagus (food pipe), laryngotrachea (air pipe) mucosa or the eyes will require treatment with cyclophosphamide.

kNOw Lupus #22

Of the 23 percent of people with lupus who experience severe lupus flares, all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days.