Tuesday, February 21, 2012

Lupus and organ involvement

The heart and lungs are affected frequently in SLE sufferers, it is very important to have any symptoms checked by the proper medical specialists that could mean organ involvement.  Early, proper treatment in major organ involvement is extremely important.

Cardiopulmonary Disease

The heart and lungs are frequently affected in people with systemic lupus erythematosus (SLE). Complications in these organs can cause a variety of problems, ranging from mild to serious or even life-threatening. These complications are known as cardiopulmonary (cardio = heart; pulmonary = lung).
It is very important to know the differences between cardiopulmonary complications and non-lupus related problems. The medical examination and laboratory and other tests will help to determine the cause of the problem so appropriate therapy can be used.

Types of Heart or Lung Involvement in Lupus

When investigating a person with cardiopulmonary symptoms, a number of possible causes must be considered. Some problems that can occur in SLE are:
  • Pericarditis: inflammation of the lining of the heart
  • Myocarditis: inflammation of the tissue of the heart
  • Coronary vasculitis: inflammation of blood vessels in the heart
  • Pleuritis: inflammation of the sac around the lung
  • Pneumonitis: inflammation of the lung
  • Pulmonary emboli: blood clots in the lung

Other possible cardiopulmonary problems

Heart and lung problems that are not necessarily lupus-related include:
  • Infectious pneumonia: inflammation of the lung due to an infection
  • Esophageal spasm: spasm of the section of the digestive tract leading from the mouth to the stomach
  • Reflux esophagitis: inflammation of the esophagus due to backflow of contents of the stomach into the esophagus
  • Costochondritis: inflammation of the cartilage of the ribs, usually around the breast bone

Cardiac (Heart) Involvement

Lupus can involve all parts of the heart:
  • Pericardium: sac surrounding the heart
  • Myocardium: muscle layer of the heart
  • Endocardium: lining of the inside of the heart
  • Coronary arteries that take blood to the heart


Pericarditis, or inflammation of the sac around the heart, is the most common heart involvement in people with lupus. This condition occurs when antigen-antibody complexes-also known as immune complexes-are made during active lupus and cause inflammation within the pericardium.
Symptoms of pericarditis
  • Sharp chest pain that can change with changes in the body's position and frequently may be relieved by leaning forward slightly; this chest pain may feel like a heart attack
  • Occasionally, shortness of breath
  • In some cases of pericarditis, individuals may not experience physical symptoms.
Diagnosing pericarditis
Pericarditis can occur in conditions other than lupus, therefore the cause must be determined before treatment begins. To help diagnose pericarditis, these tests may be ordered:
  • blood tests
  • chest x-rays
  • electrocardiogram (EKG)
  • echocardiogram (ultrasound of the heart) can tell if there is fluid around the heart
Treating pericarditis
  • Lupus pericarditis can be treated with anti-inflammatory drugs.
  • If anti-inflammatory drug therapy is unsuccessful, a brief course of corticosteroid treatment is usually needed.
  • If pericarditis is due to infection or kidney failure, the treatment is different than if it is due to lupus.


When lupus causes inflammation of the tissue of the heart, myocarditis occurs. However, serious heart muscle disease is not common in SLE.
Symptoms of myocarditis
  • unexplained rapid heart beat
  • irregular heart beat
  • abnormal electrocardiogram
  • heart failure.

Diagnosing myocarditis
Myocarditis is often seen with inflammation of other muscles in the body, and this condition can lead to tissue damage that replaces heart tissue with scar tissue.
Treating myocarditis
Treatment usually includes corticosteroids such as prednisone. Immunosuppressive drugs such as Cytoxan (cyclophosphamide) and Imuran (azathioprine) may be added if the inflammation is not completely controlled with corticosteroids.


When lupus causes inflammation of the lining of the inside of the heart, endocarditis occurs.
Symptoms of endocarditis
  • Although the heart valves can be damaged, this condition rarely affects the pumping efficiency of the heart.
  • The surface of the valves can thicken or develop wart-like growths called Libman-Sacks lesions.
    • Although these growths may cause heart murmurs, it is uncommon for them to seriously affect the function of the valves.
    • However, if bacteria lodge in the growths, infection can occur. This condition is called bacterial endocarditis and can cause scarring of the affected tissue.
    • Although also uncommon, bacterial endocarditis is potentially very serious and requires hospitalization.
  • The inflammation and scarring of valves rarely leads to a deformity requiring valve replacement.
Coronary artery disease
The coronary arteries deliver blood and oxygen to the heart muscle and are vital to the heart's pumping function. In people with lupus, these arteries can become prematurely narrowed, causing coronary artery disease.
Studies suggest that people with lupus are more likely to develop premature atherosclerosis if they are on corticosteroids (prednisone) or have kidney involvement.
This blockage can be due to:
  • inflammation of the artery wall (arteritis)
  • cholesterol deposits inside the wall (atherosclerosis)
  • arterial spasm
  • blood clot (thrombus)
Symptoms of coronary artery disease
  • Narrowing or blockage of an artery can lead to chest pain and a heart attack.
  • Atherosclerosis is the most common cause of coronary artery disease in lupus.
In addition, heart damage can develop from inflammation in active lupus or from medications.
Diagnosing coronary artery disease
Early and accurate diagnosis, combined with aggressive therapy to reduce organ damage, is crucial in order to minimize permanent heart damage. Typical tests include:
  • chest x-ray
  • electrocardiogram
  • echocardiogram
  • blood tests to evaluate lupus activity.
Treating coronary artery disease
Treatment of cardiac problems must be individualized for each person and for each problem. However, prevention is the primary treatment of coronary artery disease.
These are three important factors in preventing heart attacks in people with lupus:
  1. Controlling cardiac risk factors
  2. Controlling lupus disease activity
  3. Carefully monitoring corticosteroid use.

Pulmonary (Lung) Involvement

The wide range of pulmonary manifestations (symptoms) associated with lupus needs prompt evaluation and close monitoring.
Diagnostic tools can include:
  1. chest x-ray
  2. ventilation-perfusion scan of the lung
  3. gallium scan
  4. high-resolution CT scan
  5. bronchoalveolar lavage
  6. pulmonary function tests.
While lupus can affect the lungs in many ways, pleuritis (pleurisy) is the most common pulmonary manifestation.
The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis.
Symptoms of pleuritis
  • severe, often sharp, stabbing pain that may be pinpointed to a specific area or areas of the chest.
  • sometimes the pain is made worse by taking a deep breath, coughing, sneezing, or laughing.
Pleural effusion
Sometimes an excessive amount of fluid builds up in the pleural space between the lung and the chest wall. This is called a pleural effusion and occurs less often then pleuritis.
Diagnosing pleural effusion
If the effusion is large enough, it can be seen on a chest x-ray. Since infection or conditions other than lupus can cause pleural effusions, the physician may need to take a sample of the fluid and perform tests to help determine its cause.
Treating pleural effusion
Pleural effusions will usually respond to these medications:
  • analgesics
  • non-steroidal anti-inflammatory drugs (NSAIDs)
  • corticosteroids.
Pleural effusions also may clear by themselves with time.
Lupus pneumonitis
Pneumonitis is inflammation within the lung tissue. Infection is the most common cause of pneumonitis in people with lupus. Bacteria, virus, or fungi are organisms that can cause infection in the lung. Sometimes pneumonitis may occur without infection and is then called non-infectious pneumonitis.

Symptoms of pneumonitis
  • fever
  • chest pain
  • shortness of breath
  • cough.
Diagnosing pneumonitis
Since both forms of pneumonitis have the same symptoms, the patient is assumed to have an infection until proven otherwise. The diagnosis of pneumonitis requires:
  • blood tests
  • sputum (mucus coughed up from the lungs) tests
  • x-rays
To determine if infection is the cause of the pneumonitis the physician may also need to perform:
  • a bronchoscopy (a visual inspection of the inside of the lungs)
  • a lung biopsy (examination of a tissue sample).
Treating pneumonitis
Treatment initially includes a course of antibiotics. If laboratory and other diagnostic tests show no proof of infection, then the diagnosis is likely lupus pneumonitis.
This non-infectious pneumonitis is treated with high doses of corticosteroids. Immunosuppressive drugs such as Imuran (azathioprine) may be added if the inflammation is not controlled with corticosteroids.
Chronic diffuse interstitial lung disease
Chronic diffuse (widespread) interstitial lung disease is relatively uncommon in people with SLE. Chronic interstitial lung disease scars the lung. This scarred tissue acts as a barrier to the oxygen that normally moves easily from the lung into the blood.
Besides lupus, there are other reasons for this condition. Correct identification of the cause is necessary in order to chose the proper treatment.
Symptoms of chronic diffuse interstitial lung disease
  • gradual onset of a chronic, dry cough
  • pleuritic-like chest pains
  • difficulty breathing during physical activity.
Diagnosing chronic diffuse interstitial lung disease
To determine the cause, special procedures are required, such as:
  • bronchoscopy
  • bronchoalveolar lavage
  • lung biopsy.
Treating chronic diffuse interstitial lung disease
Chronic lupus interstitial lung disease is primarily treated with corticosteroids, with varying results. In general, the lung function can be stabilized with treatment.
The progression of chronic interstitial lung disease can be measured with several tests that assess disease activity and the person's response to therapy. These include:
  • the pulmonary function test to assess the ability of the lungs to receive, hold, and use air
  • the oxygen saturation test to measure how readily oxygen moves through the lung and into the blood stream; oxygen saturation is usually reduced in chronic interstitial lung disease
  • high-resolution CT scans to look at the lung and chest structures. Pulmonary hypertension
    Occasionally, people with lupus develop pulmonary hypertension or high blood pressure in the blood vessels within the lung. If severe, this can be life-threatening, and there tends to be little chance for improvement.
    Treating pulmonary hypertension
    There is no uniformly successful medical treatment for pulmonary hypertension. Heart-lung transplants may be an option for some people with pulmonary hypertension caused by SLE.
    Pulmonary emboli
    Pulmonary emboli are blood clots that block the pulmonary arteries.
    Symptoms of pulmonary emboli
    • At first, the clots cause pleuritic (lung) pain and shortness of breath.
    • These clots can lead to abnormal oxygen exchange in the lung and even death.
    Diagnosing pulmonary emboli
    • ventilation-perfusion (breathing and blood flow) scans of the lung
    • angiography (dye injected into an artery)
    • an evaluation for thrombophlebitis (inflammation of a vein due to a blood clot)
    Risk factors in lupus for pulmonary emboli
    • antiphospholipid antibodies
    • decreased blood levels of protein S
    • possible vascular damage
    • prolonged bed rest.
    Pulmonary hemorrhage
    Pulmonary hemorrhage, or bleeding into the lung, is a rare but potentially fatal complication of SLE.
    Symptoms of pulmonary hemorrhage
    • fevers
    • shortness of breath
    • a cough
    • blood-tinged sputum.
    Diagnosing pulmonary hemorrhage
    These symptoms are usually seen in the setting of multi-organ system involvement from SLE and a rapidly falling red blood count.

    Treating pulmonary hemorrhage
    Treatment usually includes high-dose corticosteroids with immunosuppressive agents. Aggressive supportive care is also crucial to maximize chance for recovery.
    The broad array of cardiopulmonary problems associated with SLE requires a close working relationship between patient and physician. Preventive measures to reduce the number of flares and rapid evaluation of new or changing symptoms is crucial to minimize long-term problems. Treatment is always individualized to the type of heart and/or lung involvement. Ongoing medical supervision is essential to optimize therapy and prevent long-term side effects.

Lupus Foundation of America, Inc.

Tests and diagnosis

I want to add that a fellow lupie that has had complications of pulmonary embolism was diagnosed via a CT scan with contrast.

By Mayo Clinic staff Pulmonary embolism can be difficult to diagnose, especially in people who have underlying heart or lung disease. For that reason, your doctor will likely order a series of tests to help find the cause of your symptoms, including:
  • Chest X-ray. This noninvasive test shows images of your heart and lungs on film. Although X-rays can't diagnose pulmonary embolism and may even appear normal when pulmonary embolism exists, they can rule out conditions that mimic the disease. 
  • Lung scan. This test, called a ventilation-perfusion scan (V/Q scan), uses small amounts of radioactive material to study airflow (ventilation) and blood flow (perfusion) in your lungs. First, you inhale a small amount of radioactive material while a special camera designed to detect radioactive substances records air movement in your lungs. Then a small amount of radioactive material is injected into a vein in your arm. Images taken after the injection show whether you have a normal or diminished flow of blood to your lungs. This test is less reliable if you're a smoker.
  • Spiral (helical) computerized tomography (CT) scan. Regular CT scans take X-rays from many different angles and then combine them to form images showing 2-D "slices" of your internal structures. In a spiral or helical CT scan, the scanner rotates around your body in a spiral — like the stripe on a candy cane — to create 3-D images. This type of CT can detect abnormalities with much greater precision, and it's also much faster than are conventional CT scans. For a possible pulmonary embolism, often an intravenous injection of contrast material is given and the spiral CT is done immediately.
  • Pulmonary angiogram. During this test, a flexible tube (catheter) is inserted into a large vein — usually in your groin — and threaded through your heart's right atrium and ventricle and then into the pulmonary arteries. A special dye is injected into the catheter, and X-rays are taken as the dye travels along the arteries in your lungs. Pulmonary angiogiography also can measure the pressure in the right side of your heart. It would be unusual to have normal readings in the presence of pulmonary embolism. This test requires a high degree of skill to administer and carries potentially serious risks, so it's usually performed when other tests fail to provide a definitive diagnosis.
  • D-dimer blood test. Having high levels of the clot-dissolving substance D dimer in your blood may suggest an increased likelihood of blood clots, although D-dimer levels may be elevated by other factors, including recent surgery.
  • Ultrasound. A noninvasive sonar test known as duplex venous ultrasonography (sometimes called duplex scan or compression ultrasonography) uses high-frequency sound waves to check for blood clots in your thigh veins. In this test, your doctor uses a wand-shaped device called a transducer to direct the sound waves to the veins being tested. These waves are then reflected back to the transducer and translated into a moving image by a computer. An echocardiogram of the heart can estimate the blood pressure in the right side of the heart.
  • Magnetic resonance imaging (MRI). MRI scans use radio waves and a powerful magnetic field to produce detailed images of internal structures. Because MRI is expensive, it's usually reserved for pregnant women, to minimize radiation exposure to the developing baby, and people whose kidneys may be harmed by contrast dyes used in CT and pulmonary angiogram.

  • Immunosuppressive Medications

    Azathioprine (Imuran)
    Mycophenolate mofetil (Cellcept)
    Cyclosporine (Neoral, Sandimmune, Gengraf)
    Methotrexate (Rheumatrex)
    Leflunomide (Arava)
    Cyclophosphamide (Cytoxan)
    Chlorambucil (Leukeran)
    Nitrogen mustard (Mustargen)

    What are immunosuppressive medications?

    Immunosuppressives are medications that help suppress the immune system. Many were originally used in patients who received organ transplants to help prevent their bodies from rejecting the transplanted organ. However, these drugs are now also used for the treatment of certain autoimmune diseases, such as lupus and rheumatoid arthritis. In people with lupus, the immune system mistakenly attacks the body’s own tissues. Most immunosuppressives work to downregulate (suppress) this attack by interfering with the synthesis of DNA, the material in your cells that contains the blueprints for all of your genetic information. In doing this, these medications prevent the cells of your immune system from dividing. When cells cannot divide correctly, they will eventually die. The immunosuppressives prescribed most commonly for the treatment of lupus are azathioprine (Imuran), mycophenolate (Cellcept), and cyclosporine (Neoral, Sandimmune, Gengraf).
    Immunosuppressive medications are used to control more serious lupus activity that affects major organs, including the kidney, brain, cardiovascular system, and lungs. Before prescribing an immunosuppressive medication, your doctor may perform a biopsy of the kidney or affected organ system to evaluate the most effective course of treatment. Sometimes immunosuppressive medications are given in addition to or instead of steroid therapy to lower the dose of steroids needed and thus spare some of the undesirable side effects of steroid therapy. For this reason, these drugs are sometimes called “steroid-sparing” medications or “adjuvant” (helping) drugs. Steroid-sparing drugs usually have a two-fold benefit, since they often reduce or eliminate the need for steroids while also improving lupus symptoms.
    Because immunosuppressive drugs put down the immune system, people taking them are at an increased risk for infection. Try to stay away from people who have colds or other illnesses, and make sure to wash your hands regularly and maintain good personal hygiene. If you are also taking steroid medications, you may not realize that you are ill because the steroid may suppress your fever symptoms. Contact your doctor immediately at the first sign of any infection or illness.
    In addition, immunosuppressive medications are known to increase the risk of cancer development later in life. However, lupus itself is also known to increase the risk of cancer, so by controlling your lupus now and preventing it from doing further damage to your body, immunosuppressive therapy may actually decrease your risk of developing cancer. Either way, it is very important to control your lupus activity now to prevent other potentially life-threatening complications.

    Types of Immunosuppressive Medications

    Azathioprine (Imuran)
    Imuran is an anti-inflammatory immunosuppressive that can decrease joint damage and disability in people with lupus, rheumatoid arthritis, and other conditions. In addition, Imuran has proven to clearly improve lupus affecting the liver and kidneys. Imuran is “steroid-sparing,” which means that it may allow for a reduction of the amount of steroid being taken. Since the side effects of steroids generally increase with the dosage, this medication generally promotes a reduction in steroid side effects as well.
    People with lupus have overactive immune systems. Imuran works by preventing some of the cells involved in this immune response (specifically, white blood cells [WBCs], or leukocytes) from spreading. Imuran is a “slow onset” drug, which means it may take 6-12 weeks for you to notice its effects. It usually comes in pill form and has fewer side effects than many other immunosuppressive medications. The most common and serious side effects involve the stomach and blood cells. Nausea and vomiting can occur, sometimes with stomach pain and diarrhea. Taking the medication with food may help to reduce these symptoms. Imuran can also decrease the number of certain cells in your blood. For this reason, blood tests should be done regularly to determine your white blood cell, platelet, and red blood cell count.
    Less common side effects include liver test abnormalities, hepatitis (inflammation of the liver), pancreatitis (inflammation of the pancreas, a gland behind the stomach, that can cause abdominal pain), or an allergic reaction that can seem like the flu. During treatment, your doctor may perform tests for breakdown products (metabolites) of Imuran that can help monitor how your body is reacting to the drug.
    Even though Imuran is effective in treating serious lupus symptoms, long term use of this medication does increase the risk of developing cancer. Your doctor can speak with you about this risk and any other concerns you may have. She/he will work with you to minimize the side effects of your medications while also maximizing the benefits.
    In addition to having regular blood tests (CBCs), you should notify your doctor if you experience any of the following symptoms while taking Imuran: fever, a new rash, easy bruising or bleeding, or signs of infection. Be sure to speak with your doctor before taking getting any vaccines or having surgery. In addition, consult your doctor if you are pregnant, may become pregnant, or are breastfeeding, since Imuran can be harmful to your child.
    Certain medications may interfere with Imuran, so be sure to notify your doctor of any other drugs you are taking. Medications that can interfere with Imuran include the gout medication allopurinol (Aloprim, Zyloprim), warfarin (Coumadin), some blood pressure medications including some ACE inhibitors (Accupril or Vasotec), olsalazine (Dipentum), mesalamine (Asacol, Pentasa), and sulfasalazine* (Azulfidine).

    Mycophenolate mofetil (Cellcept)
    Cellcept is an immunosuppressant used especially for lupus patients with signs of kidney disease. It works by targeting an enzyme in the body—a protein responsible for certain chemical reactions—that is important in the formation of DNA in your cells. In doing so, Cellcept impairs your immune system function as well. Usually Cellcept is given twice a day for a total dose of about 2000-3000 milligrams (mg) per day, but this dosage may be reduced. Like Imuran, Cellcept is steroid-sparing, so it may allow you and your doctor to reduce your dosage of steroid medications and thus also reduce their side effects.
    Cellcept may cause some side effects. The most common effects include stomachache, nausea, vomiting, and/or diarrhea. Headache, dizziness, sleeplessness, and tremors (involuntary muscle movements) may also occur. Skin rashes can arise but are less common. Since lupus can also cause skin rashes, it may be difficult to determine whether a rash is from your medication or your lupus. You should speak with your doctor upon detecting any new rashes or symptoms.
    Cellcept may also cause a reduction in the number of certain cells in your blood. A reduction in your white blood cell count could increase your chance of infection. As with other immunosuppressive medications, it is important that you try to avoid infection and notify your doctor at the first sign of illness. In addition, a reduction in red blood cells caused by Cellcept may lead to anemia, which could make you tired or lead to easy bruising. Cellcept can also reduce the number of platelets in your blood, which may also cause easy bruising or gastrointestinal bleeding (bleeding anywhere along the pathway that food travels in the body). Obtaining periodic blood tests while taking Cellcept can help you and your doctor to detect and correct these problems. Blood tests should be performed frequently during the first several months of taking this medication and less often as more time passes.
    People over 65 and those that have experienced ulcers or other gastrointestinal disorders should speak to their doctors before taking Cellcept. People in these groups may experience an increased risk of side effects. In addition, there may be an increased risk of developing cancer such as lymphoma and skin cancer when taking immunosuppressives such as Cellcept. You should discuss this with your doctor before beginning this medication. It is important to realize, however, that Cellcept may be the best way to control the kidney disease associated with lupus, and that lupus too can cause cancer. Thus, prescribing Cellcept for your kidney involvement is not meant to introduce new risk factors, but rather to treat the seriousness of your condition at this moment in time.
    In addition, be sure to wear sunscreen when going outside and avoid prolonged sun exposure—even if you are not taking immunosuppressive medications—since sunlight can also aggravate your lupus symptoms.
    If you are pregnant, may become pregnant, or are breast-feeding, your doctor will strongly recommend that you stop taking Cellcept due to the risk of birth defects. In addition, even though it is not known whether Cellcept decreases the effectiveness of oral contraceptives, it may be able to reduce their concentration in the blood, so other forms of birth control are advised. Antacids can also interfere with your body’s absorption of Cellcept. If you need to take an antacid, do so at least one hour before or at least two hours after taking Cellcept. As with other immunosuppressive medications, you should speak to your doctor before getting any vaccines or having any sort of surgery.
    Certain drugs may interact or interfere with the effectiveness of Cellcept. These medications include: cholestercholestyramine (Questran), acyclovir (Zovirax), gancyclovir (Cytovene), azathioprine (Imuran), antacids containing magnesium or aluminum hydroxide (such as Maalox, Rolaids, or Mylanta), oral contraceptives, trimethoprim/sulfamethoxazole (Bactrim),* theophylline (Theo-Dur), phenytoin (Dilantin), probenecid (Benemid), or aspirin and other salicylates.
    Be sure to notify your doctor immediately if you experience easy bruising or bleeding, persistent or bloody diarrhea, trouble breathing, fever, or any sign of infection.
    Recently, the FDA issued an alert regarding a possible relationship between Cellcept and a serious neurological disease called multifocal leukoencephalopathy (PML). A similar warning was issued regarding the drug rituximab (Rituxan) in late 2006. PML is an extremely rare but fatal disease, but it is important to understand that Cellcept and rituximab are not unique in their linkage to PML. PML is associated with conditions of severe immune deficiency, such as AIDS, cancer, lupus, and the immunosuppression that can be involved in the treatment of those conditions. Although immunosuppressive medications are effective in the treatment of lupus, your doctor can discuss with you the risk of this possible relationship and the use of the immunosuppressive medications involved in your advised treatment.

    Cyclosporine (Neoral, Sandimmune, Gengraf)
    Cyclosporine is a more potent immunosuppressive medication that works by blocking the function of cells in your immune system called T-lymphocytes, or “T-cells.” Like other immunosuppressives, it was originally used to prevent the immune systems of patients with transplanted kidneys from rejecting the transplanted organs. It is now also prescribed for people who suffer from inflammation of the kidney caused by lupus, otherwise known as lupus nephritis. However, cyclosporine can be toxic to the kidneys, so use of this medication is usually reserved for cases in which a person’s lupus does not respond to other immunosuppressive medications like Cellcept. Cyclosporine is also prescribed for people with severe psoriasis, a skin condition that can also cause pain and swelling of the joints, and it can be helpful in reducing some of the pain, swelling, and stiffness associated with lupus arthritis.
    The starting dose of cyclosporine depends on your body weight (usually 2.5 milligrams [mg] per kilogram [kg] per day). The dose is then increased depending on how well the medication works for you and how well your body tolerates the drug. Cyclosporine comes in 25 and 100 mg tablets, and patients usually end up taking 75 or 100 mg per day. You may notice some reduction in pain and swelling after about a week of taking the medication, but its full effects are usually not felt for about 3 months.
    Cyclosporine can cause some side effects. About 25% of people taking cyclosporine develop high blood pressure (hypertension). In addition, because cyclosporine can be tough on the kidneys, it can cause a substance called uric acid to build up in the blood (a state known as hyperuricemia). Sometimes this buildup of uric acid can cause gout, a condition that causes intense swelling in one of the joints, often the the big toe. If you already have gout, your condition may worsen while taking cyclosporine. Fortunately, many of these side effects go away as treatment with cyclosporine is reduced or stopped, so your doctor can work with you to adjust your dosage if you begin to experience these problems.
    Other common side effects include headaches, stomach pain (including dyspepsia, a gnawing or burning pain in the pit of your stomach accompanied by bloating), vomiting, diarrhea, and swelling in your hands or feet. Less common side effects include tremors (unintentional muscle movements), increased hair growth, muscle cramps, and numbness or tingling in your hands and feet (a condition known as neuropathy). Some people may also experience swelling of the gums while taking cyclosporine. Be sure to brush and floss regularly; this routine may alleviate some of this swelling.
    Cyclosporine may increase your risk of developing certain types of cancer, including skin cancer. For this reason, you should coordinate regular skin exams with your doctor. In addition, try to stay out of the sun and make sure to wear sunscreen when you do go outside.
    Do not eat grapefruit or drink grapefruit juice while taking cyclosporine. Grapefruit increases the amount of cyclosporine that is absorbed by your body.
    Like other immunosuppressive medications, cyclosporine increases your risk of infection, so make sure to wash your hands and stay away from people who may be sick. Notify your doctor at the first sign of any illness. In addition, tell your doctor if you plan to have any vaccines or surgeries, since both can pose risks for people taking immunosuppressive medications.
    Cyclosporine can cause serious complications during pregnancy such premature labor and high blood pressure and fluid retention in your baby, so you should not take cyclosporine if you are pregnant or may become pregnant. Also, do not take cyclosporine while breast-feeding, since it can be passed to your baby through breast milk.
    Cyclosporine interacts with certain drugs, so be sure to notify your doctor of any medications you may be taking, including prescription and over-the-counter drugs, supplements, and vitamins. Drugs that may interfere or interact with cyclosporine include:

    • Heart and blood pressure medications: diltiazem (Cardizem, Tiazac), nicardipine (Cardene), verapamil (Calan, Covera-HS, Isoptin, Verelan), “potassium sparing diuretics” amiloride (Midamor), spironolactone (Aldactone) and triamterene (Dyrenium)
    • Cholesterol lowering medications: lovastatin (Mevacor) and simvastatin (Zocor)
    • Antibiotics and antifungals: clarithromycin (Biaxin), erythromycin, naficillin, fluconazole (Diflucan), intraconazole (Sporanox), ketoconazole (Nizoral), and rifampin (Rifadin, Rimactane)
    • Anti-seizure (anti-epileptic) medications: carbamazepine (Tegretol), phenobarbital (Solfoton), and phenytoin (Dilantin)
    • Antidepressants: nefazadone (Serzone) and the selective serotonin reuptake inhibitors (SSRIs) such as paroxitine (Paxil), fluoxetine (Prozac), and sertraline (Zoloft)
    • Human immunodeficiency virus (HIV) protease inhibitors: indinivir (Crixivan), saquinavir (Fortovase, Invirase), ritonavir (Norvir), and nelfinavir (Viracept)
    • Others: allopurinol (Lopurin, Zyloprim), bromocryptine (Parlodel), androgens (male hormones), estrogens (female hormones), danazol (Danocrine), metoclopramide (Reglan), methylprednisolone, octreotide, ticlopidine (Ticlid), cimetidine (Tagamet), methoxsalen (Oxsoralen), coal tar (Balnetar, Zetar), trioxsalen (Trisoralen)
    Be sure to tell your doctor if you are taking any of these medications.

    Disease-Modifying Antirheumatic Drugs (DMARDs)

    Methotrexate (Rheumatrex)
    Leflunomide (Arava)
    Disease-modifying antirheumatic drugs, better known as “DMARDs,” are immunosuppressive medications that are used to treat the pain and swelling of the arthritis that can accompany lupus. DMARDs not only reduce this pain and swelling, but they may also be able to decrease long term damage to your joints.

    Methotrexate (Rheumatrex)
    Methotrexate is one of the most commonly used drugs for the treatment of rheumatoid arthritis, and it is used in lupus patients to alleviate the joint pain and swelling of polyarthritis (arthritis involving multiple joints). It is only mildly effective for more severe lupus symptoms involving the kidneys and other organs and should be used carefully in people with these conditions. Historically, methotrexate has been used to treat cancer and psoriasis, a skin condition that can also affect the joints. However, in the late 1980s, the medication was approved by the FDA for the treatment of arthritis and has been used commonly for this ever since. Methotrexate works by interfering with the production of folic acid, which is a building block for growing cells in your body. As a result, methotrexate hinders the growth of certain cells, including those of the immune system. This medication is also steroid-sparing, meaning it can be used in conjunction with steroids to lower the dose of steroid therapy and thus also lower the associated side effects.
    The medication is usually taken as a tablet in doses of 7.5 to 25 milligrams (mg) per week, but it can also be given as an injection. People taking methotrexate usually feel improvements in 3-6 weeks, but it can take up to 3 months to feel the full benefit of the drug. Be sure to take this medication as directed. If you miss a dose, you can usually take the medication up to 4 or 5 days after. However, if you miss this window, contact your doctor regarding how you should proceed.
    Most people taking methotrexate do not experience side effects and many of the more minor side effects will decrease with time. However, the likelihood of these side effects does increase as your dosage goes up. Many of the side effects of methotrexate involve the fact that the medication works by interfering with the production of folic acid in your body. Therefore, your doctor will most likely recommend that you take folate supplements, which will prevent many of these side effects, including mouth sores (stomatitis). Other side effects may include nausea, vomiting, and an increased risk for abnormal liver function tests. Because of the danger to your liver, you should not drink alcohol while taking methotrexate; drinking while on this medication can cause irreversible damage to your liver. In addition, it is important that people taking methotrexate have normal liver function tests. Be sure to tell your doctor if you have a history of liver disease. In addition, lung problems, such as a continuing cough or shortness of breath, can occur while taking this medication but are more common in people with preexisting lung conditions. Talk to you doctor if you experience these symptoms.
    Some patients experience gradual hair loss (alopecia), but hair usually grows back once you stop taking methotrexate. In addition, methotrexate can increase your sensitivity to sunlight. Since many lupus patients already experience sun sensitivity, try to limit sun exposure and be sure to wear sunscreen when going outdoors.
    It is important to remember that sometimes the side effects of this medication can go unnoticed; sometimes people may have abnormal blood tests while feeling no side effects at all, so it is important to have blood tests (complete blood counts, or “CBCs”) performed every 2-3 months while taking methotrexate.
    If you are pregnant, may become pregnant, or are breastfeeding, you should not take this medication because it can cause serious birth defects and complications during pregnancy. Women taking this medication should use an effective method of birth control. Speak to your doctor about any pregnancy plans or concerns.
    As with other drugs that may suppress your immune system, talk to your doctor about any vaccines or surgeries you may have. In addition, be sure to notify him/her of any other medications, both prescription and over-the-counter, that you may be taking. Methotrexate can interact with certain drugs, including the antibiotic trimethoprim (Bactrim)* and NSAIDs such as ibuprofen (Advil, Motrin) and celecoxib (Celebrex). Do remember, though, that sometimes methotrexate may be used in combination with certain NSAIDs to treat lupus. Your doctor will work with you to determine which treatments will work best to treat your lupus symptoms with the fewest side effects.

    Leflunomide (Arava)
    Leflunomide is another DMARD used to treat the swelling, pain, and stiffness that many lupus patients feel due to arthritis. It can either be prescribed alone or in combination with other treatments, such as methotrexate; often leflunomide is prescribed for patients who do not respond well to methotrexate. Leflunomide works by blocking the formation of DNA in the cells of your body, including those of the immune system. In hindering the formation of DNA, leflunomide stops the body from producing the overactive immune cells that are responsible for the swelling, stiffness, and pain in your joints.
    Leflunomide is usually taken in tablets of 10 or 20 milligrams (mg) once a day. 6-12 weeks may pass before you feel the full benefits of this medication, although your joint pain and stiffness will probably start to improve after just a few weeks. It takes some time for the medication to build up in your body, so some doctors may prescribe something called a “loading dose” when you first begin to take leflunomide. A loading dose is a large dose—about 100 mg—usually given once a week for three weeks in addition to your regular dose. Alternatively, some doctors may give this loading dose over the first three days. This technique, however, usually increases the chance that the person will develop side effects, including diarrhea. The good news is that the diarrhea usually goes away once the loading dose is stopped.
    Leflunomide does have several side effects. The most common side effect is diarrhea, which affects about 1 in 5 people, but this symptom usually goes away with time. In addition, your doctor can talk with you about taking an anti-diarrheal medication to curb some of this discomfort. If the diarrhea persists, she/he may lower your dosage.
    Other side effects include nausea, indigestion, rash, or hair loss (alopecia), but these effects are less common. In addition, about 1 in 10 patients taking leflunomide have abnormal liver function tests or decreased blood cell counts, so individuals taking this medication should have liver enzyme and blood count tests done regularly every 3-4 months. Because of this risk to your liver, you should not drink alcohol while taking leflunomide, and you should tell your doctor if you have had liver problems in the past.
    Women who are pregnant, may become pregnant, or are breastfeeding should speak with their doctor before taking leflunomide, since this medication can cause serious birth defects and complications. In addition, women should use an effective method of birth control while taking leflunomide and continue to do so until two years after leflunomide is stopped, since the medication is known to remain in your body well after you actually stop taking it. Men who want to have children should also talk to their doctor about stopping the medication. Anyone who is on the medication and would like to have children should speak to their doctor about a medication called cholestyramine (Questran), which can help eliminate leflunomide from your body.
    As with other drugs that suppress your immune system, speak with your doctor about any vaccinations or surgeries you plan to have and any other medications you may be taking, including prescription drugs, over-the-counter medications, vitamins, and supplements. Medications that can interact with leflunomide include cholestyramine (Questran), tolbutamide (Orinase), and rifampin (Rifadin, Rimactane), so be sure to tell your doctor if you are on these medications.

    Cytotoxic Drugs

    Cyclophosphamide (Cytoxan)
    Chlorambucil (Leukeran)
    Nitrogen mustard (Mustargen)
    Cytotoxic medications are a class of immunosuppressives that were originally developed (and are still used) to treat certain types of cancer. The cytotoxic drugs usually prescribed to treat lupus symptoms are classified as alkylating agents and are reserved for patients with more serious forms of lupus that involve organs such as the kidneys, central nervous system, lungs, and blood vessels. Cytotoxic medications work against the cells of your immune system that make antibodies (immunoglobulins). Usually, these molecules help the body to ward of infections and other invaders. However, with lupus, these antibodies actually work against your own body and are produced at a rapid rate. Cytoxic drugs fight the rapidly dividing cells of the immune system, but in doing so, they also work against other rapidly dividing cells in your body, including blood cells, hair cells, and sex cells. As a result, cytotoxic medications can have serious long term side effects. Even though cytotoxics have proven to improve the symptoms of kidney, nervous system, lung, and blood vessel disease in lupus patients, it is important for you and your doctor to evaluate the costs and benefits of cytotoxic therapy before beginning this treatment.

    Cytoxan (cyclophosphamide)
    Cytoxan is a cytotoxic medication usually reserved for lupus patients with serious kidney problems who have not responded to other medications. The dosage of Cytoxan varies from person to person. It can be taken in tablet form, but more often it is given intravenously (IV) at the doctor’s office. The IV procedure usually take about 15 to 60 minutes, and a medication may be given before to reduce any nausea you may feel. Doctors usually give Cytoxan once a month for 6 months and then every 2 to 3 months for two years. It may take a few weeks or months for Cytoxan to improve your lupus symptoms.
    The side effects of Cytoxan range from mild to severe and may be worse when the medication is taken in tablet form. Side effects include nausea and vomiting, which can sometimes be prevented with an anti-nausea medication such as ondansetron (Zofran). Hair loss (alopecia) can occur, but hair usually grows back when the medication is stopped. Skin rashes can also occur and be difficult to differentiate from lupus symptoms. Like other medications that suppress your immune system, Cytoxan can increase your risk of infections, especially shingles and certain “opportunistic infections,” infections that do not usually cause disease in healthy individuals. Therefore, it is important that you wash your hands regularly, maintain good personal hygiene, and notify your doctor at the first sign of any infection or fever. Also tell your doctor if you are to have any vaccines or surgeries, since your immune system will be suppressed by Cytoxan.
    More serious side effects include a reduction in white blood cell count, which usually occurs about 8-12 days after starting treatment. Your doctor should perform blood tests at this time to determine whether your dosage should be altered. In addition, Cytoxan can cause infertility in both men and women when taken for long periods of time. However, an injection called leuprolide (Lupron) can be given to help protect your body against this sterility; you may want to discuss this issue with your doctor before starting the medication. In addition, women can stop having periods when on Cytoxan. However, you can still become pregnant, so it is recommended that you use a method of birth control, since taking this drug can cause serious harm to the fetus. Be sure to talk to your doctor before taking Cytoxan if you are pregnant, could become pregnant, or are breastfeeding.
    Cytoxan can also cause certain bladder problems. In order to use this drug, your body must break it down into several byproducts, one of which can irritate your bladder and cause scarring or blood in your urine. This side effect is common, so you should drink plenty of fluids—at least 8 glasses of water—per day. If you are taking Cytoxan intravenously, you may be given mesna (Mesnex) to prevent these bladder issues.
    Because Cytoxan targets normal cells within your body in addition to those of the immune system, it increases your risk of cancer. The more Cytoxan you take and the longer you take it, the greater your risk of developing cancer, even later in life. Leukemia and bladder cancer are the most common form of cancer developed in patients taking Cytoxan, so your doctor should perform urine tests regularly.
    Cytoxan can interact with certain drugs, so be sure to tell your doctor about any medications you are taking, either prescription or over-the-counter. Also tell him/her about any dietary supplements (including herbal supplements) and/or vitamins that you may be taking. The following drugs can interact with Cytoxan: the gout medication allopurinol (Aloprim, Zyloprim), phenobarbital (Solfoton), warfarin (Coumadin), thiazide diuretics, such as hydrochlorothiazide, and some psychiatric medications. Be sure to notify your doctor if you are taking any of these medications.

    Chlorambucil (Leukeran) and nitrogen mustard (Mustargen)
    Chlorambucil (Leukeran) and nitrogen mustard (Mustargen) are cytotoxic medications similar to Cytoxan. They have been used in the past to treat lupus symptoms but are not used as commonly as Cytoxan at present. Leukeran is usually taken by mouth and is commonly used in Europe and developing countries. In the U.S., it is usually given to people who cannot tolerate Cytoxan or who have an allergy to the medication. The medication is usually tolerated better than Cytoxan tablets. However, it is more dangerous than IV Cytoxan because it must be taken for a longer period of time, which increases the risk of developing cancer. Therefore, if you take Leukeran tablets, you should do so only for a maximum of two years.
    Nitrogen mustard was actually the first cytotoxic medication found to be effective in the treatment of lupus. However, it is seldom used today because it is trickier to administer and it must be given intravenously in the hospital. Your doctor will speak to you in more detail if this medication becomes involved in your treatment.
    ∗ People with lupus should not take Bactrim, sulfa antibiotics (e.g., Gantrisin, Septra), or sulfa diuretics (e.g., Aldactone), since these medications can cause lupus flares by increasing sun sensitivity and occasionally lowering blood counts. If you are prescribed one of these medications, talk to your doctor about possible alternatives.


    Methylprednisolone (Medrol)
    Dexamethasone (Decadron)
    Triamcinolone IM
    IV methylprednisolone (Solu-Medrol)
    Topical Steroids

    What are steroids, and why are they used to treat lupus?

    Steroids are a group of chemicals that make up a large portion of the hormones in your body. One of these steroids, cortisone, is a close relative of cortisol, which the adrenal glands in your body make as a natural anti-inflammatory hormone. Synthetic cortisone medications are some of the most effective treatments for reducing the swelling, warmth, pain, and tenderness associated with the inflammation of lupus. Cortisone usually works quickly to relieve these symptoms. However, cortisone can also cause many unwelcome side effects, so it is usually prescribed only when other medications—specifically NSAIDs and anti-malarials—are not sufficient enough to control lupus.
    The word “steroid” often sounds frightening because of the media attention given to the anabolic steroids that some athletes use to put on muscle. However, it is important to remember that steroids make up a large group of molecules with different functions, and the steroids given to treat lupus—specifically, corticosteroids—are different than those you may hear about on the news.

    How do corticosteroids work to reduce inflammation in the body?

    Inflammation is the body’s natural response to events such as injury, infection, and the presence of foreign substances—things your body doesn’t recognize as a part of itself. Sometimes, however, as with lupus, your body’s immune system does not function properly, and the inflammatory response works to damage your own tissues, causing stiffness, swelling, warmth, pain, and tenderness in different parts of the body. Corticosteroids help to slow and stop the processes in your body that make the molecules involved in your inflammatory response. These steroids also reduce the activity of your immune system by affecting the function of cells in your blood called white blood cells. In reducing inflammation and immune response, corticosteroids help to prevent damage to the tissues in your body.

    What steroid medications are commonly prescribed for lupus?

    Prednisone is the steroid most commonly prescribed for lupus. It is usually given as tablets that come in 1, 5, 10, or 20 milligram (mg) doses. Pills may be taken as often as 4 times a day or as infrequently as once every other day. Usually, a low dose of prednisone is about 7.5 mg per day or less, a medium dose is between 7.5 and 30 mg per day, and a dose of more than 30 mg qualifies as a high dose. Your doctor may also prescribe a similar drug called prednisolone, especially if you have had any liver problems. Prednisolone and prednisone are very similar. In fact, the liver must convert prednisone to prednisolone before the body can use it.
    Sometimes lupus flares can be treated with an intra-muscular (IM) injection of a drug called Triamcinolone. These injections are usually given at your doctor’s office, and they often reduce flares without some of the side-effects that would accompany an increase in the dosage of an oral steroid like prednisone. Usually, the only noticeable side effect of these injections is a dimple or loss of pigmentation at the injection sight.
    Steroids can also be given intravenously (IV) in the form of methylprednisolone (Solu-Medrol), and your doctor may prescribe higher doses of methylprednisolone (1000 mg) given over 3-5-day period. These treatments are often referred to as “pulse steroids.” Other forms of steroid medications commonly given for lupus are hydrocortisone, methylprednisolone (Medrol) dose packs, and dexamethasone (Decadron) tablets. These medications vary in potency. For example, hydrocortisone is weaker than prednisone, methylprednisolone is stronger, and dexamethasone is very potent. Ointments containing corticosteroids are also commonly prescribed for lupus rashes.

    What are the side effects of steroid medications?

    Steroid medications can have serious long-term side effects, and the risk of these side effects increases with higher doses and longer term therapy. For this reason, steroid medications are usually prescribed only after other less potent drugs have proven insufficient in controlling your lupus. Your doctor will work with you to determine the lowest dose of steroids necessary to control your lupus symptoms and will prescribe steroids for the shortest possible amount of time. Steroids are sometimes combined with other drugs to help reduce some of these side effects.
    Possible side effects of taking these steroid medications are:

    • Changes in appearance
      • Acne
      • Development of round/moon-shaped face (sometimes called “Cushing’s syndrome” after the physician who first described it)
      • Weight gain due to increased appetite
      • Redistribution of fat, leading to swollen face and abdomen, but thin arms and legs
      • Increased skin fragility, leading to easy bruising
      • Hair growth on the face
    • Psychological problems
      • Irritability
      • Agitation, psychosis
      • Euphoria/depression (mood swings)
      • Insomnia
    • Increased susceptibility to infections
    • Stomach irritation, peptic ulceration
    • Irregular menses (periods)
    • Potassium deficiency
    • Aggravation of the following preexisting conditions:
      • Diabetes
      • Glaucoma
      • High blood pressure
    • Increase in:
      • Cholesterol
      • Triglycerides
    • May suppress growth in children
    • Long term side effects:
      • Avascular necrosis of bone (death of bone tissue due to lack of blood supply):
        • Usually associated with high doses of prednisone taken over long periods of time.
        • Produces pain, including night pain. Pain relief usually requires either a core bone biopsy or total surgical joint replacement.
        • Occurs most often in hip, but can also affect shoulders, knees, and other joints.
      • Osteoporosis
        • Thinning of the bones.
        • Can lead to bone fractures, especially compression fractures of vertebrae with severe back pain.
      • Cataracts
      • Glaucoma
      • Muscle weakness
      • Premature atherosclerosis – narrowing of the blood vessels by cholesterol (fat) deposits.
      • Pregnancy complications –Doses of 20mg or more have shown to increase pregnancy and birth complications, such as preeclampsia.

    What can I do to stay as healthy as possible while taking my steroid medications?

    While taking steroid medications such as prednisone, it may seem that your body’s reactions to the things you do and the food you eat are out of your hands. If you feel overwhelmed or frustrated with some of the outward effects of your medications, your doctor can help you to come up with some strategies to minimize side-effects. However, it is important to realize that you play the most important role in helping yourself to stay as healthy as possible. There are many things you can do on a daily basis to help minimize the side effects of both steroid medications and your lupus symptoms.
    A healthy diet is important for everyone, but it is especially important for people with lupus and those taking steroid medications. While taking steroids, your cholesterol, triglyceride, and blood sugar levels may increase. For these reasons, it is absolutely essential that you not increase your calorie intake and follow a low sodium, low-fat, and low-carbohydrate diet. You do not need to cut out all of the foods you love, but concentrate on eating whole grain breads and cereals and lean sources of protein such as chicken and fish.* When you need a snack, look to vegetables—they are low in sugar and calories and provide the perfect food for “grazing.” Try to eat them without Ranch dressing or vegetable dip, because these items carry lots of fat and calories. If you need something to accompany your vegetables, try lighter dips like hummus. It is also important that you minimize alcohol intake when taking steroid medications, since steroids may already irritate your stomach. In fact, it is best not to drink alcohol at all, because combining alcohol with certain lupus medications can be very harmful to your liver.
    Steroids may deplete certain vitamins in your body, such as vitamins C, D, and potassium. Your doctor may recommend for you to take supplemental vitamins or increase your intake of certain foods in order to make up for these deficiencies. Usually it is beneficial to take a multivitamin every day, but speak with your doctor to see which one is right for you, since some vitamins can adversely affect certain conditions. For example, people with antiphospholipid antibodies, especially those taking anticoagulants such as warfarin (Coumadin), should avoid vitamin K because it can increase the risk of blood clots.

    Steroids can also contribute to a thinning of the bones known as osteoporosis, which may put you at an increased risk for bone fractures. Your doctor may prescribe a drug for osteoporosis or advise you to take a calcium or hormone supplement. Bisphosphonates such as Actonel, Fosamax, and Boniva are commonly prescribed, as are parathyroid hormone (Forteo) and other medications. To help keep your bones as strong as possible, try to increase your intake of calcium and vitamin D. Calcium helps to keep bones strong and vitamin D helps your body make use of calcium. Foods high in calcium include milk and milk products, tofu, cheese, broccoli, chard, all greens, okra, kale, spinach, sourkraut, cabbage, soy beans, rutabaga, salmon, and dry beans.
    Staying Active
    In addition to increasing your risk of osteoporosis, steroid medications can weaken your muscles. Staying as active as possible will help you to maintain strong muscles and bones. Weight-bearing activities such as walking, dancing, and running will help your muscles stay strong and healthy. Many people report that these activities make them feel better mentally as well. In fact, there are actually chemicals in your brain triggered by significant exercise (usually about 30 minutes per day) that help you to attain a “natural high.” Your doctor can help you to assess your personal condition and decide on an exercise routine that is best for you. However, you should never put yourself through more than reasonable discomfort when exercising.
    People with lupus should never smoke due to their increased risk of cardiovascular disease. Steroid medications increase this risk by upping blood pressure, triglycerides, and cholesterol. Smoking, steroids, and lupus make a very bad combination.
    Steroid medications can also increase the risk of infection; this risk increases if you are also taking immunosuppressive drugs. For this reason, it is important that you try to avoid colds and other infections. Washing your hands regularly is perhaps the best way to keep germs at bay. More serious infections can lead to serious—even fatal—illness. The infections that most worry doctors are kidney infection, a type of skin infection called cellulitis, urinary tract infections, and pneumonia. It is important to be on the lookout for any changes in your health, because people taking steroids may not run a fever even though they are very ill. If these infections go untreated, they could enter the bloodstream and pose an even bigger threat, so it is important that you notify your doctor at the first signs of an infection or illness. In addition, live virus vaccines, such as FluMist, the small pox vaccine, and the shingles vaccine (Zostavax) should be avoided because they may cause disease in individuals taking steroid medications.
    Eye Exams
    Finally, since medications can increase your risk of cataracts and aggravate glaucoma, try to get an eye exam twice a year. Notify your doctor of any major changes in your vision.

    Do not abruptly stop taking steroids

    You should not stop taking steroids abruptly if you have been taking them for more than 4 weeks. Once your body has adjusted to taking steroids, your adrenal glands may shrink and produce less natural cortisone. Therefore, it is important to slowly reduce the dosage of steroids to allow the adrenal glands to gradually regain their ability to produce cortisone on their own.

    Are there other drugs that I might take while taking steroids?

    Steroids are often given in high doses, which may increase the risk of side effects. Medications called “immunosuppressive” drugs are sometimes prescribed in addition to steroids to help spare some of these undesirable side effects. However, as their name suggests, immunosuppressive work to suppress the immune system, so when taking these drugs, it is important to watch out for infection and notify your doctor at any sign of illness. If you do acquire an infection, you may be prescribed an antibiotic or other medication, but be sure to stay away from Bactrim, since this medication can cause flares in some people with lupus.
    Because of the risk of osteoporosis, your doctor may also prescribe a bisphosphonate such as Actonel, Fosamax, or Boniva. She/he may also recommend taking calcium or vitamin D supplements to reduce bone thinning. Your doctor may also prescribe a diuretic to deal with bloating, fluid retention, and hypertension (high blood pressure).
    In addition, since cortisone can cause elevated cholesterol, your doctor may prescribe statins such as Lipitor, Crestor, Vytorin, or Caduet. These medications work to lower cholesterol.
    ∗ The omega 3 fatty acids in fish and fish oil also have anti-inflammatory properties, which may help to reduce some of the discomfort in your joints and of having a baby?NSAIDs are forbidden during pregnancy, even while trying to conceive.

Sunday, February 19, 2012

Help for caretakers

This post could really be for anyone that is a caretaker for anyone suffering with any illness.  The caretakers are everyone and anyone who is involved in a survivors life, spouses, parents, children, friends, aunts, uncles, siblings.  Anyone who assists in the daily needs with those stricken with an illness or illnesses.  This can be a very stressful job, and having support, love, and help is vital for the health of the caretakers. Caretakers can become ill themselves and need help for their own problems.  To watch how much my husband, children, parents, and friends all rally around me and help me is such a blessing.  I also am mindful of their struggles with dealing with my illness on top of their own issues.  

Significant Others and Lupus

Posted in Lupus Articles on 7/27/2010
The family member/significant others of the sufferer of a chronic illness like lupus, in m ay ways, experience feelings similar to that that of the primary sufferer. They not only want to give support and help the sufferer deal with his/her feelings, they also need to deal with their own feelings regarding lupus and the impact on their relationship with the sufferer.
Significant others may feel responsible for taking care of the sufferer or helping the patient make decisions. They want to give him/her support but don`t know how to or what to say or do.
Feelings of Significant Others
  • Concern for the loved one with lupus or other chronic illness
  • Confusion about how to deal with the complexities of their illness
  • Difficulty understanding why did this happen
  • Helplessness - wishing they could have protected their friend/partner or prevented this illness and wanting to fix the situation so that life can get back to "normal"
  • Shame - there is something wrong with this person. This shame could lead to feeling a need to distance them from the sufferer, leaving the sufferer feeling isolated, rejected or blamed for being ill, which can be very damaging
  • Temporary loss of intimacy with the patient. It may be difficult for the significant other to deal with the disease. Patients have been forced to recognize their own vulnerability, and as a result may find it difficult to trust enough to be close, even when the relationship is strong and nurturing. Intimacy will return with the help of a nurturing, patient partner
  • Feeling out of control of their life. The illness has changed the significant others; nothing feels the same. feeling out of control is a normal response to a critical incident; control will return with time
  • Although a natural reaction, wanting to strike out (anger) but not knowing who or what to blame
  • Frustration with professional systems
  • Anger. Anger can be a healthy response to an illness and can be directed at the disease or the systems that don`t work. Although anger is appropriate, acting out violently is not appropriate. Significant others need to understand the venting anger on the patient is counter productive. Difficutly expressing their own feelings, difficulty asking for help - may feel that because they are not the primary sufferer they shouldnt be using patient support systems or thaty they should be able to handle it.

Remember giving support means listening, asking how you can help, encouraging, helping the patient ask for what he/she needs, being sensitive and patient, not trying to "fix" the situation, supporting decisions that allow him/her to regain control over his/her life.
No one aks to be involved in a chronic illness. It is not easy. Significant others are responsible for dealing with and finding support for their feelings regarding the illness and their relationship. A chronic illness like lupus is on-going anad it is a normal reaction to want it "over with". Hurry up and get well messages will only force the patient to stuff feelings, internalizing her/his anger and pain, causing him/her to distance themselves from those that care about them, causing them to feel further isolated.
A disruption of routine, even without illness is anxiety-producing. Recognize that you and the patient may both be in crisis. Prioritize issues that need immediate attention and let go of the decision that can wait. All patients blame themselves to a degree for an incident or for being unable to prevent it. reassure the patient many times that it wasnt her/his fault - that he/she did the best they could, that they did nothing to bring this upon themselves.
Your own feelings, personality or your role with the patient may make it difficult to ask for help. it is extremely important for you to talk about lupus, and its affect on you with a supportive person, who has knowledge or sensitivity about the issues surrounding lupus, and your relationship to the patient.

You are a caregiver if you give basic care to a person who has a chronic illness like lupus. If you are a caregiver you might be doing the following things for someone you care about who has lupus:
  • Lifting
  • Bathing, dressing, feeding, cooking and shopping
  • Paying the bills
  • Running errands
  • Giving medicine
  • Keeping him/her company
  • Providing emotional support
  • Taking him/her to doctors visits
  • Keeping records of symptoms, doctor visits, medications and more

Common Signs of Caregiver Stress Include the Following
  • Feeling sad or moody
  • Crying more often than you used to
  • Having low energy levels
  • Feeling like you dont have any time to yourself
  • Having trouble sleeping, or not wanting to get out of bed in the morning
  • Having trouble eating, or eating too much
  • Seeing friends or relatives less often than you used to
  • Losing interest in your hobbies or the things ou used to do with friends or family
  • Feeling angry at the person you are caring for or at other people or situations

If you are feeling overwhelmed and stressed these feelings are not wrong or strange. Care giving can be very stressful. Because being a caregiver is hard, some doctors think of caregivers as "hidden patients". If you dont take care of yourself and stay well, you wont be able to help anyone else.
Talk with your family doctor about your feelings. Stay in touch with yoru feelings and family members. Ask them for help in giving care. Asking for help doesnt mean you are a failure. Look for help in your community. You may start asking your church or synagogue if they have services or volunteers who can help you. You can also ask for help from support organizations like the Lupus Alliance. 

Caring Others 

  This section will focus on how families, friends, co-workers and employers are able to best help the person they know with lupus.  The term Caring Others encompasses all possible people who may know someone with lupus and who want to learn how to best support them.

There is no right or wrong way to support a person with lupus. The key is listening and really hearing what your loved one is asking for and what they need help with.  
Always remember, they may look "normal", even fantastic, but that doesn't mean they are feeling well.  This is probably the greatest single area of understanding you should always keep in mind.
 Caring Others Overview Part II
Lupus patients rely on an army of healthcare professionals to combat the many aspects of their disease.  However, on the home front, wives, husbands, children and other loved ones play crucial roles in helping lupus patients cope and live life as fully as possible.
This series of articles will focus on “caring others” – those people who live, laugh and love with relatives and friends who have lupus.  Because the disease is so individual, several different aspects of the caring others relationship will be explored, from parent to child to spouse to friend and beyond.
There are many turning points, frustrations, and victories that caring others experience – a whole lot of tears and laughter!  Through it all, there are valuable insights that come with coping with a chronic disease.  These articles will share the personal ups and downs of the remarkable people who care about and for their loved ones with lupus.  And hopefully, through individuals’ stories, some common ground, understanding and encouragement will be given, too.
When the Life of a Loved One is Turned Upside Down
The effect of a person’s lupus diagnosis on loved ones can bring on a wide array of emotions:  Denial, grief, confusion, fear, even relief.  Besides coping with the patient’s illness, the loved one must grapple with these internal emotions, which are often powerful and painful.
“Before she was diagnosed with lupus, I didn’t have any strong feelings about her physical health,” says Joyce, the mother of Maureen, and adult lupus patient.  “The diagnosis was a sho ck, and afterward there was a complete upheaval in my own thinking about her well-being.”
“Prior to her diagnosis, it was very confusing.  I knew something was wrong, but the problem with lupus is that you don’t look sick necessarily,” says Irv, who has been married to Brian Ann for 21 years.”  “After her diagnosis, I still didn’t know what lupus was.  But it was happening.”
Because the course of the disease varies from patient to patient, loved ones also can experience frustration at the degree of change and upheaval in everything from medications and treatments to daily routines.
“In the beginning, it sounded like a disease that was a nuisance.  I didn’t comprehend the life-threatening and debilitating aspects of it,” says Alan, who has been together with Barbara for 10 years.  “Time certainly took care of a lot of that knowledge.”
“With any chronic disease, there’s an element of surprise,” says Jeff, who has been married to Fredi for almost 17 years.  “With lupus, you’re bound to have surprise; you just never know what each day will bring.”
Other aspects of the world of lupus can be just as difficult for a loved one to have to face.  Joyce says, “It would make life easier if there were more research into the disease.  It’s frustrating that there hasn’t been a whole lot of research.”
“It tests your dedication, love and caring for the other person like nothing I can think of,” says Jeff.
“With lupus, ‘A’ never equals ‘B’ – there’s a whole big alphabet out there,” says Alan.
Still, with all the difficulties and unexpected changes, many people nurture and maintain relationships with lupus patients – and speak enthusiastically about it!
“What’s the alternative?” asks Joyce.  “Unless you sever yourself from the relationship.  You need to be there, encourage and pray.  They have to know that there’s someone who cares.”
“I’m part of her and she’s part of me,” says Irv.  & ;ldquo;You’re part of each other.  The more I can help, the better off she is and therefore I am.” 
“Who wants to marry a lupus patient?”  asks Alan.  “The truth is, lots of people!”  In fact, many relationships thrive in the midst of the frustrations and difficulties in coping with lupus.  Jeff says:  “You come to terms with accepting the fact that the person you married, who you love, has this disease.  If you love that person, then you have to deal with it.  If you love somebody, you will give it your best shot.”

Caring Others Part III

By Maureen Pratt
People who care for others with chronic illnesses have many concerns to worry over, take care of, and resolve.  But sometimes, a crucial part of that care is overlooked  -  a person, an individual: the caretaker him – or her-self.  In this issue of Lupus Line, we will focus on the caretaker, and some of the tools he or she can use to rejuvenate, refresh, and maintain health and well-being in the midst of the unpredictable world of living with lupus. 
Caregivers sometimes have an almost super-human notion of what is expected of them as they help a loved one cope with lupus.  While we as lupus patients need strong support in our day-to-day struggle, it is unrealistic to think that the caregiver doesn’t need some attention, too.  Even though he or she might not always realize that, at first.
“I think I’m expected to be strong, not have the emotions, cry, or express worries or concerns,” says Nicki, who has cared about and for Pam for ten years.  “Every now and then, of course, I show them.  But I think this is what I’ve had to do inmy own private times.”
“Sometimes, caregivers have as much stress as the patient does,” says Misti, a lupus patient and facilitator in a lupus support group in the Inland Empire, California, USA.
That stress can often bring about new problems in a relationship that is already strained by the upsetting nature of lupus.  A caregiver could become alienated from the loved one, fall ill, or suffer other negative consequences.  But, Misti says, “Caregivers are responsible for their own welfare, and that’s hard if you’re not given permission to express the feelings you have about your loved one’s illness.”
To help ease some of the stress felt by caregivers.  Misti’s husband, Tim, became a co-facilitator of a caring others support group.
“I went through the transition from denial to having a fatalistic outlook to acceptance and participation,” says Tim.  “Then I really started thinking, ‘I’m not out here by myself with these thoughts and feelings and frustration.  I’m sure a lot of people are dealing with these problems.”
Besides providing information, the group also gives others the opportunity to express their emotions, which can be very beneficial to the relationship.
“When you disconnect emotionally, you pay for that down the road,” says Tim.  “It’s okay to be angry, okay to have regrets, okay to vent.  The format of the group is open, informal, and interactive.  I invite people to not expect pearls of wisdom, but do expect people going through the same things you are.  No judgements.”
Still, caregivers can sometimes judge themselves, harshly.  At those times, it is important to remember that, like the lupus patient, the caregiver is human, too.
“When I have a cold,” says Jay, the daughter of Jean, “I sometimes fell bad to be complaining at all, because it can’t be nearly as bad as how my mother feels.  But you have to take time out for yourself, as well.”
In addition to maintaining a healthy lifestyle, the caregiver should not feel as though his or her activities revolve exclusively around lupus.
“I always have activities outside the home, especially classic car restoration,” says Tim.  “I’m really now starting to enjoy and value family life, too.  For instance, I can play on the computer at home.”
“I take personal time,” says Carlos, who co-facilitates the Inland Empire (California) Caring Others support group and is married to Linda, a lupus patient.  “I belong to a bowling league.  I’ll also work on the computer at home.  That way, we have time to ourselves, but we’re there for each other, too.”
“My interests have stayed the same.  My friendships outside the relationship have stayed the same,”  says Alan, who has been with Barbara for 10 years.  “I did take up golf.  Barbara encouraged that, and also prompted me to wear a long-sleeved shirt and sunscreen!”
To keep the relationship strong, however, it’s important to share activities with the loved one, too.
“We have our own things.  I like posters, she likes jewels,” says Irv, married to Brian Ann for 21 years.  “And I have a lot of things I can do on my own, such as reading or watching a show.  But you start growing in a different direction if you’re not sharing things together.
Bob, married to Jody for 18 years, says, “ We had to come up with other things to do besides biking and hiking and going out in the sun.  But the whole thing about a relationship is growing together and coming up with new and meaningful things.  Having a chronic illness in the relationship just means you have to be more obvious about it.”
Keeping in touch with the inner self, through prayer or meditation, can also help support a caregiver.
“It took a couple of years to calm down,” says Nickie.  “Now, I kind of renewed my spiritual side and pray a lot.  There’s been more optimism within me.”
“The key word is: ‘patience,’” says Tim.  “If there’s a nugget of wisdom for me, it’s to slow down for a minute and pray for patience.  It goes a long way.”
The lupus patient can assist his or her caregivers, too, in reducing the stress of living with a chronic illness.
“What really helped me through this whole thing is that I had somebody to start off with who was dealing with is so well,” says Tim.
“I give Jody a lot of credit,” says Bob.  “She’s a strong person, and she’s certainly done her part to try to keep things together and good.  She always has a terrific attitude.”
“I like my mother,” says Jay.  “If she wasn’t my mother, I would like her.” 
Living with lupus is never easy for the patient.  But for the caregiver, it is also difficult.  With open communication, some creative alternatives to past activities, and understanding on both sides, however, a relationship can survive and thrive – with lupus, in spite of lupus, and beyond lupus!

Helping Hands
Roles are redefined when you become the caregiver of a loved one.
By Amy Paturel, M.S., M.P.H.

For as long as Jennifer Castro can remember, she and her mom, Rebecca Utley, were best pals. Pregnant at just 17, Rebecca raised Jennifer on her own, and in a way, the two grew up together. In fact, for as long as Castro can remember, “It was just Mom and me.”

When Castro was 23, her mom began experiencing skin rashes, headaches, sun sensitivity, and fatigue, and was ultimately diagnosed with lupus. As the disease progressed, Utley filed for disability, stopped working, and spent most of her time in bed or on the couch.

“When I wasn’t working, I was taking care of her appointments, grocery shopping, cooking, cleaning, and picking up prescriptions. I wasn’t used to that kind of responsibility,” says Castro, now 33 and a pharmacy technician in Mabank, TX. “She didn’t want to be a burden, but there were days when she couldn’t walk from the bedroom to the bathroom by herself. It was really difficult for both of us.”
Roles Redefined
Castro’s experience isn’t uncommon among caregivers. Many experience changing dynamics in their relationship when a loved one is handed a lupus diagnosis. “You have this additional role as caregiver, and that could change your relationship,” says Gail Hunt, president and CEO of the National Alliance for Caregiving.

Such changes can be uncomfortable for both the caregiver and the person with lupus, particularly when the transition involves taking on additional and sometimes nontraditional roles.

Keeley Moss is a 26-year-old cosmetologist in Franklin, LA, whose mom was diagnosed with lupus seven years ago. Before the diagnosis, Moss’ mother, Lisa, was in complete charge of the household and took care of the whole family. “Now, all she wants to do is stay in bed,” says Moss, who manages the household on her own. “Sometimes, she can’t even do simple things like run her own bath water.”

Even though she’s often exhausted, Moss does it all without complaint. “I realize it’s just as much of a struggle for my mom as it is for me,” she says. “My job is to make life as normal as possible for her.”
Communicating in New Way
It’s not uncommon for parents to hold back information about how they’re feeling, physically and emotionally, because they’re worried about burdening their children, explains Joni Aldrich, author of Understanding With Compassion: Help for Loved Ones and Caregivers of a Brain Illness Patient. Trouble is, that information is critical to providing the best care for the person with lupus.

The key to managing these changing roles? Communication. The goal is to make sure the care receiver is honest with the caregiver about their symptoms, pain and illness, Aldrich says. Ask questions and be patient, but firm, as you await their responses. “Carefully explain why their cooperation is needed and what each question will tell you,” says Aldrich. “If you have to repeat the reasons, use the exact same phrasing each time so it registers in their brain.” Still no luck? Ask siblings and other family members to help or turn to medical workers who can relay the information more effectively.

According to Aldrich, caregivers and care receivers alike do best when there’s some sense of normalcy. That means allowing the person with lupus to take on any roles and responsibilities he or she can manage. “Don’t treat the care receivers like invalids,” she says. “Encourage them to do as much as they can, perhaps by giving them simple tasks that will make them feel useful.”

Even though Castro’s mother couldn’t do much physical work, Castro would encourage her mom to do a load of laundry from time to time or tidy up the kitchen. “I would also encourage her to go to shopping with my aunt if she was feeling up to it, or I’d ask her to join me for a movie.”
Form a Support System
Caregivers shouldn’t try to tackle their new role solo. “Early in the process, when you find out your loved one has lupus, make a list of local resources, and people who can help you when you’re in a pinch,” Aldrich says. In many cases, the people on that list will be other family members: kids, siblings, aunts, uncles, even distant cousins.

When Rick Lyons’ wife, Lori, was diagnosed with lupus in 1996, her symptoms were fairly mild at first. She struggled with skin problems, migraines, and heat sensitivity, but she was able to maintain a full-time job and care for their three sons. But in 2004, Lori was hospitalized for severe fatigue, and the couple knew roles around the house would change.

“She had to leave her job, and there came days when she couldn’t work around the house, either. Sometimes she couldn’t even make a sandwich,” says Lyons. What’s worse, Lori’s illness hit when two of their boys were heading off to college. “We lost our house and battled for two years to get Lori approved for Social Security disability income,” Rick says. Without Lori’s income, the couple couldn’t afford their mortgage and other bills and eventually filed for bankruptcy.

During that time, their youngest son, Mike, who was 18 at the time and living at home, stepped in. “He was a huge help,” says Rick. “He went to the store for us, cooked us dinner, and did everything he could to make her laugh.”

Mike, now 24, began collecting puppets and would entertain his mom with them, and, when she was up for it, he would take her to the store. That’s when their dark sense of humor kicked in. “She would drive a motorized cart, and he would push a regular cart,” Rick says. “They liked pretending like they didn’t know each other, and then he would be rude to her while she was in the chair—run into her with his cart, for example—to see what the other shoppers would do.”

While family members can be a great resource, it’s also important for caregivers to take advantage of other support services, Hunt says. “Investigate the options available for you at your workplace; for example, ask your supervisor if you can telecommute, or take a leave of absence, or use flex time for an extended vacation. Also, find out what federal assistance programs are available to you.” If your parent, spouse, or a dependent child is affected, you may qualify for the Family Medical Leave Act.

Don’t forget the treasure trove of information online. Not only can you identify support groups, respite care, and caregiver organizations, but online you can also connect with other caregivers, ask questions, and develop additional support networks. And don’t be afraid to join a support group or get counseling if you need it. Counseling is available from many sources, including religious facilities, medical centers, and community centers. The Lupus Foundation of America (LFA) health educators can also offer resources and suggestions for counseling services; call them toll-free at (800) 558-0121.

“A lot of people don’t take advantage of counseling,” says Aldrich. “There’s still a stigma attached to it, and some people don’t want to discuss personal issues with strangers.” But Aldrich stresses that asking for help to develop some life balance does not make you weak. In fact, she says, “working through such an emotional upheaval will make you a stronger, better person.”

Today, the Lyons family is back on its feet, enjoying what Rick calls a “good period,” one of the longest Lori has had in years. “You have to be able to laugh and have fun,” says Lyons. “We didn’t want to live in a bubble, so we never avoided any family get-togethers, even if we knew Lori would be in bed for the next three days. For us, it is all about making the good times even better.” Today, the two often sit outside watching the birds while they drink their coffee, taking pleasure in the little things they once took for granted.
There is a danger, though, that caregivers can become so busy and overwhelmed that they push their own health aside. They neglect themselves, focusing instead on the person they’re caring for. “Caregivers may know all about the latest clinical trials for people with lupus, but they don’t think about the toll caregiving is taking on their own health,” Hunt says. “They tend to neglect about routine health issues; they don’t get breast or prostate exams or take flu shots.”

And consider this: Taking care of yourself is also good for the loved one you are helping. In many cases, the person with lupus is ready for the caregiver to get out of the house. “It’s a good break for both parties,” says Aldrich. “You can’t be with someone 24/7, especially in a high-stress situation, without it beginning to wear on you.”

Stephanie Agee’s daughter Kristin, 29, and son James, 24, both have lupus and live with her. Currently, her daughter’s symptoms are more severe. But Agee, 53, of North Las Vegas, NV, makes a point of participating in a bowling league twice a week. “You just have to find the time, and then plan for when you’re away,” says Agee, who makes sure someone is with her daughter on the days she bowls. “You have to allow yourself to enjoy whatever moments you do have, even if it’s just five minutes.”

Without focusing on their own care, caregivers can suffer burnout, erupt in bursts of anger, or suffer nervous breakdowns. So leave the guilt behind. Eat properly, schedule your own doctor’s appointments, and set aside time for a massage or meditation. Most of all, get some exercise. Studies show that regular exercise is not only good for your body, but that it also improves your emotional health and well-being. Researchers from Northern Arizona University found that just 10 minutes of moderate exercise, such as a brisk stroll or a short bike ride, improves your mood and re-energizes you.

Plus, making time for yourself beats the alternative: Getting sick. Experts agree it’s not uncommon for caregivers to work themselves sick while taking care of their loved ones. Lyons, Castro, and Moss all struggled with their own health issues while still trying to act as caregivers. “When I was sick, my mom was trying to take care of me, and I felt completely guilty,” Castro says. “I was so concerned about her that I didn’t really care what happened to me.”

Moss had a similar experience when she was diagnosed with fibromyalgia two years ago. At times she feels too achy to move, much less keep up with her responsibilities as a caregiver and her own duties. That’s why it’s critical to have a list of people you can turn to. “When people want to help, let them help,” Moss says. For example, Moss shares the responsibility of driving her mom to medical appointments with her dad and brother. “We try to rotate so I can get a bit of a break,” she says.
Facing the Empty Nest
Facing the loss of a loved one is always difficult, but if you’re the primary caregiver, the emotional blow can be even greater. “When your ‘shift’ as a caregiver is over, loneliness, grief, and confusion may replace the feelings of being needed,” says Aldrich. “Suddenly things are too quiet and you’re not being pulled in three different directions. It can be very hard to fill the emptiness that’s left behind when you’re no longer devoting your time and energy to daily caregiving.”

Castro knows those feelings all too well. “My mom was always there, and we were always together,” she says. “And for 10 years, I was her primary caregiver.”

On June 1, 2010, Castro’s mother passed away from complications of lupus. After her mother died, Castro found herself wanting to be around people—friends, family, anyone. So she packed up the car and took a road trip with her best friend. She spent a lot of time with her aunt and uncle, and she tried to adjust slowly to a life without her mom.

“You’re not only losing a spouse or a sister or a mother, you’re also losing a daily way of life and the time you spent together,” says Aldrich. “That’s an emotional double whammy.”

There may be many tasks to distract you in those initial days and weeks following a loved one’s death. But once the relatives are gone, former caregivers will need to create a new normal. Experts agree it’s important for caregivers to take it one step at a time to re-establish their footing. Caregivers should take some time for themselves before jumping into a new hobby or a new career. Some former caregivers find a sense of purpose by getting involved with the their local LFA chapter, supporting other caregivers, or volunteering their time to a charity. Such activities can provide a sense of accomplishment at a time when they’re feeling lost and alone.

In April 2011, Castro and several of her family members participated in a fundraising walk for the LFA, North Texas Chapter. The group agreed to make it an annual tradition in honor of Castro’s mom. “Everyone has a cause or charity they’re partial to, and lupus is going to be mine,” says Castro. “I feel like I’m still trying to adjust to life without Mom. I just have to take one day at a time.”

While caregiving can be physically and emotionally demanding, there are rewards, too. As a caregiver, Moss has come to discover that she’s giving herself the greatest gift. “I’m so close to my mom,” she says. “I feel like I have to spend every moment with her while I still can.”

Caregiving Resources