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Lupus Signs, Symptoms, and Co-occuring Conditions

Lupus affects everyone differently, but certain signs and symptoms are common. [A sign is medical evidence your doctor finds during a physical exam, such as a specific rash; a symptom is a subjective indication of disease, such as joint stiffness or a headache.] In addition, other conditions, such as fibromyalgia, occur commonly in people with lupus but are not directly due to disease activity. These co-occuring conditions are known to doctors as “comorbidities.” Several signs, symptoms, and comorbidites of lupus are detailed below.

Fever

The average human body temperature is around 98.5°F, but many people run just above or below that mark. A temperature of 101°F is generally accepted as a fever. Many people with lupus experience reoccurring, low-grade temperatures that do not reach 101°. Such low-grade temperatures may signal oncoming illness or an approaching lupus flare. Fever can also signal inflammation or infection, so it is important to be aware of the patterns of your body and notify your physician of anything unusual.

Joint Stiffness

Many lupus patients experience joint stiffness, especially in the morning. People often find that taking warm showers helps to relieve this problem. If this habit does not offer comfort and joint stiffness prevents you from daily activity, be sure to speak with your doctor. He/she will examine you for any signs of joint swelling and can speak with you about medications that may ease some of this pain and inflammation, such as over-the-counter pain treatments and NSAIDs. Tenderness of a joint in known as arthralgia, and it is important that your doctor distinguish this from the arthritis (true swelling) that may accompany lupus.

If you experience a fever lasting a few days or fevers that come and go over the course of a few days, you should take your temperature twice daily and keep a record. Certain trends may alert your doctor to specific processes occurring in your body. In addition, a fever of 101°F or more should be given medical attention. If you are taking steroid medications such as prednisone, be alert for any sign of infection, since steroids can suppress your immune system while also masking symptoms of infection. Immunosuppressive medications such as azathioprine, methotrexate, cyclophosphamide, and mycophenolate also suppress the immune system, so if you begin to feel ill when taking one of these medications, notify your doctor immediately.

Weight Changes

Weight Loss

Increased lupus activity can sometimes cause weight loss, and certain medications can cause loss of appetite. No matter what the cause of your weight loss, you should speak to your doctor to ensure that the loss does not indicate a more serious condition. If you experience a loss of appetite due to your medications, your doctor may suggest alternative medications or solutions to ease stomach discomfort.

Weight Gain

Other medications, such as corticosteroids, can cause weight gain. Therefore, it is very important that you speak to your doctor about maintaining a balanced diet while taking these medications. You may need to reduce your calorie consumption; your physician can refer you to a nutrition counselor if needed. Light to moderate exercise can also help you to maintain a healthy weight and cardiovascular system, while also boosting your mood.

Please remember that it is very easy to gain weight, especially when taking steroids, but it is much more difficult to lose it. It is very important that you try to achieve a healthy weight, because women with lupus between the ages of 35 and 44 are fifty times more likely to experience a heart attack than the average woman. In addition, maintaining a healthy weight helps to alleviate stress on your joints and keeps your organs working productively and efficiently.

Fatigue and Malaise

Ninety percent of people with lupus will experience general fatigue and malaise at some point during the course of the disease. Some people find a short 1 ½ hour afternoon nap to be effective in reducing fatigue. However, exceeding this time frame might lead to problems sleeping at night. If you feel that you are tired throughout most of the day and that fatigue prevents you from engaging in daily activities, speak to your doctor. Fatigue accompanied by pain at certain parts of your body may be a sign of a treatable condition called fibromyalgia. Other fatigue-inducing conditions, such as anemia, low thyroid, and depression, can also be treated. If you and your doctor decide that your malaise is due solely to lupus, try to stay as active and mobile as possible during your daily routine. Often this can be difficult, but many people find that slightly pushing themselves to engage in light to moderate exercise actually increases their energy levels. However, you should never push yourself beyond reasonable discomfort.

Sjogren’s Syndrome

As many as 10% of people with lupus may experience a condition called Sjogren’s syndrome, a chronic autoimmune disorder in which the glands that produce tears and saliva do not function correctly. Sjogren’s can also affect people who do not have lupus. People with Sjogren’s often experience dryness of the eyes, mouth, and vagina. They may also feel a gritty or sandy sensation in their eyes, especially in the morning. This dryness occurs because the immune system has begun to attack the moisture-producing glands of the eyes and mouth (the lacrimal and parotid glands, respectively), resulting in decreased tears and saliva.

It is important that you speak to your doctor if you experience dryness of the eyes and mouth, since the medications for these conditions must be taken on a regular basis to prevent discomfort and permanent scarring (especially of the tear glands). The Schirmer’s test is usually performed to check for Sjogren’s and involves placing a small piece of litmus paper under the eyelid. Eye symptoms can be relieved by frequent use of Artificial Tears, and an eyedrop medication called Restasis is often used to prevent worsening of Sjogren’s. Evoxac (or pilocarpine) can be used to increase both tear and saliva production, and certain lozenges (Numoisyn) can also be helpful for dry mouth.

Depression

Depression and anxiety are present in almost one third of all people with lupus. Clinical depression is different than the passing pangs of sadness that can haunt all of us from time to time. Rather, clinical depression is a prolonged, unpleasant, and disabling condition. The hallmark characteristics of depression are feelings of helplessness, hopelessness, general sadness, and a loss of interest in daily activities. Depression also often involves crying spells, changes in appetite, nonrestful sleep, loss of self-esteem, inability to concentrate, decreased interest in the outside world, memory problems, and indecision. In addition, people who are depressed may suffer from certain physiologic signs, such as headache, palpitations, loss of sexual drive, indigestion, and cramping. Patients are considered to be clinically depressed when they experience symptoms that last for several weeks and are enough to disrupt their daily lives. Patients suffering from depression also often experience a general slowing and clouding of mental functions, such as memory, concentration, and problem-solving abilities. This phenomenon is sometimes described as a “fog.” The cause of depression is not known; sometimes a genetic component predisposes an individual to the condition. Depression is almost never due to active lupus in the brain.

While clinical depression can be caused by the emotional drain of coping with a chronic medical condition and the sacrifices and adjustments that are required of the disease, it can also be induced by steroid medications (e.g., prednisone) and other physiological factors. It is important that you speak with your doctor if you feel you are experiencing clinical depression, because many people who are physically ill respond well to anti-depressant medications. In addition, your doctor may treat your depression in different ways depending on the cause.

Gastrointestinal Problems

Many people with lupus suffer from gastrointestinal problems, especially heartburn caused by gastroesophageal reflux disease (GERD). Peptic ulcers can also occur, often due to certain medications used in lupus treatment, including NSAIDs and steroids. Occasional heartburn or acid indigestion can be treated with an over-the-counter antacid, such as Rolaids, Maalox, Mylanta, or Tums. Your doctor may also include an antacid or another form of GI medication (a proton-pump inhibitor, histamine2 blocker, or promotility agent) in your treatment regimen. Antacids are effective when used to treat occasional symptoms, but you should try to avoid heartburn and acid indigestion altogether by eating smaller meals, remaining upright after eating, and cutting down on caffeine. If heartburn and acid reflux persist (e.g., for more than two weeks), you should speak with your doctor, because your heartburn symptoms could indicate a larger problem.

Thyroid Problems

The thyroid is the gland in your neck associated with your metabolism—the processes by which your body makes use of energy. Autoimmune thyroid disease is common in lupus. It is believed that about 6% of people with lupus have hypothyroidism (underactive thyroid) and about 1% have hyperthyroidism (overactive thyroid). A thyroid gland that is functioning improperly can affect the function of organs such as the brain, heart, kidneys, liver, and skin. Hypothyroidism can cause weight gain, fatigue, depression, moodiness, and dry hair and skin. Hyperthyroidism can cause weight loss, heart palpitations, tremors, heat intolerance, and eventually lead to osteoporosis. Treatment for both underactive and overactive thyroid involves getting your body’s metabolism back to the normal rate. Hypothyroidism is usually treated with thyroid hormone replacement therapy. Hyperthyroidism is treated with anti-thyroid medications or radioactive iodine.

Osteoporosis

Osteoporosis (bone thinning) occurs when the bones lose calcium and other minerals that help keep them strong and compact. This condition can lead to fractures, bone pain, and shorter stature. Everyone is at risk for osteoporosis as they age, but women experience a greater risk of the condition after menopause. Studies have shown that people with lupus are at an increased risk for osteoporosis due to both the inflammation they experience with the disease and the use of prednisone.

Your bones are constantly being remodeled in a process that removes old bone cells and deposits new ones. In people with osteoporosis, the bones lose minerals faster than they can be regenerated. Medications called bisphosphonates (e.g., Actonel, Fosamax, Boniva, and Reclast) can be taken to help prevent your bones from losing calcium and other minerals by slowing or stopping the natural processes that dissolve bone tissue. In doing this, bisphosphonates help your bones remain strong and intact. If you have already developed osteoporosis, these medications may slow the thinning of your bones and help prevent bone fractures. In fact, studies have shown that bisphosphonates can lower your risk of fractured vertebrae—bone segments that make up your spine—by 50%. Similar studies demonstrate that these medications can lower the chance of breaking other bones by 30-49%. However, when bisphosphonates are not successful, patients may need a daily injection of parathyroid hormone (Forteo) to build bone.

Sources

  • Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995.

Lupus and Cancer

Systemic lupus erythematosus (“lupus” or “SLE”) and other autoimmune diseases are linked to an increased risk of certain types of cancer. Specifically, lupus patients may experience an elevated risk of lymphoma and other cancers, such as cancer of the cervix. Researchers have elucidated certain connections between lupus and cancer. For example, it is widely accepted that immunosuppressive medications, such as azathioprine (Imuran) and mycophenolate mofetil (Cellcept) contribute to elevated cancer risk. However, one of the largest studies to investigate this connection suggests that the risk of cancer is actually greatest during the earlier stages of lupus, indicating that exposure to immunosuppressive therapy is not the only link between lupus and cancer. Physicians do not yet understand the precise relationship between lupus and cancer.

Lupus and lymphoma

Studies show an increased risk of both Hodgkin’s and non-Hodgkin lymphoma in lupus patients. It is believed that the elevated risk of lymphoma results from the disease process of lupus—specifically the overstimulation of B-cells coupled with defects in the immune system’s surveillance system—and not just from medications or other associated risk factors. Some suggest that immunosuppressive medications also increase the risk of lymphoma and other blood cancers, especially 5 or more years after taking the drug. In addition, people with Sjogren’s syndrome, which is relatively common in lupus, experience an even greater elevation of lymphoma risk, suggesting that lymphoma in lupus patients may also be linked to this condition.

Lupus and breast cancer

Some data indicate that women with lupus experience an increased risk of breast cancer. Increased estrogen levels might contribute to a higher risk of breast cancer in women with lupus.

Lupus and lung cancer

Lung cancer is about 1.4 times more common in people with lupus than in the general population. Interestingly, people with lupus and lung cancer are more likely to experience rare types of lung cancer. However, like the general population, many of the people with lupus who develop lung cancer are smokers. In fact, 85% of lung cancer is caused by tobacco. It is very important that people with lupus do not smoke. Smoking not only increases the chance of developing lung cancer, it also ups the risk for cardiovascular disease (which is also markedly increased in people with lupus), and prevents lupus drugs like Plaquenil from working properly. If you need help quitting, talk to your doctor. S/he can help you find the most effective strategy to curb your smoking habit.

Lupus and cervical cancer

Certain studies have shown an elevated risk of cervical cancer and abnormal PAP tests in women with lupus. One study linked the increased incidence of abnormal PAP tests with histories of sexually transmitted disease, contraceptive use, and immunosuppressive medications. Some physicians suggest that either the use of immunosuppressives or flawed inherent immunity lead to a decrease in the ability of lupus patients to fight off human papilloma virus (HPV), a virus associated with cervical cancer. [Gardasil (the HPV vaccine)  is recommended for young women with lupus to reduce the risk of later cervical cancer.] However, like much of our knowledge of cancer in lupus, these connections are not fully known or understood.

Lupus and endometrial cancer

New evidence suggests that lupus patients also experience an elevated incidence of endometrial cancer, although the cause for this risk is unknown.

NSAIDs and cancer

It has been found that people with Rheumatoid Arthritis, another autoimmune disease, experience a lower incidence of colorectal cancer than the general population. Although the precise cause of this phenomenon is unknown, it has been attributed to the long-term (10 years or more) use of non-steroidal anti-inflammatory drugs (NSAIDS) and aspirin. Evidence has also been found that long-term aspirin and NSAID use may also reduce the risk of colorectal, breast, and prostate cancer in the general population. It is likely that this benefit also holds for people with lupus, but that does not mean that one should begin taking aspirin and NSAIDs for this reason. In fact, long term NSAID use can increase cardiovascular disease. Therefore, you should only take medications as directed by your physician.

The importance of regular cancer screenings

Despite the increased risk of cancer in people with lupus, studies show that lupus patients are actually equally or even less likely than the general population to undergo cancer screenings. Thus, it is very important that you speak with your doctor about lupus and cancer to ensure that you see the appropriate physicians for cancer screenings as often as recommended.

Healthy habits

Certain risk factors, such as smoking, obesity, hormone replacement therapy, and exposure to immunosuppressive medications, increase the chance that an individual will develop cancer. Therefore, it is also important that you practice healthy lifestyle habits. Obesity also increases the risk of certain cancers, so try to eat foods that help you maintain a healthy weight.

Sunlight causes lupus flares and also increases the risk of skin cancer. People with lupus should avoid the sun whenever possible. If you need to be outdoors, wear sunscreen with an SPF of 85 or greater and be sure that your sunscreen contains Helioplex to protect you from both UV-A and UV-B rays.

Sources

  • Gayed M, Bernatsky S, Ramsey-Goldman R, Clarke A, Gordon C. Lupus and cancer. Lupus. 209; 18(6); 479-85.
  • Research Update: Cancer in Lupus. (Based on presentation by Dr. Sasha Bernatsky at BC Lupus Society Symposium.) 22 Oct. 2005. Available at <http://www.bclupus.org/resources.html>.

Treating Lupus with DHEA

DHEA (dehydroepiandrosterone) is a mild male hormone that is effective in treating some of the symptoms of mild to moderate lupus. Unfortunately, this medication has not been approved by the FDA for the treatment of lupus, but it can be useful for people who experience hair loss (alopecia), joint pain, fatigue, and cognitive dysfunction (e.g., difficulty thinking, memory loss, distractibility, difficulty in multitasking). DHEA can also be effective against osteoporosis.

DHEA does have some side effects, however, which include acne, facial hair growth, oily skin, and excessive sweating. In addition, DHEA can lower the production of HDLs (“good” cholesterol) in some women. It can also increase estrogen levels in postmenopausal women, so it is important for women in this category to obtain routine cancer surveillance (mammograms, PAP smears).

It is very important that you do not take DHEA unless you are prescribed the medication by your doctor. DHEA is often sold as a dietary supplement, but these over-the-counter tablets are not regulated and may be ineffective. You must not treat yourself with DHEA unless it is prescribed to you by your doctor. If your doctor does decide upon DHEA as part of your lupus treatment, you will need to obtain it from a compounding pharmacy. The dosage given for the treatment of certain lupus symptoms is 200 milligrams.

Who should avoid taking DHEA?

  • Men with lupus should not take DHEA.
  • Post-menopausal women may take this medication but should be carefully monitored.
  • Women who are pregnant, may become pregnant, or are nursing should not take this medication.
  • Do not take this medication if have any type of cancer that could be influenced by hormones or have a family history or other risk factors for cancer.
  • Lastly, talk to your doctor if you are already taking hormone therapy.

Treating Lupus with NSAIDs

(Non-steroidal anti-inflammatory drugs)

  • Celecoxib (Celebrex)
  • Diflunisal (Dolobid)
  • Etodolac (Lodine)
  • Ibuprofen (Advil, Motrin, Rufen)
  • Indomethacin (Indocin)
  • Meloxicam (Mobic)
  • Midrin
  • Nabumetrone (Relafin)
  • Naproxen (Naprosyn, Alleve)
  • Oxaprozin (Daypro, Duraprox)
  • Piroxicam (Feldene)
  • Salsalate (Disalcid)
  • Sulindac (Clinoril)
  • Tolmetin (Tolectin)
  • Trilisate
  • Ketoprofen (Orudis, Oruvail)

What are NSAIDs?

NSAID stands for “non-steroidal anti-inflammatory drug.” These anti-inflammatory medications relieve some lupus symptoms by reducing the inflammation responsible for the stiffness and discomfort in your muscle, joints, and other tissues. NSAIDs are milder than many other lupus drugs and may be taken either alone to treat a mild flare or in combination with other medications. NSAIDs come in both prescription and over-the-counter forms, but you should always talk to your doctor before taking any over-the-counter medication. There are many NSAIDs currently on the market; common examples include ibuprofen (Advil, Motrin), naproxen (Naprosyn, Alleve), etodolac (Lodine), celecoxib (Celebrex), and meloxicam (Mobic). Everyone responds differently to different medications, so you and your doctor should work together to find the most effective NSAID for your lupus symptoms.

How do NSAIDs work?

NSAIDs work at a chemical level by blocking the formation of molecules in your body called prostaglandins. Prostaglandins are involved in both your body’s normal “maintenance” and your body’s inflammatory response. These prostaglandins are controlled by enzymes—proteins that help to bring about chemical changes in your body—called Cox-1 and Cox-2. Specifically, Cox-1 controls the formation of the prostaglandins involved in the normal function of many of your body’s organs. Cox-2 controls the formation of the prostaglandins involved in your body’s inflammatory response. So, by stopping your body from making prostaglandins, NSAIDs allow you to experience less swelling and less pain.

Most NSAIDs block both Cox-1 and Cox-2 enzymes. Since the Cox-1 enzyme helps some of your organ systems to function normally, you may experience some side effects when taking NSAIDs, such as upset stomach. [A full list of possible side effects can be found below.] However, some newer NSAIDs, such as celecoxib (Celebrex), block only the Cox-2 enzyme, which may help your body to avoid some of the more traditional side effects. A Cox-2 inhibitor is sometimes called a “selective” inhibitor. Your doctor will help you to decide which type of NSAID works best to treat your lupus symptoms, while minimizing the possible side effects.

What side effects can occur from taking NSAIDs?

NSAIDs can cause certain side effects. These side effects can be similar to symptoms of increased lupus, so it is important to notify your doctor if they occur. Most side effects will go away once the drug is stopped. Some side effects will only be apparent from your blood tests, so it is important to get regular complete blood counts (CBCs) every 3-4 months, including tests of your liver and kidney function.

Potential side effects of NSAIDs include:

  • Upset Stomach
  • Headache
  • Easy bruising
  • High blood pressure
  • Fluid retention
  • Dyspepsia (gnawing or burning pain in the pit of your stomach, sometimes with bloating)
  • Gastritis (stomach inflammation) or gastric ulcers may occur, causing either hidden or apparent bleeding. This blood loss may lead to anemia.
  • Increased risk of heart attack or stroke.
  • Effects on blood platelets, cells that help your blood to clot normally – Most NSAIDs have some effect on blood platelets. When platelet function is reduced, it takes longer for your blood to clot. While this effect can be bad for some, it can be beneficial for others. In fact, aspirin is often prescribed to reduce the risk of blood clots in people who have antiphospholipid antibodies. However, it is important that you speak to your doctor before taking any NSAIDs if you are on low-dose aspirin therapy, since certain NSAIDs such as ibuprofen (Advil, Motrin, Rufen) can interfere with the effectiveness of this treatment. Selective inhibitors (Celebrex) do not affect platelets.
  • If you already have blood pressure or kidney problems, NSAIDs may worsen kidney function. Fluid retention or further elevation in blood pressure may occur. Reduced kidney function can occur with either Cox-1 or Cox-2 inhibitors. If you have lupus nephritis, you and your doctor should closely supervise your use of NSAIDs to reduce the potential for further harm to your kidneys.
  • Occasionally lupus patients may experience elevations in their liver enzyme blood tests, suggesting a mild liver inflammation (hepatitis). Usually this does not mean that the medication must be stopped, but liver tests should be performed on a regular basis.
  • Worsening of symptoms in people with asthma or inflammatory bowel disease.
  • Severe headache with neck stiffness may occur exclusively in people with lupus, usually only with ibuprofen.
  • Skin rashes can occur, either in the form of hives or a light- or sun-sensitive rash. Sometimes these rashes can mimic a flare of your lupus, so it is important you speak with your doctor if you experience this reaction. This reaction is more common with piroxicam (Feldene)

What if NSAIDs irritate my stomach?

Always take NSAIDs with food to help protect your stomach from irritation. If you experience stomach pain or other side effects when taking NSAIDs, your doctor may prescribe medications to control these symptoms. Medications such as cimetidine (Tagamet), ranitidine (Zantac), omeprazole (Prilosec), and lansoprazole (Prevacid) help your stomach from producing acid. Misoprostol (Cytotec) may help to maintain the protective lining of your stomach wall. It is important to remember that you may experience stomach irritation from one NSAID but not another. Speak with your doctor if you are experiencing stomach pain. There could be another drug that works better for you.

What should I keep in mind if I have been taking NSAIDs for a long time?

If you have been undergoing long term NSAID therapy, you should have your blood count measured periodically (a test called a CBC) to make sure you are not experiencing any hidden gastric bleeding. This type of bleeding can cause anemia, which affects your blood’s ability to clot and can lead to easy bruising.

Limit your alcohol intake while taking NSAID medications, since alcohol can irritate the stomach. People taking NSAID medications should not smoke. In fact, individuals with lupus should not smoke at all due to their increased risk of cardiovascular disease (the number one cause of death in lupus patients).

Lastly, it is important that you talk to your doctor about any other medications—prescription and over-the-counter drugs, vitamins, and supplements—that you may be taking.

Can I take NSAIDs if I am pregnant or thinking of having a baby?

NSAIDs are forbidden during pregnancy, even while trying to conceive.

Talk to your doctor if you:

  • Have decreased kidney or liver function, or an uncontrolled or undiagnosed liver problem (for example, hepatitis)
  • Have ever had an ulcer, gastritis, or bleeding from the intestinal tract
  • Take blood thinners (anticoagulants) like Coumadin, heparin, aspirin, or Plavix
  • Take steroids such as prednisone
  • Have a low platelet count
  • Have Crohn’s disease or ulcerative colitis
  • Have a history of stroke, heart attack, hypertension, or congestive heart failure
  • Have asthma or chronic lung disease
  • Are allergic to aspirin or any other NSAIDs
  • Have nasal polyps
  • Have ‘reflux disease,’ indigestion, or hiatal hernia
  • Are pregnant, may become pregnant, or are breast feeding
  • Drink more than 7 alcoholic drinks per week or more than 1 per day
  • Are over 65
  • Do not accept blood products due to religious or other reasons.

Get emergency help right away if you experience any of the following symptoms:

  • Chest pain
  • Shortness of breath
  • Weakness in one part of the body
  • Slurred speech.
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