1 Elizabeth Stevens Mrs.

Motley 4B Honors English 10 28 May 2004 Dying to Live: Harsh Treatment for a Cruel Disease Japel Filiaci, a New York attorney, spoke at the conference in 2002 of blisters that left her clothes bloody and pain that made her scream. She was diagnosed [with lupus] at age twenty-six. As the disease worsened, she suffered joint and muscle pain. Because blisters on her feet were so bad, she sometimes wore bathroom slippers to court. Her hair fell out- perhaps because of the drugs. Steroids helped, but her doctor limited her intake because of such risks as weight gain and bone thinning (Matthews A1). Japel Filiaci is just one of approximately 1.4 million Americans who are known to suffer from the disease lupus (Gettman). Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys (Definition). Between ten and fifteen percent of lupus patients die prematurely from complications with the disease each year (Gettman). Those who continue to live with lupus face the possibility of osteoporosis, anemia, internal bleeding, cataracts, an increased risk of cancer, and other side effects. Medications with harsh side effects are still being used in the treatment of lupus because there is no other way to treat and try to control the disease. Brutal medications are still being used because the Food and Drug Administration (FDA) has not approved a new drug for the treatment of lupus in forty years. This is

2 because drug companies have an extraordinarily difficult task in trying to prove to the FDA that a potential drug is actually working. The difficulty comes from the fact that no two cases of lupus are the same. Patients symptoms of the disease vary widely, which causes the reaction to the potential drug to differ from patient to patient. Also, the FDA has provided drug companies with very few guidelines to follow in the development of a drug. According to David Stump, the executive vice president at Human Genome Science, Inc., Clarity in the regulatory pathway [has been a] missing link. You get the clarity by seeing how the FDA handles the review and approval of other products, and there havent been any (Matthews A1). The FDA wants to wait until it receives a consensus from a group of specialists before it creates a list of guidelines. The only problem is that lupus specialists tend to disagree as the symptoms of lupus vary so widely, as with many rare diseases (Matthews A1). The side effects of these medications vary widely, depending on what kind of medication is taken. The disease, lupus, causes fever, swollen joints, rashes, sores, loss of hair, and sensitivity to sunlight (Lockshin 530). These symptoms can be intensified by drugs. Doc had explained the side effects of the meds, but nothing like the real issues. Every time LaTerrica combed her hair, all of her long, black, straight, silky hair would fall out by the patches (Allen). Medication used in the treatment of lupus is generally divided into four categories, Non-Steroidal Anti-Inflammatory Drugs (NSAIDs), Corticosteroids (steroids), Cytotoxins (chemotherapy), and Anti-Malarials. Each group has its own set of side effects, some not as severe as others. Overall, the most common side effects are upset stomach, increased risk of cancer, osteoporosis, weight gain, gastrointestinal, nausea, easy bruising, high blood pressure, drop in white blood cell

3 count resulting in increased susceptibility to infection, drop in platelet count, and ulcers (Lahita). Long-term use of any of these kinds of drugs adds a whole new list of possible side effects that differs within each category. Also, a combination of side effects from different medications can cause new medical problems. This is the case with Lynnette Southwood, a thirty-four year old female who has lupus for twelve years. I have osteoporosis and have had both my hips replaced [because of the drugs]. Basically [the side effects] would be gastrointestinal, the nausea, the bone loss, and I would even attribute moodiness to the drugsbecause of the Prednisone I have issues with my teeth and with my gums. About a year ago I was having problems with my legs againI would have to have my hips recemented and my knees needed to be replaced. These problems were a result of taking several different medications with different side effects. The types of drugs with the mildest side effects are NSAIDs. Lupus causes swelling in the joints causing joint and muscle pain. These symptoms are treated with NSAIDs (Lahita). While these drugs reduce the inflammation, they can also cause upset stomach, headache, drowsiness, easy bruising, high blood pressure, fluid retention, and dyspepsia. Long-term use results in much more severe side effects. These include gastritis and gastric ulcers. These more severe side effects can cause obvious or hidden bleeding that can lead to anemia. Common NSAIDs include Motrin, Advil, Voltaren, Alleve, Daypro, Ibuprofen, Lodine, Celebrex, and Vioxx (Aranow and Weinstein). Acetaminophen (Tylenol) is an alternative pain killer, but it is not nearly as effective at suppressing inflammation, though it causes less stomach

4 irritation (Lahita). Corticosteroids are also used to reduce inflammation, but they also have a lot more side effects. Steroids suppress the immune system as well as reducing swelling. This is important because people with lupus have an over-active immune system. Cortisone, Prednisone, hydrocortisone, Medrol, and Decadron are all common steroids. Prednisone can lead to anemia by irritating the stomach and causing internal bleeding (Schwartz). Steroids can cause changes in appearance. A person taking steroids can develop a round or moon-shaped face or acne. Steroids may also cause an increased appetite resulting in weight gain, easy bruising, and redistribution of fat resulting in a swollen face and abdomen, but thin arms and legs (Katz, Steroids). [Timberly Williams] complications from lupus included a 100-pound weight gain from high doses of steroids, loss of vision, pseudo tumors, migraines, weakened bones, hearing loss, grapefruit sized abscesses in both breasts, numerous infections and psychoses (Jenison). Prednisone can result in aggravated diabetes, glaucoma, high blood pressure, and increase in cholesterol levels. In children, steroids can suppress growth. Long-term side effects consist of cataracts, muscle weakness, avascular necrosis of the bone, and osteoporosis. If osteoporosis results, it can lead to bone fractures, especially of the vertebrae, causing intense pain. Steroids may eventually lead to arteriosclerosis, the narrowing of the blood vessels by cholesterol deposits. Because steroids cause so many additional medical problems, cytotoxins are given in order to reduce the amount of steroids given to a patient (Katz, Imuran). Just like steroids, cytotoxic medicines are used to suppress the immune system and inflammation. These drugs destroy cells that grow at a rapid rate, which helps to

5 suppress an over-active immune system. Anemia, low white blood cell count, and the increased risk of infection are all common side effects of cytotoxins. The use of cytotoxins can also predispose a patient to develop cancer. The medication may also reduce the red blood cell and platelet count, cause hair loss, sterility, and increase the risk of developing lymphoma. Cytoxan, a type of cytotoxin, can cause upset stomach, increased risk of leukemia, bladder cancer, tumors, temporary or permanent sterility, and bleeding in the bladder. Cytoxan also predisposes a patient to develop shingles, unusual infections, and hair loss. Imuran produces far fewer side effects than Cytoxan, but is less potent and far less effective. Imuran may cause the white blood cell, platelet or red blood cell count to decrease. It also increases the risk of developing lymphoma, which is a cancer involving the lymph glands, liver, and spleen. Methotrexate can cause liver disease and lung reactions and may cause sensitivity to sun (Katz, Imuran). Cytotoxic drugs, harsh though they be, are some of the most effective in battling lupus. The last, and probably the least effective medicines used, are anti-malarials. They are given to treat skin and joint symptoms of lupus. It can take months for these drugs to take effect. Anti-malarials include Aralen, Plaquenil, quinine, and chloroquinine. Aralen and quinine can affect the eyes, damaging the retina in the back of the eye. Plaquenil can also damage the retina, but not as severely. Retinal damage caused by Plaquenil, if found and treated early, can be reversed. Retinal damage caused by Aralen and quinine, on the other hand, is irreversible. Anti-malarials, as a whole, can result in rashes, pigmentary changes, hair loss, drying of the skin, stomach upset, loss of appetite, abdominal bloating, cramps, nausea, vomiting, weakness, and dizziness (Gluck). The treatment of lupus is a harsh endeavor at controlling a disease that is just as brutal.

6 A solution for this problem is not very complicated. The FDA needs to create a set of guidelines for drug companies to refer to when working on a potential drug for lupus. Also, drug companies need to develop a drug that takes all the current medications purposes and does them all with the least possible side effects. An alternative solution is to develop new drugs that have far fewer and less severe side effects. The best solution for the problem would be to develop a cure for lupus, but, as with most rare diseases, there is no cure. Doctors can only try to make a patient as comfortable as possible, which reinforces the need for new drugs. Lupus is a complicated disease that has given the medical world another challenge. With no alternative way of treating lupus, medication with brutal side effects is still in use. Lupus is a devastating disease that can tear a persons life apart. The men and women who live each day with this disease have to be some of the most courageous and admirable people on earth today.

Works Cited Allen, Jenelle. My Scare as the Mother of a Daughter with a Chronic Illness. Colorado Health Site. 25 May 2004 <http://www.coloradohealthsite.org>. Aranow, Cynthia and Arthur Weinstein. Non-Steroidal Anti-Inflammatory Drugs (NSAIDs). Lupus Foundation of America. 12 May 2004 <http://www.lupus.org> Definition. Lupus Foundation of America. 26 May 2004 <http://www.lupus.org>. Gettman, Scott. Prevalence of Lupus. Colorado Health Site. 17 May 2004 <http://www.coloradohealthsite.org>. Gluck, Oscar. Anti-Malarials in the Treatment of Lupus. Lupus Foundation of Illinois. 12 May 2004 <http://www.lupusil.org>. Jenison, Bill. An Interrupted Journey. Lupus Foundation of Minnesota. 26 May 2004 <http://www.lupusmn.org>. Katz, Robert S. Imuran, Cytoxan and Related Drugs. Lupus Foundation of Illinois. 12 May 2004 <http://www.lupusil.org>. Katz, Robert S. Steroids Used in the Treatment of Lupus. Lupus Foundation of Illinois. 12 May 2004 <http://www.lupusil.org>. Lahita, Robert G. Treatment of Lupus. Lupus Foundation of Illinois. 12 May 2004 <http://www.lupusil.org>. Lockshin, Michael D. Lupus. The World Book Encyclopedia. 1990 ed. Matthews, Anna Wilde. Question Hampers Lupus Drugs: What Does Better Mean? Wall Street Journal. 15 April 2004, Eastern ed.: A1.

8 Schwartz, Robert S. Blood Disorders in Systemic Lupus Erythematosus. Lupus Foundation of Illinois. 12 May 2004 <http://www.lupusil.org>. Southwood, Lynnette. Lynnette Southwood: Living with Lupus through Courage and Grace. Colorado Health Site. 3 Nov. 1999 <http://www.coloradohealthsite.org>.