Be sure to mark your calendar to attend one or all of these educational programs. Call 412-647-UPMC (8762) for more information and to register.

The Montefiore Spring patient program:
Fibromyalgia: What's New in Diagnosis and Treatment
LHAS Auditorium, UPMC Montefiore Hospital, 1-4 PM Friday, May 10, 2002

The St. Margaret patient program:
New Medical and Surgical Approaches to Arthritis Care
UPMC St. Margaret Hospital, Saturday, April 27, 2002

The Shadyside patient program:
Arthritis Update: What's New in Treatment UPMC Shadyside Hospital, tentatively scheduled for mid-May.

The main purpose of the UPMC Arthritis Network Newsletter is to provide our patients with information about arthritis and other related conditions such as lupus, vasculitis, etc. Our goal is to help you understand these illnesses, to describe how we as rheumatologists and other related health care professionals look at them, and to discuss the means available to tackle these problems. It is very important for us at the Arthritis Network to hear from you so we can better understand your needs. Here are a few suggestions. Please notify us about topics that you like to read about, such as a specific disease entity or questions related to medications. We welcome feedback about the newsletter and personal stories that you would like to share with others. Write us at the above address. We hope that the Newsletter is helpful in your fight against arthritis.

Since the time of our last publication two new medications have become available for the treatment of arthritis:

1. Bextra (valdecoxib) is a nonsteroidal anti-inflammatory drug that is FDA approved for the treatment of osteoarthritis and rheumatoid arthritis in adults. It can also be used for the treatment of menstrual pain. Bextra is a Cox-2 inhibitor, which is a new class of nonsteroidal anti-inflammatories. These drugs, in general, are considered safer than the traditional nonsteroidal anti-inflammatory drugs with regard to the gastrointestinal tract, i.e. causes fewer stomach ulcers and less intestinal bleeding. Other medications in this class are Celebrex and Vioxx. Bextra is available in 10 mg tablets and is taken once a day. Side effects have been minimal in the initial studies, but as always we have to be cautious with the use of any new drug.

2. Kineret (anakinra) is the first and only available blocker of interleukin-1 (IL-1). IL-1 is a substance that is believed to contribute to joint inflammation and cartilage damage. Kineret is FDA approved for the treatment of rheumatoid arthritis. Preliminary studies seems to be very encouraging. Kineret has to be given by injection under the skin on a daily basis, but most patients find it easy to use. Side effects can include swelling at the injection site, which is usually minor, but more serious side effects such as infections have also been reported. Because of its cost, pre-approval from your insurance company is required.

The release of these 2 medications is another good sign that greater emphasis is being placed on arthritis treatments by pharmaceutical companies today.

Ataç Türkay, M.D. Ph.D., is an Assistant Professor of Medicine and researcher at the University of Pittsburgh School of Medicine, Division of Rheumatology and Clinical Immunology. He is board certified in Internal Medicine and Rheumatology and sees patients at the University Arthritis Center. His research interests include gene therapy for arthritis and the role of blood clotting systems in rheumatological disorders. Dr. Türkay moved here from the University of Michigan, where he completed both a Rheumatology fellowship and a Ph.D. program in Human Genetics, and served on faculty. Dr. Türkay is originally from Ankara, Turkey, where he graduated from Ankara University Medical School.

Tharaknath Rao, M.D., Assistant Professor of Medicine at the University of Pittsburgh School of Medicine, Division of Rheumatology and Clinical Immunology, also came here from the University of Michigan, where he completed his Rheumatology fellowship and served as a faculty member. Dr. Rao graduated from Stanley Medical College in Madras, India. He is board certified in Internal Medicine and Rheumatology. Dr. Rao sees patients at the University Arthritis Center, the VA Medical Center and serves as Co-Director of the Infusion Suite at Magee Women’s Hospital. Dr. Rao has research interests in ankylosing spondylitis, psoriatic arthritis and related conditions.

Timothy M. Wright, M.D. has relocated to Ann Arbor, MI, where he is now in the Research and Development Department of Pfizer Pharmaceuticals Company. Dr. Wright served as Chairman of the UPMC Arthritis Network Executive Committee, and was Director of the University of Pittsburgh Arthritis Institute and Chief of the Division of Rheumatology and Clinical Immunology at the University of Pittsburgh School of Medicine from 1995 - 2001. We wish him well in his new position.

Fifty-two individuals with osteoarthritis who had undergone knee replacement surgery for the first time participated in the study. One-half of the participants had also undergone knee revision surgery. We interviewed the participants about their physical activities since having their knee replaced. Because the term “physical activity” refers to any bodily movement that results in energy expenditure, the study focused on a wide range of activities including work-related tasks, sports, leisure activities, and daily activities such as housecleaning, childcare, and shopping.

We found that individuals who were more active after knee replacement surgery did not have a greater risk of needing revision surgery than those who were less active after surgery. Individuals undergoing knee replacement surgery should be encouraged to remain active after such surgery. Physical activity is necessary for maintaining health and reduces the risk of certain chronic conditions including heart disease, high blood pressure, and diabetes. In addition, physical activity can improve muscle and bone strength, mental health, and the quality of life. Staying active keeps the muscles and joints around the replaced knee in good working condition. Thus, remaining physically active is important for maintaining physical and mental health after knee replacement surgery. Talk to your physician if you have questions about appropriate activity levels after surgery, or whether a referral to a physical therapist is indicated to assist you with your exercise program.

Dina L. Jones, Ph.D., P.T.

Kathryn Wildy, M.D., a third-year fellow in Rheumatology in the Division of Rheumatology and Clinical Immunology at the University of Pittsburgh, has received a prestigious New Investigator Award from the American College of Rheumatology. This two-year award will support her participation in a multi-center, long-term project in pain due to knee osteoarthritis using magnetic resonance imaging (MRI) technology. Dr. Wildy received her MD from the University of Washington Medical School and completed her Internal Medicine training at the University of Rochester, NY before beginning her fellowship here in 1999.

Terence W. Starz, M.D., Clinical Professor of Medicine, was awarded the Pennsylvania Occupational Therapy Association Award of Appreciation in recognition of his support for occupational therapy education and research. Dr. Starz has research interests in osteoarthritis of the knee and fibromyalgia. He presented a number of abstracts on his work at the 2001 annual meeting of the American College of Rheumatology.

250 Tips for Making Life with Arthritis Easier. Shelley Peterman Schwarz, Longstreet Press, 1997.

The Lupus Handbook for Women: Up-To-Date Information on Understanding and Managing the Disease Which Affects 1 in 500 Women. Dr. Robin J. Dibner and Carol Colman, Fireside, 1994.

Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual. Drs. Devin J. Starlanyl and Mary Ellen Copeland, New Harbinger, 1996.

As you know, the UPMC Arthritis Network consists of not only your doctor’s office, but also seven other sites around the greater Pittsburgh area, at which physicians from the University Rheumatology Associates, Arthritis and Internal Medicine Associates, and the Margolis Rheumatology Associates see patients. Under the guidance of Registry Director Thomas A. Medsger, Jr., MD, these doctors have developed a Registry to aid in their arthritis-related research. The Registry is supported by a grant from the St. Margaret Memorial Hospital Foundation. The Registry recruits patients diagnosed with specific rheumatic disorders who are interested in participating in research studies. This decreases the amount of time that doctors have to spend searching for research subjects, which increases the time that they can spend with patients.

The Registry provides potential participants for many University of Pittsburgh/UPMC arthritis research projects. Several researchers are testing strategies to improve a rheumatoid arthritis and osteoarthritis patient’s ability to comply with treatment. An investigation is being conducted to determine if cardiovascular disease is more common in women with rheumatoid arthritis. Exercises are being developed to aid in the rehabilitation of knee osteoarthritis. Several popular dietary supplements that are thought to decrease osteoarthritis pain are going through clinical trials necessary for FDA approval. Preliminary interest has been expressed in future studies of fibromyalgia and gout. One of the best ways to learn about studies like these is to join the Registry, which publishes its own newsletter for members.

Why participate in research studies? If no one was willing to be the first to try new things, there would never be new things. What if the Wright brothers or Chuck Yeager were afraid to take that first test flight? Imagine how many children would die of polio each year, or contract measles if no one had stepped up and participated in the early research efforts of Jonas Salk here in Pittsburgh. What if Christopher Columbus or Leif Eriksson were not willing to find out if the world was truly round? What if no one wanted to be the first person with an artificial knee? Sure, there are risks, but the worst has already happened... you have a disease for which there is no cure. The good news is that there are drugs that ease the pain of arthritis, and treatments that have been proven to be successful. Without clinical trials, NSAIDs and pain relievers like Tylenol wouldn’t even be on the market. Think about all of the advances that would never have been possible if people like yourself were unwilling to contribute.

The Registry is currently enrolling anyone diagnosed with rheumatoid arthritis, osteoarthritis, fibromyalgia, osteoporosis, or gout. Other diseases such as lupus and polymyositis/ dermatomyositis will be added to the Registry in the coming years, depending on the demand for research subjects. The Registry is not limited to those who receive their medical treatment from UPMC, so tell your friends about us. If you are interested in joining the Registry, please contact Jennifer Jablon, the Registry Coordinator at (412) 383-8674 or by e-mail at jablonj@msx.dept-med.pitt.edu. The Registry would love to have your help in searching for causes and cures for the many different rheumatic disorders.

Jennifer Jablon

It’s bad enough to have pain somewhere in your body. But imagine having pain everywhere. This is the plight of people with fibromyalgia, a disease characterized by chronic, widespread muscle pain, usually coupled with fatigue. Sleep disturbances, irritable bowel syndrome, headache, pain in joints, numbness in hands or feet, difficulty concentrating, anxiety, or depression may also be present. Generalized pain in muscles and joints throughout the body is a challenge to doctors and patients alike. However, medical science is now gaining insight into the "mechanics" of pain - how the body processes pain and how mind-body connections may affect the experience of pain.

A diagnosis at last
In the past, when routine physical examination and testing showed nothing abnormal, the symptoms may have been diagnosed as "psychogenic rheumatism." Patients often felt the doctor was saying their pain was "all in your head."

Today, patients with these symptoms are more likely to receive a different diagnosis. A word not heard 20 years ago, fibromyalgia is a medical term rapidly becoming recognized by the general public. The condition has been known for a long time; but the criteria for diagnosing fibromyalgia was not established until 1990. Eighteen sites distributed symmetrically in the neck, shoulders, elbows, hips, and knees have been identified as possible "tender points" of fibromyalgia; if they are pressed these sites are tender in affected patients but not in unaffected persons. Pain may begin in one area of the body and spread over a period of time. Widespread pain in combination with tenderness in a majority of the 18 points lasting longer than three months is typical in fibromyalgia. The disease is not life-threatening and does not lead to joint inflammation or deformity.

The mind-body connection
Although the cause of fibromyalgia is not known, evidence indicates a biologic basis. Researchers at UPMC are studying pain "pathways" in the body to learn how the body "regulates" pain. They suspect that in fibromyalgia, some of the body’s pain pathways become oversensitive, possibly from a decrease in substances which normally block the appreciation of pain. Research shows that pain, sleep, and emotion are regulated in the same part of the brain. It is significant that most people with fibromyalgia have fatigue, and many experience sleep disturbance and mood changes. Of the 3 million to 6 million people in the U.S. estimated to suffer from fibromyalgia, 80 percent are women. This suggests a hormonal influence in the disease. People with fibromyalgia also have reduced muscle tone, pointing to a process of muscle deconditioning.

Current thinking on fibromyalgia does not, however, rule out psychological factors. Scientists studying the mind-body connection find an overlapping of the physical and the psychological. Stress of either kind can trigger chemical reactions in the body.

The fatigue factor
Ninety percent of fibromyalgia patients experience fatigue. Fatigue is excessive tiredness or exhaustion that affects a person’s ability to function in daily life. Fatigue is perplexing. Its mechanism is not understood. For instance, no area of the brain is known to be a "fatigue center".

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Chronic fatigue syndrome (CFS) is a condition that has some symptoms in common with fibromyalgia. CFS is named for its major symptom of fatigue. Muscle and joint aches, headache, tender lymph nodes, sore throat, difficulty concentrating and sleeping, and excessive tiredness after exertion may accompany the fatigue. More than ten years of investigating fatigue have not uncovered an infection or an immune deficiency as a cause of fatigue. As far as medical science knows, fatigue does not exist alone without other conditions. CFS is probably a group of symptoms, not a single disease.

Partners in treatment
Fibromyalgia affects a person’s ability to perform in everyday life and has emotional repercussions. Because individuals may process pain differently and the intensity and combination of symptoms vary from person to person, treatment for fibromyalgia must be tailored to each patient. At UPMC, doctors have developed a special program dedicated to treating fibromyalgia. Treatment can include medication, exercise, physical therapy, and coping skills, such as pain control and stress management techniques. I believe that in the treatment of fibromyalgia, the doctor functions as a ‘navigator’, assisting the patient. The patient must ‘take the controls’ by self-managing the disease. Patients must learn their pain threshold, how to pace themselves, and how to avoid the things that trigger pain. Treatment can be effective, but takes time.

The Hopwood Library is located on the first floor of Shadyside Hospital and is a marvelous resource for patients. The Library is a joint project between the Health Sciences Library System of the University of Pittsburgh, UPMC Shadyside, the Hopwood Foundation, the Shadyside Hospital Foundation, and the Beckwith Institute for Innovation in Patient Care. It shares space with the James Frazer Hillman Health Sciences Library for health care professionals at Shadyside Hospital.

The Hopwood Library is open to UPMC patients and families Monday through Friday from 8:00 am to 8:00 pm, and Sunday noon to 6:00 pm. It contains books, pamphlets and videos in print and electronic formats on health-related topics in non-technical language. Many publications are in easy to read English which includes the essential information pertaining to the diagnosis and treatment of the condition. Most materials do not circulate. A coin-operated photocopier is available.

The Hopwood Library’s collection is included in the University of Pittsburgh’s online library catalog, PITTCAT. Personal assistance from a library staff member is available onsite. Limited phone assistance can be obtained at 412-623-2620.

reprinted from www.hsls.pitt.edu