It is because of you that we are able to improve the quality of life and outcomes of all lupus patients. We are hopeful that with increased research efforts, a cure for the disease is possible during the next decade. It is very important to us that we keep our participants informed of the results of many of our research studies. The research studies presented in this newsletter have not been completed and we have no definitive results to report. STAY TUNED... We'll try to highlight some of the major presentations of new research in SLE from our upcoming American College of Rheumatology National Meeting in October, 2000 in our next newsletter. This will include results from the original study from LaJolla Pharmaceutical examining LJP-394, an investigational drug in lupus kidney disease. The results were encouraging enough to lead to a potential future research study (PEARL) described in this issue of our newsletter.

leg and lung. This research study is supported by the National Institute of Health. There is only one evaluation required including a physical examination by Dr. Manzi or by one of our other University physicians, laboratory testing and several questionnaires asking about risk factors, and previous history of any clotting events. We would like to enroll 500 women and we have over 300 women that are currently participating.

After menopause, women may have hot flashes, mood swings, increased risk of osteoporosis (soft bones) and coronary artery disease (clogged blood vessels of the heart.) Hormone replacement therapy may be even more important to women with SLE since the risk of premature osteoporosis and coronary artery disease is greater than most women without SLE. However there is a concern about the effects of hormones on SLE disease activity and the possible increased risk of clotting events. The University of Pittsburgh, Division of Rheumatology, is one of many centers across the country conducting a research study to determine the safety of hormones(estrogen replacement therapy) in lupus. This research study is sponsored by the National Institute of Health. We have 15 women that have entered at the University of Pittsburgh. This is a one year

research study which consists of 8 visits to the General Clinical Research Center at Montefiore Hospital. At each visti you will have a physical exam by Dr. Manzi, lab testing and you will complete a short questionnaire regarding your health. To be eligible, you must be menopausal (surgically or non surgically),and NOT on estrogen replacement therapy. You will not be charged for the visit or laboratory testing. You will be reimbursed for your parking expenses. This is a very important study for women with SLE and your participation is welcome. If you would like more information or feel that you are eligible to participate please call

Many women with SLE will report that their lupus symptoms get worse at different times during the month. Changes in lupus symptoms could be due to changing hormone levels. The University of Pittsburgh, Division of Rheumatology is conducting a research study sponsored by the National Institute of Health, (NIH). This research study is examining the menstrual cycle and lupus disease activity to determine whether hormone levels (estrogen and progesterone) are different in women with SLE compared to women without lupus. To be eligible, you must still be menstruating, between the ages of 18-40 and NOT on birth control. You need not have any changes in your lupus symptoms with your menstrual cycle to enter. All are welcome. There are 2 visits to the General Clinical Research Center, the first visit you will

have a physical examiniation by Dr. Manzi including blood tests. The second visit is for a urine sample. Participants are required to provide saliva samples (to determine hormone levels) over 3 menstrual cycles. This can be done easily at home. All participants are paid $100.00 and parking expenses will be provided. If you have a friend, that is within 5 years of your age that would like to participate as a control they will also be eligible for $100.00. We would like to enroll 100 women, and to date we have entered 56 women. If you think you are eligible and need more information please call

Pain, fatigue, and the unpredictability of SLE symptoms can have a major impact on health and quality of life. The University of Pittsburgh, Rheumatology Division is conducting a research study to determine wheter pain and stress management training help people with SLE to reduce pain, distress, and disease activity. This study is funded by the National Arthritis Foundation. To be eligible for the study you must have SLE, 18-70 years of age, and experience any kind of pain (not necessarily from lupus) several times each week. All participants will have an initial physical exam by Dr. Manzi and 2 follow-up

exams by Dr. Manzi at 3 and 9 months. Some participants will be randomly assigned to attend 6 weekly treatment sessions, and others will have the physical examiniations only. You will be reimbursed for your parking and will receive an additional $20 for each of the 2 follow-up examinations. If you want more information or feel you qualify please call

There are approximately 700 SLE patients from 3 nations (United States, United Kingdom, and Canada) participating in this study which has been in progress since 1996. It is designed to examine the differences in health care utilization, health status and patient satisfaction in these 3 nations. This is the final phase of this research study.

We want to remind those of you currently participating who have not yet returned your last questionnaires to please do so. Everyone's full participation is very important for the success of the study. If you have misplaced them, please let us know your name and phone number.

Lupus kidney disease is associated with the overproduction of antibodies to native DNA (anti dsDNA antibodies). These antibodies can deposit in the kidneys and are thought to be responsible for the development of inflammation and ultimately kidney disease in SLE. This future research study is for those SLE patients that have a history of kidney disease.

The investigational drug, LJP394, has been shown in previous studies to lower the levels of these anti dsDNA antibodies. This future research study is currently under review at the Institutional Review Board. We'll keep you informed.

Drs. Susan Manzi and Joseph Ahearn have joined forces to fight the battle against Lupus. Dr. Ahearn joined this effort recently after being recruited from Johns Hopkins School of Medicine because of his expertise in the field of complement biology and immunology, areas critical to the understanding of lupus. His research focuses on the genetic origins of the disease and a vaccine to prevent lupus. He and Dr. Manzi have organized a Lupus Awareness Program designed to introduce children from local middle schools to lupus.

The program consists of a slide show describing the disease; patient interviews and laboratgory "hands on" stations demonstrating the technologies used to study lupus.Drs. Manzi and Ahearn are committed to teaching and training young adults in both clinical and basic lupus research. They continue to travel locally, nationally and internationally to lecture about lupus and to present their research. We'll keep you posted about their progress.