ADVANCE PSORIASIS. PSORIATIC ARTHRITIS BASICS page 4. ARTHRITIS RESEARCHERS take notice page 19

A magazine connecting the psoriasis and psoriatic arthritis community PSORIASIS SPECIAL ISSUE: Psoriatic arthritis PSORIATIC ARTHRITIS BASICS page 4...
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A magazine connecting the psoriasis and psoriatic arthritis community

PSORIASIS SPECIAL ISSUE: Psoriatic arthritis

PSORIATIC ARTHRITIS BASICS page 4

ARTHRITIS RESEARCHERS take notice page 19

EXERCISE AND PSORIATIC ARTHRITIS Yoga, tai chi and water workouts page 21

CAPITOL HILL DAY 2005 Community, cause —and a contest page 14

Connect. Control. Cure.

ADVANCE Volume 3 : Number 1 January/February 2005

Gail Zimmerman President and CEO [email protected]

Inside the Foundation Dear Member, The 2003 discovery of three genes linked to psoriasis tells us we can unlock the genetic puzzle behind psoriasis and psoriatic arthritis. The scientists and knowledge are there to find the remaining genes and to understand the role they play in causing the symptoms of disease. What is lacking is capital. The National Psoriasis Foundation is committed to raising that capital, through private and federal sources. This year, in future issues of the Psoriasis Advance, you will be reading about our fund-raising efforts to raise private dollars for this important research. On the public side, we are raising the visibility of psoriatic arthritis through this special issue, which features the basics of the disease, along with treatments and coping mechanisms to help empower those diagnosed with it. We are excited to devote many articles in this issue to psoriatic arthritis and will offer more on psoriatic arthritis in future issues of the Psoriasis Advance. We are also raising the visibility of psoriasis and psoriatic arthritis in Congress in order to ultimately secure more federal funding for research. Last year we initiated our first organized initiative, which brought volunteers and Foundation leaders to Capitol Hill to educate lawmakers on the impact of psoriasis and psoriatic arthritis, and the importance of research. We are planning our second event on Capitol Hill for April 10-11. This provides a great opportunity to tell your story and join with others in our community to educate and advocate. Come join us. You, our Members and donors, are part of the soul of this organization—be our face, too! Please read further about this planned event and what we hope to accomplish in this issue of the Psoriasis Advance. Join with us to get the message out!

Gail M. Zimmerman President and CEO [email protected]

Our mission is to improve the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, we promote awareness and understanding, ensure access to treatment and support research that will lead to effective management and, ultimately, a cure.

PSORIASIS

ADVA NC E Volume 3 : Number 1 January/February 2005

Contents FEATURES

NATIONAL PSORIASIS FOUNDATION 6600 SW 92nd Avenue, Suite 300 Portland, Oregon 97223-7195 USA Tel: 503.244.7404, 800.723.9166 Fax: 503.245.0626 E-mail: [email protected] Web site: www.psoriasis.org Executives Leslie Holsinger, Ph.D. Chairman, Board of Trustees Belmont, Calif.

Quit the habit, treat the disease?

page Gentle exercises ease strain, enhance mobility

page

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Gail M. Zimmerman President and CEO Portland, Ore.

ARTICLES Psoriatic arthritis basics

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Editorial Staff

Finding the cure for psoriasis—join the Foundation Board of Trustees

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Paula Fasano, Director of Marketing & Communications Jennifer Lind, Editor/Writer Sharon DeBusk, Copy Editor/Writer Anna Magruder, Graphic Designer Olga Dedulin, Advertising Sales

Links between smoking and drinking and psoriasis

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Capitol Hill Day—youngster educates peers, national leaders

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Take action—deliver a message to Congress

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Research zeroes in on psoriatic arthritis

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Contributing Writer

Swimming to success—water exercise and psoriatic arthritis

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Tara Rolstad

Gentle movement, gentle spirit—tai chi and psoriatic arthritis

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Where limitations turn to flexibility—yoga and psoriatic arthritis

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Medical Editors Gerald G. Krueger, M.D. University of Utah Medical School Salt Lake City, Utah Philip Mease, M.D. Seattle Rheumatology Associates Seattle, Wash.

The National Psoriasis Foundation encourages Members to increase awareness about psoriasis and psoriatic arthritis by educating the public on these diseases. Members can support people who have psoriasis by asking their physicians and health care providers to make patients aware of the Psoriasis Foundation’s educational and support services.

REGULAR COLUMNS Letters

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It Works for Me

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Front Porch

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www.psoriasis.org

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Dr. Tell Me

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Support Groups

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Just4Us

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Consumer Watch

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Advancing the Foundation

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Cover photo: Members Luz Felix-Marquez and her mother Maria. In this special issue of the Psoriasis Advance, we are proud to focus on psoriatic arthritis and will continue to update you about new research and treatments for this disease in upcoming issues.

The Psoriasis Advance is published by the National Psoriasis Foundation. All rights reserved © 2005, National Psoriasis Foundation. The contents of the Advance cannot be reproduced or copied without written permission of the National Psoriasis Foundation, United States of America. Opinions expressed in the Advance do not necessarily reflect the views of the National Psoriasis Foundation. The National Psoriasis Foundation does not test, recommend or endorse products, medications or therapies for the treatment of psoriasis or psoriatic arthritis. The Advance is published as an informational service and is not intended to replace the counsel of a physician. Advertising policy: Ads are accepted for publication if they are relevant to people with psoriasis and psoriatic arthritis and if they meet certain standards. The National Psoriasis Foundation, a charitable 501(c)(3) organization, depends on your tax-deductible donations to support more than 5 million people diagnosed with psoriasis and/or psoriatic arthritis. The Psoriasis Foundation is governed by a volunteer Board of Trustees and is advised on medical issues by a volunteer Medical Board. For more information, or to obtain a copy of the Foundation’s Annual Report, call 800.723.9166.

January/February ISSN 1543-429X

2005

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VOLUNTEER BOARD OF TRUSTEES Leslie Holsinger, Ph.D. Chairman Belmont, Calif. Dale White Vice Chairman Poolesville, Md. Benjamin Isenberg Secretary Lake Oswego, Ore. Jana R. Wessels Treasurer Iowa City, Iowa Mary Beth Cicero Hingham, Mass. Edward Feigeles New York, N.Y. Andrew Henschel North Miami Beach, Fla. Edward Lewis Tiburon, Calif. Pamela Naylor McMinnville, Ore. Edward Reiss San Francisco, Calif. Richard Seiden Los Angeles, Calif. ex officio Gail M. Zimmerman President and CEO Portland, Ore. VOLUNTEER MEDICAL BOARD Mark Lebwohl, M.D. Chairman New York, N.Y. Jerry Bagel, M.D. East Windsor, N.J. Steve Feldman, M.D., Ph.D. Winston-Salem, N.C. Dafna Gladman, M.D., FRCPC Toronto, Ont. Kenneth B. Gordon, M.D. Maywood, Ill. Alice B. Gottlieb, M.D., Ph.D. New Brunswick, N.J. John Y. M. Koo, M.D. San Francisco, Calif. Neil J. Korman, M.D., Ph.D. Cleveland, Ohio Gerald G. Krueger, M.D. Chairman emeritus Salt Lake City, Utah Craig Leonardi, M.D. St. Louis, Mo. Philip Mease, M.D. Seattle, Wash. Warwick L. Morison, M.D. Lutherville, Md. Amy Paller, M.D. Chicago, Ill. David M. Pariser, M.D. Norfolk, Va. Daniel N. Sauder, M.D. Baltimore, Md. Robert Stern, M.D. Boston, Mass. Abby Van Voorhees, M.D. Philadelphia, Pa. Gerald D. Weinstein, M.D. Irvine, Calif. Melodie Young, M.S.N, R.N. Dallas, Texas

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Letters National conference experience persists

Since I returned home from the National Psoriasis Foundation® 2004 National Conference, I’ve been searching for words to express my debt and gratitude to you personally, the National Psoriasis Foundation and all of your sponsors. Time has passed and I finally decided there are no words that can accurately express how your graciousness has blessed me. Without the scholarship that you so kindly gave me, financially I would not have been able to attend. I hope that in the future others will have the same opportunity I did. The conference was absolutely magnificent. I consider myself fairly educated about psoriasis. When I attended the workshops that were offered, I realized how much more I had to learn. My only wish was that I could clone myself so that I could attend all of the workshops. The vendors with booths were awesome. I was able to obtain new information and connect with some other companies that were already familiar to me. If there is ever anything I can do to help you or the Foundation, please let me know. I’ve already started saving for next year’s conference and I hope to bring my husband along as well. J.J., via e-mail Emotional support is appreciated

I am so impressed with all your staff who are getting my mother through this very rough time in her life. We live about 120 miles apart and she is

alone with this problem. My siblings are also in other towns. I have a son with psoriasis but he is 33 and doesn’t have much extra time to work on it right now. I will tell him about your site and encourage him to join you. I just want everyone to know how much I appreciate all their e-mails. This is the most “up” I have heard my mother in a while. You have no idea how much good this Web site is for many people. J.D., via e-mail

SAVE THE DATE! National Psoriasis Foundation® 2005 National Conference

Boston, Mass. August 5-7, 2005 Look for more conference details in upcoming issues of the Psoriasis Advance or www.psoriasis.org Hotel information: Boston Park Plaza Hotel & Towers 64 Arlington St. Boston, Mass. 02116 Tel: 617.426.2000 or 800.225.2008 www.bostonparkplaza.com Room rate: $129/night + tax In order to receive this rate, please indicate that you are with the National Psoriasis Foundation event.

National Psoriasis Foundation® PSORIASIS ADVANCE

Front Porch ARE YOU ON MEDICARE? DO YOU HAVE PSORIATIC ARTHRITIS?

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new law allows up to 50,000 people with Medicare, who have certain serious diseases, access to significant savings on a list of specific drugs. Lowerincome Medicare beneficiaries who qualify can save even more. This is important to the psoriasis community because this new program now covers Enbrel (generic name etanercept) for psoriatic arthritis. Applications will be accepted and eligible beneficiaries enrolled until the program reaches its funding or enrollment limits. To qualify for the Medicare Replacement Drug Demonstration program you must meet the following requirements: 1. You must have Medicare Part A and Part B; 2. Medicare must pay first for your health-care services; 3. You must have a signed document from your doctor stating that you need Enbrel to treat your psoriatic arthritis; 4. You do not have comprehensive outpatient prescription drug coverage from any other insurance; 5. You live in one of the 50 states or the District of Columbia. To learn more, please visit www.medicare.gov or call 866.563.5386, or visit the National Psoriasis Foundation’s Web site at www.psoriasis.org

News affecting our community

COX-2 DRUGS UNDER SCRUTINY

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he COX-2 inhibitor Vioxx (generic name rofecoxib) was “x”-ed out of the arthritis drug arsenal after reports it increased the risk of heart attacks and stroke. COX-2s are a class of NSAIDs (nonsteroidal anti-inflammatory drugs) often prescribed for arthritis patients, including those with psoriatic arthritis, to lower inflammation and pain. In a trial for colon polyp prevention, Vioxx’s maker, Merck, discovered participants had double the risk of a heart attack compared to those taking a placebo. Merck pulled the drug from the market in September 2004 due to safety concerns. COX-2 inhibitors are under increased scrutiny following the Vioxx removal, but not all have been found to have the same side effects. Celebrex (generic name celecoxib), another popular COX-2, has not been found to have the same risk. Others, such as Bextra (generic name valdecoxib) and two new COX-2s not yet on the market, need further study to determine if the risks are specific to Vioxx or if they have broader applicability. If you were prescribed Vioxx, be sure to call your doctor to ask about other treatments that are appropriate for you.

AMEVIVE APPROVED IN CANADA

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iogen Idec announced in mid-October that Health Canada (the Canadian equivalent of the U.S. Food and Drug Administration) has authorized Amevive (generic name alefacept) for sale in Canada. Amevive, the first biologic approved for psoriasis in Canada, will be marketed for the treatment of patients with moderate-

January/February 2005

to-severe chronic plaque psoriasis who are candidates for systemic treatment or phototherapy. Amevive became the first approved biologic treatment for the treatment of moderate-to-severe chronic plaque psoriasis in adults when it was approved in the United States in 2003.

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PSORIATIC ARTHRITIS BASICS PSORIATIC ARTHRITIS This is the fourth in a continuing series on the basics of psoriasis. In our last issue, we reviewed topical treatments. In this article, we focus on psoriatic arthritis. We welcome your comments or any questions you have about psoriasis and/or psoriatic arthritis.

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ou wake up in the morning and you’re stiff for hours. Your joints are throbbing, hot and swollen. You can’t seem to get rid of the pain. Whether it’s trying to open a jar, bend over to tie your shoes or just get through the day at work, life is a chore. Many people pass off stiffness, aches and pains as inevitable signs of getting older. But for people with psoriasis, those symptoms may be indicators of a related, and potentially disabling, disease known as psoriatic arthritis. Psoriatic arthritis is a chronic inflammatory disease of the joints and connective tissue related to psoriasis of the skin. About 10 percent to 30 percent of people with psoriasis develop psoriatic arthritis, which characteristically causes joint pain with or without swelling, usually in the wrists, knees, ankles, joints of the hands and toes as well as the shoulders, hips and spine. People with psoriatic arthritis may feel frustration and depression about the loss of ability to do the things they used to do. According to Paul F. Howard, M.D., a Scottsdale, Ariz., rheumatologist, “It’s related to loss—loss of independence, confidence, optimism, physical abilities. It

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could be losing a job or the loss of doing something they like to do, like hiking a mountain,” he says. The good news is that psoriatic arthritis is a highly treatable disease. New and effective medications can help get the disease under control and improve your quality of life—and diet, exercise and reaching out to others can go a long way toward helping you feel better. Researchers don’t yet know the cause of psoriatic arthritis, but genetic factors, immune system abnormalities and environmental factors seem to play a role. In 85 percent of patients, skin disease precedes the joint disease by about 10 years, typically occurring between the ages of 30 and 50. Often, people with psoriasis don’t realize the arthritis symptoms are associated with their disease. That’s why it’s important to see a doctor—specifically a rheumatologist, who specializes in arthritis—if you are experiencing the symptoms described in this article; left untreated, psoriatic arthritis can cause long-term damage to joints and tissue and lead to disability.

WHAT ARE THE SYMPTOMS? • Stiffness, pain, throbbing, swelling and tenderness of the joints and surrounding tissue • Swollen fingers and toes that take on a “sausage-like” appearance • Morning stiffness and tiredness

National Psoriasis Foundation® PSORIASIS ADVANCE

• Reduced range of motion • Nail changes—the nail separates from the nail bed and/or becomes pitted (develops small indentations) • Eye pain and redness, similar to conjunctivitis, can also accompany some varieties of psoriatic arthritis You may or may not have all of those symptoms, but Dr. Howard says three particular symptoms should be taken as warning signs of possible psoriatic arthritis: morning stiffness that lasts for up to two hours; swelling, warmth and redness in the joints; and pain that doesn’t get better, even with aspirin. There is no definitive test for psoriatic arthritis. Because its symptoms are similar to other arthritic diseases, such as rheumatoid arthritis, diagnosis is partly a process of elimination. Medical history, physical examination, blood tests, MRIs and X-rays of the joints may all be used to diagnose psoriatic arthritis.

HOW IT IS TREATED Treatment for psoriatic arthritis can relieve pain, reduce swelling, help keep joints working properly and possibly prevent further tissue damage. Doctors recommend treatments based on the type of psoriatic arthritis, its severity and a patient’s response to treatment.

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e at the National Psoriasis Foundation generally talk about two types of psoriatic arthritis: localized and generalized. But some medical professionals also refer to five different types of psoriatic arthritis: • Distal arthritis involves the small joints of the feet and hands, particularly the toes and fingers

January/February 2005

The course of psoriatic arthritis varies. Some people have a localized, mild form of the disease, which tends to affect one or two joints and generally causes less deformity and long-term disability. Others have what is known as generalized disabling psoriatic arthritis, with more joints affected, more joint damage and disability. In these cases, more potent drugs and sometimes even surgery and rehabilitation are required. Treatments can be divided into these categories: • Nonsteroidal anti-inflammatory drugs (NSAIDs): These include over-the-counter medications such as aspirin and ibuprofen as well as prescription products. NSAIDs decrease inflammation, joint pain and stiffness. • Disease-modifying antirheumatic drugs (DMARDs): These relieve more severe symptoms and attempt to slow or stop joint and tissue damage and progression of arthritis. Some examples include methotrexate, sulfasalazine, cyclosporine, antimalarials and steroids. • Biologics: These are DMARDs that are made from living human or animal proteins that act at the immune system level to block disease. Examples include Enbrel (generic name etanercept), Remicade (generic name infliximab) and Humira (generic name adalimumab). The biologic Amevive (generic name

• Oligoarthritis involves four or fewer larger joints • Polyarthritis involves more than five joints and may appear similar to rheumatoid arthritis • Arthritis mutilans is a very destructive form that may cause permanent damage to the joints • Spondylarthropathy involves inflammation of the spine and hip joints.

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alefacept) is approved to treat psoriasis; results for psoriatic arthritis are not fully known. Raptiva (generic name efalizumab), approved for psoriasis treatment, was found in a short-term study for psoriatic arthritis to be more effective than placebo, but results were not clinically significant. • Other treatment approaches: PUVA (the light-sensitizing agent psoralen plus ultraviolet light A), is often used in combination with other medications; patients with skin disease as the primary symptom frequently report their psoriatic arthritis improves when their psoriasis comes under control. Surgery is an option for those with severe joint destruction. Physical therapy,

rehabilitation and exercise may help restore and improve joint function. Splints can support joints, improve function and relieve pain and swelling. Finally, heat can relieve stiffness, ice can reduce swelling and warm water soaks can be soothing. Emotional coping tools include reaching out to friends and family; joining a support group; getting counseling; and learning how to talk about the disease in social settings. For more information, visit www.psoriasis.org or request the Psoriasis Foundation’s educational booklets Psoriatic Arthritis, Biologic Medications for Psoriasis and Psoriatic Arthritis and Systemic Medications: Internal Treatments for Psoriasis and Psoriatic Arthritis.

Living fully with psoriatic arthritis W

hen you have psoriatic arthritis, the simple task of walking up stairs can take on Mount Everest-like proportions. During a flare—or even if your joint is less mobile than it used to be—an assistive device can help you get through the day, take pressure off an inflamed joint and even help prevent further joint damage. An assistive device is a tool or implement that makes a particular function easier or possible to perform. The following examples focus on daily tasks that can be made easier with assistive devices. Bathing and showering: Tub and wall grab bars can help you get in and out of the bathtub and keep your balance while showering. Grooming and dressing: Combs, brushes and toothbrushes can be fitted with easier-to-hold handles. Velcro on clothes and shoes or elastic shoelaces can make it easier to get dressed. Button and zipper hooks can be used to fasten clothes.

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Cooking and housekeeping: For hand or wrist limitations, electric can openers, rocker knives and specially designed cookware can ease the task of cooking. Put cleaning supplies and equipment on wheels to cart around the house. Use long-handled dusters, brooms and sponges to take the pressure off of cleaning the floor. Taking medications: Roller applicators make it easier to apply topicals to hard-to-reach areas, such as the back or legs. Mobility: Braces, canes, or walkers can help those who have trouble walking. Automobile mobility: Neck pain from psoriatic arthritis can make turning the head around difficult, but many vehicles now come equipped with reverse sensors. Ask an occupational therapist about whether to add hand controls, low-energy steering wheels and other aids to your car. Ask your doctor about where to find suitable devices for you. Some stores carry cooking and cleaning tools and brands designed for easier gripping or limited range of motion.

National Psoriasis Foundation® PSORIASIS ADVANCE

Finding the cure for psoriasis— we take it personally Richard Seiden

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e who serve as members of the Board of Trustees of the National Psoriasis Foundation have made a serious, personal commitment to oversee the activities of the Foundation. Our Board is comprised of individuals who either have psoriasis and/or psoriatic arthritis, or have loved ones with these diseases. We are a hands-on group of volunteers, who lend more than our names to the advancement of the mission of the Foundation. Ours is not a “social” board, and membership is considerably more than a privilege. The Board oversees the general direction and strategies of the Foundation through the definition of mission and setting of goals. We encourage Board members to serve on committees and task forces, and to represent the Foundation in their community. We ask each Board member to make a minimum annual gift of $1,000, either directly or indirectly, and also financially support special fund-raising efforts of the organization. Board service requires a significant commitment of time, energy and passion. However, all of us find it incredibly rewarding and critical to the future success of the Foundation. We are actively seeking Foundation Members who have been personally affected by the diseases in some way, and are interested in serving on the Board and its committees. We are particularly interested, at this time, in adding Board members with a scientific research or biomedical background. In addition, we welcome individuals with

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other areas of interest and experience, such as strategic planning, fund raising, finance, insurance, marketing, policy development and community service. We are actively seeking broad geographic representation beyond the current Board members. If you are interested in serving on our Board and/or a committee, you should send a resumé and a letter outlining your qualifications and how you believe you can contribute. Please send your letter to Gail M. Zimmerman, President and CEO, National Psoriasis Foundation, 6600 SW 92nd Ave., Suite 300, Portland, Ore., 97223 or by email to [email protected] Please know that this process will take some time and, if you are not selected to serve this time, we would welcome your involvement as a volunteer. On behalf of the Foundation and the Board of Trustees, staff and volunteers, I thank you very much for all of your support for the Foundation and its mission. We encourage your active participation in the Foundation, through contributions, involvement in fund-raising activities, visits to our Web site, attendance at our annual and educational meetings, and membership in local community support groups. As always, we welcome your questions, comments and suggestions. Please let us know how the Foundation can better personally support you and the psoriasis community. With dedication to the mission, Richard Seiden Chair, Board Recruitment and Retention Committee National Psoriasis Foundation Board of Trustees

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A D V E RT I S E M E N T

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Daniel E. Fohrman, M.D. Bend Memorial Clinic Bend, Ore.

Dr. Tell Me Can someone develop psoriatic arthritis after having just psoriasis for a number of years?

Yes, this is in fact the most common scenario for most psoriatic arthritis patients. The development of psoriatic arthritis may occur as much as five, 10 or more years after psoriasis was initially present. But it is important to remember that many psoriasis patients never develop any joint problems related to their psoriasis. I’ve tried a variety of treatments for my mild psoriatic arthritis. A friend suggested acupuncture. Is this an option for me?

I’m not aware that acupuncture has any proven benefit for the treatment of psoriasis. I don’t know it to be harmful but don’t know it to be helpful either. It can be used for temporary symptomatic relief of pain associated with arthritis, but does not appear to have any long-lasting benefit. How often can I have my knee joints injected with steroids to treat my psoriatic arthritis?

The general rule of thumb is that any weight-bearing joint should not be injected more than two to three times in any 12-month period. The concern is that this could cause damage to the cartilage, but there is no convincing evidence in patients that this actually occurs. If the main problem is only in one or two joints, one option is to treat with steroid injections to the joints. For more generalized joint problems, one would use systemic therapy as the first line of treatment. It is important to note that knee injections provide temporary symptomatic relief, which may last from two to six months or more, but they do not stop the spread of

January/February 2005

arthritis or prevent damage as systemic medications are capable of doing. I am 18 years old, and I have had psoriasis for 13 years. Is there something I can do to prevent getting psoriatic arthritis?

Unfortunately, no. There is no evidence that psoriatic arthritis can be prevented. If systemic medication is used to treat psoriasis, it is speculated that this might help prevent or minimize the development of arthritis; there are no plans to systematically study this as a preventative measure. Systemic medications include drugs such as methotrexate, or biologic response modifiers such as Enbrel (generic name etanercept), but you should consult your doctor to determine if these medications are appropriate for you. Because psoriatic arthritis can be controlled with medication, it would be important for you to see a rheumatologist if you are having persistent (lasting two weeks or longer) joint pain or swelling. My rheumatologist suggests light exercise to ease my psoriatic arthritis pain. Is swimming at my area fitness center an option? What else would you recommend?

Any kind of regular exercise that promotes range of motion or conditioning will likely be beneficial. Avoid activities that involve heavy impact due to the potential hurtful effect on the joints. Repetitive activities, if overdone, can cause a flare-up of arthritis in individual joints; therefore, moderation in frequency and intensity is recommended. Specific exercise programs certified by the Arthritis Foundation are available nationally; or, you could see a physical therapist or personal trainer to develop an individualized program of exercise. If you do this, be sure to inform the therapist or trainer that you have arthritis. Arthritis

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patients should be sure to discuss an appropriate routine with their doctor. You may want to modify your exercise program depending on how your arthritis is feeling—for example, if knee joints are flaring, you may want to concentrate on upper body that day. I have psoriatic arthritis in my hands and take aspirin several times a week. Is there anything else I can do to ease the pain in my fingers?

The first line of treatment for the pain of psoriatic arthritis is usually a group of medications called nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter forms of this medication include ibuprofen and naproxen. There are 15 to 20 types available by prescription only. These medications will help to control pain, swelling and stiffness but do not prevent the spread of arthritis to other joints, nor do they stop damage in the involved joints. To slow down or arrest the progression of disease, stronger medication may be needed. Consult a specialist such as a rheumatologist to decide whether you are a candidate for disease-modifying antirheumatic drugs (DMARDs), such as methotrexate or a biologic, such as Enbrel.

I have read that I may be prone to getting osteoporosis because I have psoriatic arthritis. What can I do to prevent this?

Psoriatic arthritis is not a principal risk factor for osteoporosis. But, if you have a more sedentary lifestyle as a result of your arthritis or take corticosteroid treatment, then you will be at higher risk. You, like anyone, should follow the usual recommendation for osteoporosis prevention, including regular weight-bearing activity as well as avoiding excessive caffeine, tobacco and alcohol. You may be at risk for osteoporosis for other reasons, such as small frame size or family history of the disease. If so, you should consult your doctor about whether you should get a DEXA scan to measure your bone density. This is a recommended screening procedure for all women over 65 yeas of age. This is important because osteoporosis is a silent disease that gives no symptoms until a fracture occurs. Medication is available to prevent, treat, as well as reverse osteoporosis.

A D V E RT I S E M E N T

Neoral® Pregnancy Registry for Psoriasis and Rheumatoid Arthritis • The Neoral® Pregnancy Registry for Psoriasis and Rheumatoid Arthritis at Temple University, 3401 N. Broad St, Parkinson Pavilion, Suite #100, Philadelphia, PA 19140, is currently seeking American women who are pregnant and are taking Neoral® for either psoriasis or rheumatoid arthritis to participate in a research study. Vincent T. Armenti, M.D., Ph.D. is the principal investigator. • When you enroll in the registry, the study coordinator will call you once for a half hour initial interview during your pregnancy, and again for a half hour follow up interview after your pregnancy. • For more information, please contact Beth Anne Ahlswede at: 1-888522-5581, 215-707-8534 or e-mail [email protected] or log on to our web site at: http://www.temple.edu/Neoral_Registry

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National Psoriasis Foundation® PSORIASIS ADVANCE

How did an elderly widow affect the lives of millions with psoriasis and psoriatic arthritis?

Through her generous bequest to the National Psoriasis Foundation.

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ertha Futrell, one of the Psoriasis Foundation’s first Members, gave modestly, but with dedication, each year from our founding in 1968 to when she passed away in 1978. Then she left her most generous gift—a will naming the Psoriasis Foundation as her chief beneficiary. That act changed the course for millions. Bertha’s legacy gift seeded many of the basic National Psoriasis Foundation programs and services that have benefited so many and continue to reach more people each day.

Committed donors like Bertha Futrell still fuel our mission of education and advocacy for those affected by psoriasis and psoriatic arthritis, and help to fund research toward a cure for these diseases. “I hereby bequeath to the National Psoriasis Foundation…” This single line in your will can forever change the lives of millions with psoriasis and psoriatic arthritis. Call us today at 800.723.9166 to discuss leaving a legacy that can help future generations.

National Psoriasis Foundation • 6600 SW 92nd Ave., Portland, Ore. 97223 • 800.723.9166 • www.psoriasis.org

Time to kick the habit? Thinking twice about alcohol and cigarettes

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y now, most people believe they know all about the dangers of smoking and drinking. But there is growing evidence that people with psoriasis ought to think especially hard before lighting up or downing more than a few. Smoking and alcohol use increase your risk of developing psoriasis and may make the disease significantly worse. Heavy drinking may also prevent your treatment from working or your disease from going into remission. This is a particular problem since many people use alcohol or smoking to cope with the tough emotions—such as stress or anxiety—that psoriasis can cause. Cigarette smoking—What’s the risk?

One study led by Luigi Naldi, M.D, published in 1999, found a much higher risk of psoriasis in smokers. Dr. Naldi’s group compared people with psoriasis to people with other skin conditions; as many as one in five cases of psoriasis were related to smoking. According to Dr. Naldi, “We know that smoking affects the onset of psoriasis and its clinical appearance. Smoking about doubles a person’s risk of getting psoriasis; the risk increases with the number of cigarettes smoked per day, and is higher in women than men. The risk for women who smoke more than 20 cigarettes per day is about 2.5 times greater than the rate of nonsmokers, and in men the risk is about 1.7 times greater than the rate of nonsmokers.” Studies have also found a very strong association between smoking and a type of pustular psoriasis called palmoplantar pustulosis. How does it affect the body?

Studies of how smoking might affect psoriasis on a biological level are complicated by the thousands of ingredients

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in cigarette smoke. Dr. Naldi points to nicotine as a possible culprit in altering the immune system and possibly skin cell growth, as well as directly affecting skin inflammation. Smoking and alcohol may also be associated with the same psychosocial factors that may drive psoriasis, such as stress, worry and poor coping skills. How does lifestyle affect risk?

A 2000 study examined the effects of various lifestyle practices on psoriasis. The researchers first found that alcohol use and smoking have negative effects on psoriasis (as did emotional stress, obesity and lack of exercise). Then the researchers split the study participants into two groups, based on whether they had ever had remissions or a time when the disease had disappeared completely. The results were dramatic: Fully 78 percent of people who had experienced remissions were nonsmokers, and only 22 percent were smokers. But of those who never experienced a remission, 66 percent were smokers, and only 34 percent were nonsmokers. Alcohol

Alcohol appears to affect psoriasis in men more strongly than in women. One study found that heavy drinking actually lowered treatment response in men. Other studies have shown that men with psoriasis drink more than men without, that there is a significantly higher incidence of psoriasis in alcoholics, and that abstinence can improve the severity of the disease. Dr. Naldi confirms that “data concerning alcohol consumption are less clear-cut. It seems that only young men who are heavy drinkers are at a higher risk for psoriasis,

National Psoriasis Foundation® PSORIASIS ADVANCE

but other studies have shown that drinking alcohol has a negative effect on clinical response to treatment and on the likelihood of remission.” In addition, it should be noted that alcohol can have dangerous side effects when combined with certain psoriasis medications, such as methotrexate or acitretin (brand name Soriatane) in women of child-bearing potential. What about psoriatic arthritis?

There is very little data available about the effects of alcohol or smoking on psoriatic arthritis. One small study published in 1996 looked at the effects of smoking on ankylosing spondylitis (AS), which is a type of arthritis of the spine and neck that affects some people with psoriatic arthritis. After looking at clinical tests, X-rays and laboratory measurements, the authors concluded that smoking was associated with poor long-term outcomes in AS patients. However, according to Dafna Gladman, M.D., F.R.C.P.C., professor of medicine at the University of Toronto, there simply isn’t any data yet to confirm if people with psoriatic arthritis might experience similar negative effects from smoking or alcohol. Dr. Gladman does believe, however, that there may be more evidence to indicate that smoking and alcohol may lower treatment response of a person with psoriatic arthritis. More research needed

Ongoing studies in the United States are currently pursuing these links. The Utah Psoriasis Initiative led by Gerald Krueger, M.D., at the University of Utah, is a long-term study of people with psoriasis. Preliminary analysis of their

January/February 2005

data suggests that smoking has a negative impact on psoriasis and supports “dermatologist-initiated counseling on smoking cessation to improve their patients’ skin disease as well as their general health.” “It’s a fascinating linkage,” says Dr. Krueger. “If the disease is triggered by smoking, can we get the disease back in the can by quitting? We just don’t know yet. However, I tell people that if you need another reason to quit, you’ve got one.” The bottom line

• If you don’t smoke, don’t start, especially if you are a woman—you have an even higher risk of developing psoriasis than men. • If you do smoke, consider stopping—you may have a higher likelihood of remission. • If you drink, do it in moderation—heavy drinking may trigger psoriasis, interfere with your response to treatment and prevent remissions. • If you are on certain medications, do NOT drink—alcohol can lead to serious side effects for patients using methotrexate; women of child-bearing potential also should not drink if they have to take Soriatane. • Focus on positive, healthy ways to cope with stress and anxiety—try meditation, counseling, adequate sleep, healthy diet and exercise. • Be sure your children know of the additional risk if they smoke or drink heavily—Dr. Naldi says smokers with a family history of psoriasis increase their risk as much as nine times.

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CAPITOL HILL DAY: 7-year-old educates peers and national leaders

Sen. Frank Lautenberg and Keira Romanello

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eira Romanello had a good reason to attend the first Capitol Hill Day with her parents Irena and Charles. It all started with a simple request to wear earrings.

“She loved it,” says Irena. “It’s scary to talk with people who you don’t know, but people responded to her because she was the only kid.”

Last year, Keira, then 7 years old, was told by school officials that because of a new insurance liability policy, she would not be able to wear her earrings in gym. For the little girl with plaque psoriasis, the straightforwardsounding policy spelled trouble. Her doctor had advised her parents to leave in her earrings because her plaques on her ears may spread and cover her earring holes; repeatedly piercing her ears could cause more plaques, and she wouldn’t be able to wear earrings again.

While in Washington, D.C., the family educated members of Congress, met other people with psoriasis and spent a day sightseeing. The family plans to return for Capitol Hill Day 2005 on April 10-11. “We may even bring the rest of our kids, and my father, who has psoriasis.”

“This was one of our reasons for going to Capitol Hill Day,” says her mother, Irena Romanello. “People need to be educated about psoriasis.” Not only did the experience with the school administration shut her off from her peers, but the stress also caused Keira’s psoriasis to flare. Keira and her parents lobbied the school with a petition that included quotes from supporters. The experience was difficult but taught Keira and her parents about the importance of educating people through advocacy. Keira’s first advocacy action was to write a report on her psoriasis after being teased by her classmates. Irena soon saw a promotion for Capitol Hill Day on May 17, 2004, and mentioned it to Keira. At first, Keira didn’t want to attend Capitol Hill Day, but later responded with a simple, yet universal, question: “Will they listen to me?” Irena said people would listen, even if they couldn’t promise immediate change. Keira brought the report that educated a handful of peers in school, and used it to speak to a member of Congress, Sen. Frank Lautenberg, D-N.J.

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he efforts of the 2004 Capitol Hill Day participants were rewarded when the House and Senate appropriations subcommittees that fund the National Institutes of Health included psoriasis-specific language in their reports to the full appropriations subcommittees. An excerpt from the House subcommittee report reads, “The Committee encourages NIAMS (the National Institute of Arthritis and Musculoskeletal and Skin Diseases) to support additional research into the identification of other genes expected to play a role in psoriasis pathogenesis, and to strengthen clinical research on potential therapies for psoriasis and psoriatic arthritis.” A legislative assistant for Rep. Rosa L. DeLauro, DConn., looks forward to meeting with National Psoriasis Foundation Members again, and emphasizes the significance of Capitol Hill Day: “It is important to visit Capitol Hill to raise the profile of any issue. Following up on the 2005 Capitol Hill Day, Psoriasis Foundation Members should continue to reach out to Congress so that psoriasis research will always get the funding it needs.”

National Psoriasis Foundation® PSORIASIS ADVANCE

TAKE ACTION: Deliver a message to Congress

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oin us on April 10-11, 2005, as we make our voices heard in the halls of Congress. The second annual National Psoriasis Foundation Capitol Hill Day will focus on increasing the federal commitment to psoriasis and psoriatic arthritis research. No experience is necessary. The Foundation will schedule all congressional appointments and provide training. Registration deadline: Friday, March 11, 2005. Sunday, April 10 Meet fellow advocates and Foundation 5:30-7:00 p.m. staff over light hors d’oeuvres (hotel) Monday, April 11 Breakfast and opening remarks (hotel) 7:30-9:00 a.m. 9:30-11:30 a.m. Capitol Hill visits Noon-1:00 p.m. Lunch (Capitol Hill) Capitol Hill visits 1:30-5:00 p.m. THE CONTEST

Whoever signs up the most new Capitol Hill Day volunteers will receive complimentary transportation to, and lodging for, this event. Contact Psoriasis Foundation Advocacy Coordinator Joey Shearer for more information.

HOTEL ACCOMMODATIONS

The Washington Terrace Hotel is offering a rate of $169 per night (plus 14.5 percent tax) to our group. Call 866.984.6835 and tell them you are with the National Psoriasis Foundation group. Want to stay longer? We have reserved a limited number of rooms at our special group rate for the nights of Saturday, April 9 and Monday, April 11. Hotel reservation deadline: Friday, March 11, 2005. After this date, we lose our special group rate and the hotel no longer guarantees rooms. The Washington Terrace Hotel is located at 1515 Rhode Island Ave. NW, Washington, D.C., 20005 (great location, six blocks north of the White House). Info at www.washingtonterracehotel.com QUESTIONS

Contact Joey Shearer at 800.723.9166, ext. 407 or [email protected] Please visit www.psoriasis.org for online registration and complete Capitol Hill Day details. You will also find links to great Washington, D.C., tourist information.

Names (first and last names as they should appear on nametags): __________________________________________ __________________________________________________________________________________________ Address: ___________________________________________________________________________________ Phone:_________________________________ E-mail: _____________________________________________ Please list any special needs (diet, wheelchair, etc.): __________________________________________________ Please list your two senators and representative so that we can make all appointments for you. Senator:_____________________________ Senator:____________________________ (find at www.senate.gov) Representative:___________________________________________________________ (find at www.house.gov) Return by March 11, 2005 to: Joey Shearer, National Psoriasis Foundation, 6600 SW 92nd Ave., Suite 300, Portland, Ore. 97223, Fax: 503.245.0626 Please enclose your registration fee of $50 per person. [ ] Check [ ] Cash [ ] American Express [ ] Discover [ ] MasterCard [ ] Visa Cardholder’s name:___________________________________________________________________________ Card number:__________________________________________________ Exp. date: ____________________ Cardholder’s signature: _______________________________________________________________________

A special column for kids and teens

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t’s wintertime! The change of seasons can affect your psoriasis, whether you live in Colorado where the mountains hold snow and skiers, or Florida where the sun shines daily on the ocean beaches. Dry air, decreased exposure to sunlight and colder temperatures all contribute to psoriasis getting worse in the winter. This can play a role in the amount and type of exercise

or activity you do and how you enjoy winter playtime. Remember to moisturize frequently. If you are taking drugs that affect your immune system, get a flu shot. Having a cold or the flu can definitely play a role in your psoriasis. Make sure you get plenty of rest, wash your hands a lot, and try to be aware of other things in your life, such as stress, which can increase your chances of getting sick.

Winter Word Jumble Words can be horizontal, vertical or diagonal. Mark out the letters of the words you find. Place the leftover letters in order in the boxes below to spell out a secret phrase. Alternatives Chill Climate Cold Dry Fall Flake Flare Frozen Fun Holiday Ice Itch Lesion Light

Plaque Psoriasis Scale Skate Sledding Slushy Snowman Solar Stress Sunscreen Tanning Bed Temperature Treatment Winter



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National Psoriasis Foundation® PSORIASIS ADVANCE

Advancing the Foundation The light at the end of the tunnel

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id you know that there are more than 5 million adults and children diagnosed with psoriasis and/or psoriatic arthritis? Many cannot access the treatments, information and care they need. That means we have our work cut out for us, and your sustained support will play a vital role in our success in reaching everyone.

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hrough reliable information, emotional support and research, we work toward better treatments, better care and a better future. The Psoriasis Foundation is here to empower you and others whose lives are affected by these diseases.

Your contributions at work

finds materials and training through our volunteer services department. Your support also helps us accelerate research that will lead to better treatments as we strive toward a cure. You help us make it easier for all who have psoriasis or psoriatic arthritis. This is why we are asking you to add an item to your list of New Year’s resolutions—make a donation to the National Psoriasis Foundation. Your gift helps us continue and expand our efforts with your renewed, and perhaps increased, support. You can help us reach more people among the 5 million with these diseases, including those who may not be able to afford a donation. Your donation can help make the future brighter for millions.

Because of your support, we are here for you.

Your support helps our patient education department assist the newly diagnosed caller, confused about his disease and scared because he doesn’t understand it; or the exasperated woman ready to give up, who turns to our advocacy department to encourage her insurance company to cover the treatment she has been prescribed for her severe psoriasis; or the support group leader who

January/February 2005

An easy way to continue your support

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ou can give a little each month or each quarter by setting up a credit card pledge. This way, you don’t have to remember to send in your annual donation each year. Allowing you to give what you can afford each month makes it easy for you to increase your support of our work. Also, if you set up a monthly or quarterly pledge, you can reduce the number of letters you receive from us. Please call our member services department today at 800.723.9166 for more information or to sign up.

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Research zeroes in on psoriatic arthritis T

he American College of Rheumatology 2004 Annual Scientific Meeting was held in October in San Antonio, Texas. The conference is an annual event that attracts thousands of international medical professionals, and organization and company representatives. In a conference sponsored by Centocor, Inc., international researchers and physicians lined the walls of the room to hear about arthritis research on psoriatic arthritis and ankylosing spondylitis in comparison to rheumatoid arthritis.

“We’re learning about how these diseases are very similar,” said Philip Mease, M.D., clinical professor of rheumatology, Seattle Rheumatology Associates, Seattle, Wash. “There are a lot of similarities in the chemical players and cytokines between rheumatoid arthritis and psoriatic arthritis,” said Dr. Mease, such as the prominent role of TNF-alpha. However, psoriatic arthritis differs from rheumatoid arthritis, Mease emphasized, in the chemicals that lead to inflammation in the synovium, a thin membrane in freely

Two new treatments for psoriatic arthritis show significant improvement

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emicade (generic name infliximab) was shown to improve psoriatic joint and skin symptoms in a double-blind, placebo-controlled study of 200 patients.

Patients gave themselves 40 mg of adalimumab selfadministered every other week by subcutaneous (under the skin) injections.

Measuring arthritis measurement scores by week 14 in those using 5 milligrams/kilogram of infliximab:

• Nearly one quarter of the patients (23 percent) achieved 70 percent improvement in their arthritis measurement score. • Nearly 40 percent (39 percent) achieved 50 percent improvement in the measurement score. • More than half (57 percent) achieved a 20 percent improvement in the measurement score.

• About 60 percent achieved 20 percent improvement • Almost one half achieved 50 percent improvement • Nearly one third achieved 70 percent improvement About half of the patients studied were also using methotrexate, which did not significantly affect the improvement level. More than 60 percent of those using infliximab achieved 75 percent improvement of their psoriasis severity score by week 14. Remicade is manufactured by Centocor, Inc.

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umira, also known as adalimumab, was studied for 24 weeks in 289 psoriatic arthritis adult patients.

January/February 2005

Response was rapid, with 27 percent and 52 percent of patients achieving 20 percent improvement in their arthritis measurement scores after two and four weeks, respectively. Measurements of skin also improved significantly during the psoriatic arthritis trial, with 75 percent of patients improving their severity scores by half, nearly 60 percent by 75 and more than 40 percent by 90. Humira is manufactured by Abbott Laboratories.

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moving joints that lines the joint capsule and secretes fluid to protect the joint. Psoriatic arthritis also differs because the initial pathology (beginning of the disease) is in the enthesis rather than in the synovium. The enthesis is where the tendons, ligaments and connective tissue (fascia) inflame where they connect to the bone. In certain cases, this inflammation may lead to calcification at the insertion site. The most commonly affected areas are the heels where the Achilles tendon and the plantar fascia insert. This can lead to pain when standing or walking.

International researchers have acknowledged these differences by forming an organization known as GRAPPA, the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis. GRAPPA is working to define the tools used in measuring psoriatic arthritis treatment success, including outcome measures and international treatment guidelines. They are “not just looking at treating arthritis, but also the spine, dactylitis (enlargement of the toes and fingers) and skin,” said Dr. Mease. The effort and excitement surrounding psoriatic arthritis research bodes well for the community, leading to encouraging news about treatment options and more accurate assessment scores.

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National Psoriasis Foundation® PSORIASIS ADVANCE

EXERCISE AND PSORIATIC ARTHRITIS

Swimming to success Water exercise and psoriatic arthritis

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oint pain doesn’t need to limit you from arm-flexing, balance-improving, heart-pumping exercise. By simply moving your exercise routine to the water, you can avoid the pressure that can harm your joints, while enjoying a total body workout. The main property of water is buoyancy, or, the tendency to push upward and opposite of gravity. This decreased pressure takes the load off of joints, so that they don’t hurt as much as they might on land. “Just as if you were going to the gym, you can achieve three different goals in the water: flexibility, muscle strengthening and aerobic benefits,” says Doreen Stiskal, P.T., Ph.D., an instructor in the physical therapy department at Seton Hall University, South Orange, N.J., and water exercise instructor for the Arthritis Foundation. Many water exercise routines incorporate the same activities found in an aerobics class; by transferring the routine to the pool, the water pressure provides balance and cardiovascular activity. “Being able to perform 35 to 45 minutes helps with the lungs and muscle strengthening,” says Stiskal, and can also lead to a greater range of motion and flexibility. Whether you’re in the pool, at the ocean or just soaking in the tub, water exercise offers a soothing alternative to jogging on concrete or lifting a weight machine.

is typically in the 70s. Also, check the air temperature, so that you don’t leave the warm pool only to shiver in an unheated room—which can tighten the joints on the way back to the locker room. Water chemicals: How is the water treated? Talk with your doctor before attending the classes in case the water might harm your psoriasis. Avoid going in the water if you have open sores that are infected. Chlorine can aggravate psoriasis plaques; shower before the class and thoroughly after with soap to remove all of the chlorine from your skin. Moisturize your skin thoroughly after showering. Locker room: Is there room to sit down? If you have joint involvement, you may need to rest after the workout or sit down to put on your clothes. Also, can you put on your lotions for your psoriasis in the locker room comfortably? Water program and instructor’s qualifications: Is the water program geared toward intensive water exercise or health concerns? Stiskal recommends the Arthritis Foundation Aquatics Program, also available through the YMCA. Some classes start at a low-level, while others are more intense. Deep-water aerobics, for example, suspends you in the water using flotation belts around your waist or ankles.

Stiskal offers the following advice for choosing and participating in a water exercise class:

Low-pressure pace: Remember that pain is a warning, and not to feel inferior if your pace is slower. “It’s very important that people understand the body’s responses to exercise,” says Stiskal.

Water temperature: Warm water pools are easier on the joints than cool water; a temperature of 83 to 88 degrees has a massaging benefit and is more appropriate for water exercise. Pool water designed for lap swims, for example,

Keep in mind that while rheumatologists recommend light exercise, there is no data to help determine whether it is appropriate for you. To learn more, go to www.arthritis.org to find a water exercise program in your area.

Finding a class

January/February 2005

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EXERCISE AND PSORIATIC ARTHRITIS

Gentle movement, gentle spirit Tai chi and psoriatic arthritis

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erhaps you’ve seen them in groups, gathered in city parks or gymnasiums—people moving their limbs through a series of postures in a flowing, dancelike rhythm. They’re practicing tai chi (pronounced “tie chee”), an ancient Chinese martial art that addresses the body, mind and spirit—and, as it turns out, may be beneficial for arthritis. Psoriatic arthritis often comes with stiffness, weakened muscles, joint pain, poor balance, limited flexibility and poor range of motion, among other symptoms. An increasing number of people with arthritis are finding that tai chi provides gentle exercise and improves some symptoms as well. Keep in mind that while rheumatologists recommend light exercise, there is no data to help determine whether it is appropriate for you. If anyone can speak to tai chi’s growing popularity, it’s Troyce Thome, a Southern California-based tai chi instructor. Thome is a master trainer for Paul Lam, M.D., an Australian doctor and tai chi master who helped created a program specifically for arthritis sufferers, called Tai Chi for Arthritis. Thome travels the country teaching this program to tai chi instructors for the Arthritis Foundation. She teaches at Saddleback College in the Mission Viejo, Calif., area to students from college age into their 80s, and also led a workshop at the National Psoriasis Foundation® 2004 National Conference. “I think it’s popular because everyone can do it,” says Thome of tai chi. For beginners and people with arthritis, Thome teaches the Sun form, which involves a simple 12movement form that has a “brisk step,” preventing any single joint from bearing excessive weight. Tai chi is a good option for people with arthritis,” says Thome, “because it’s an exercise that isn’t likely to cause

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Photos courtesy of Troyce Thome

a flare up, that’s not jerky or that’s not going to hyperextend the joints. Tai chi also is easily modified for people who have more severe physical limitations. It also can help with posture, and, her students say, pain relief. (People with psoriatic arthritis should check with their doctor before starting any exercise program.) Tai chi is believed to improve the flow of vital life force or energy, known as “qi” (pronounced “chee”). To that end, qigong (pronounced “chee kung”) movements are included in the Sun form. “Qigong” translates to cultivating one’s life force and involves focused breathing along with movement and meditation to promote a mind-body connection, says Thome. “Once the form is learned you can begin deepening the understanding of the movements by adding tai chi principles into the form.” Thome recently taught tai chi workshops to medical professionals at the 2004 American College of Rheumatology (ACR) Annual Meeting in San Antonio, Texas. Marilee Phillips, a registered nurse at a rheumatology clinic in Louisville, Ky., attended the ACR tai chi workshop. “I liked it very much,” she says. “It’s supposed to stretch you out and improve balance and muscle strength, so I was impressed by that.” “People say, ‘I know if I make myself get up and go to class, the rest of my day will go really well,’ ” Thome says.

National Psoriasis Foundation® PSORIASIS ADVANCE

EXERCISE AND PSORIATIC ARTHRITIS

Where limitations turn to flexibility Yoga and psoriatic arthritis

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hen you think of yoga, do you picture limber exercise enthusiasts contorting their spandex-covered limbs in unimaginable ways? If you’ve got psoriatic arthritis, this very image might cause your joints to ache. When your joints hurt, exercising is probably the last thing you want to do—even if your doctor says you should. But many people with arthritis are taking up yoga, sometimes using modified poses. And they’re getting results: strength and flexibility, less stiffness and pain, better balance and even a better mood. Originating in India, yoga combines physical poses, controlled breathing and meditation to achieve a peaceful mind, body and spirit. Because of its many forms and levels, yoga can appeal to beginners and more advanced practitioners. Increasingly, yoga is recognized as a beneficial, safe exercise for arthritis patients—as long as they work with a yoga teacher who is well-trained, experienced and familiar with arthritis. Paul F. Howard, M.D., a rheumatologist in Scottsdale, Ariz., says that people with arthritis “can build balance and strength and do it in a way that doesn’t injure the joints.” Adjacent to Dr. Howard’s medical clinic is a yoga studio for arthritis patients. The poses are modified for those who have joint pain or damage in their back, neck, knees or hands, or who can’t get down on the floor and up again. And the pace is slower than a typical community yoga class.

January/February 2005

Yoga instructor Steffany Haaz demonstrates simple yoga poses. Photos used with permission of Intellisphere, Inc.

“The big problem is that people with arthritis lose muscle strength around the joints involved. They get muscle atrophy,” he says. “The yoga helps build strength, flexibility and range of motion.”

Movement is important for arthritis patients, as inactivity can lead to weakness, stiffness and more pain. “It’s very hard to think of exercise when you are hurting badly,” he acknowledges. “But with some of the treatments we have now, most people can have their inflammation controlled. Once they do, they can start to move.” Scientific studies are starting to back up claims of yoga’s benefits for arthritis patients. Dr. Howard co-authored a study on yoga and women with rheumatoid arthritis, which he presented at the 2003 American College of Rheumatology annual meeting. Among other findings, the study showed that yoga improved physical function and decreased symptoms of depression in women with rheumatoid arthritis. Steffany Haaz, research coordinator in the Division of Rheumatology at Johns Hopkins University in Baltimore, Md., is researching yoga and arthritis as part of her doctoral work. A registered yoga teacher, certified movement analyst and dancer-choreographer, Haaz teaches yoga to people with arthritis as part of her research. “Yoga is focused on the moment, with no obligation or expectation beyond that single pose,” she says. That can be good for arthritis patients who may experience depression, lack of confidence in their bodies or frustration with their limitations.

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EXERCISE AND PSORIATIC ARTHRITIS

“Unlike some other sports where there is an end goal, yoga is about noticing where you are in the moment and accepting where you are,” Haaz says. “It works physically, mentally and spiritually.” She cites numerous ways yoga might help people with arthritis: • • • • • •

Strengthening muscles and stabilizing joints Improving balance, which may prevent falls Helping to lift depression and anxiety Helping to prevent obesity Relieving pain, stiffness and/or swelling Improving range of motion and possibly grip strength

Like any exercise, however, there are some potential risks, such as injury or increased stress to sensitive joints. That’s why she recommends always checking with a doctor before starting a yoga (or any exercise) class and working only with a yoga teacher who is registered and experienced with arthritis. Keep in mind that while rheumatologists recommend light exercise, there is no data to help determine whether it is appropriate for you. She offers another piece of advice. “If it hurts, stop.” she says. “One of the tenets of yoga is to attend to what’s happening in the moment, and that includes pain. If you are feeling uncertain or uncomfortable in a particular pose, be sure to ask the instructor for help.”

Photos used with permission of Intellisphere, Inc.

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Yoga tips for patients with psoriatic arthritis

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ind a registered yoga instructor who has experience working with arthritis patients. Many yoga instructors are not physical therapists, and have limited knowledge of psoriatic arthritis. The Yoga Alliance registers teachers who demonstrate qualifications that meet minimum teaching standards established by the organization. Find a list of registered yoga instructors in your area by visiting www.yogaalliance.org Ask if and how much experience they have working with arthritis—even if they are registered. Not all classes are appropriate for people with arthritis, and not all teachers feel comfortable teaching students who may have medical conditions or specific limitations. Try to speak with the teacher ahead of time to determine if his/her class would be right for you. Don’t go beyond what you can do. If a pose causes pain, DO stop and ask the instructor for help. Don’t buy a video and try to learn yoga on your own. Videos can be a good way to practice yoga on your own, but they are not a replacement for personalized instruction, especially for students who may need special modifications and attention. Don’t modify the poses on your own or you might end up causing stress on other joints. But DO tell your teacher what you think might make the poses easier for you. With a bit of guidance, the student can often be his/her own best teacher. Don’t make it a goal to look like the cover of yoga magazines. Yoga is not about a particular ideal. It is about living in the moment and accepting each challenge as it arises. Your yoga poses will be different from other classmates, and also different from day to day. This is what keeps yoga interesting and rewarding, no matter how experienced the student.

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It Works for Me

Member accounts about caring for psoriasis and psoriatic arthritis. The Psoriasis Foundation does not endorse or recommend any treatment regimens, diets, medications or products.

Remember to send in your tips and advice, including the dosage and frequency, so that others may learn what has worked for you.

way through. I even wear them during housework because usually after an hour or so my feet are screaming. M.O., Saddle Brook, N.J.

Also, we have copies of “The Best of It Works for Me 1991-1999” available for your purchase for $5, including shipping and handling. This collection gathers a decade’s worth of tips and advice. To purchase, call the National Psoriasis Foundation at 800.723.9166.

Editor’s note: Dansko shoes are available in many department stores, specialty shoe stores and online. Tai chi helps balance, relieves stress

There are two places on old people’s bodies that are hard to reach: toenails and back. I have psoriasis on my back and other places on my body. When I needed to put ointment on my back, I would have to call my wife to rub it on for me. I thought, why not use a paint roller? It worked great! I went to the hardware store and bought a 4-inch trim foam rubber roller. No problem after that. I called my dermatologist, and he recommended it to one of his patients that day. J.E., Elmer City, Wash.

I have psoriatic arthritis in my ankles, feet and shoulders, so strengthening the supporting muscles and joints through tai chi is very beneficial. It is extremely easy on the joints, but if the tai chi is done correctly, you definitely know that you have exercised. It is a terrific stress reliever, too. I have found that improving my balance was imperative since the psoriatic arthritis weakened my ankles and they would twist and roll easily, causing me to fall many times. Tai chi improved this condition immensely. Once you learn to properly execute the basic moves from a qualified instructor, you can get videos to use at home if time and/or funds are an issue. M.P., via e-mail

Pliers ease hand strain

Supplement leads to stronger nails, clearer skin

I keep a pair of pliers in my kitchen gadget drawer to open soda bottles and to pull the plastic ring off the milk cap. I also have a foot scrubber that suctions to the tub floor so I don’t have to bend over to scrub my toes in the shower. J.L., via e-mail

Thought you might like to hear about my success with psoriasis. My psoriasis has been mostly mild since I was a kid. My doctors recommended that I use the supplement biotin at 300 milligrams. The results have been stronger fingernails and toenails, and some hair growth. Importantly, my skin has cleared up somewhat better with less redness and itch. L.G., Tarzana, Calif.

Roller helps ointment application

Shoes ease arthritis in feet

Buying Dansko shoes is money well-spent for me. I highly recommend them for anyone with psoriatic arthritis in the feet. Last year I feared I wouldn’t make it through a business trip during which I was on my feet a lot. I truly believe without these shoes I would have been useless half-

January/February 2005

Editor’s note: Biotin supplements are available in many groceries, pharmacies and health food stores, such as GNC. Always check with your doctor before starting any supplements.

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www.psoriasis.org Staying healthy over the winter

While logging online to check winter weather, be sure to visit www.psoriasis.org for a wealth of information from in-depth research to simple tips on psoriasis treatment. You probably already know that winter can be the toughest time of year for people with psoriasis and/or psoriatic arthritis. Dry air, decreased sunlight exposure and cold temperatures all contribute to psoriasis getting worse in the winter. We’ve gathered some winter skin care tips to help you manage your psoriasis this season. • Take warm, not hot, showers or baths. Limit the length and frequency of baths and showers. • Use a mild soap or cleanser, and use as little as possible. Limit its use to face, armpits and genitals if you can. • Dry your skin thoroughly but gently—pat, don’t rub. Put moisturizer on your skin immediately after bathing. • Apply a heavy cream moisturizer, ointment or petroleum jelly to seal in the moisture. • Use a humidifier in the bedroom or living room. If you don’t have a humidifier, try placing pots of water on or near your radiators or heating vents.

What’s happening on our Web site

strep infections, which can cause psoriasis to flare badly, also grows at this time of year. To stay healthy, make sure you get plenty of rest, wash your hands frequently and call your doctor if you think you’re getting sick. Flu vaccines are recommended for psoriasis patients who are taking immunosuppressant drugs. In addition to cold weather and cold bugs, the new year often brings added stress, increasing the chance of flare ups. Doctors recommend practicing some form of relaxation on a regular basis. Anything that helps you relax, such as meditation, exercise, biofeedback or listening to music, can help keep your psoriasis under control, particularly during stressful seasons. If you’re lucky enough to be able to get away for a winter vacation, consider spending your leisure time in a warm, humid climate. The sunshine, water and warmth can benefit your skin as well as your spirits. For more information, visit these Web sites: Healthfinder: www.healthfinder.gov/news/newsstory.asp? docid=509950 Medline Plus: www.nlm.nih.gov/medlineplus/ency/article/ 003250.htm WebMD: www.my.webmd.com/content/Article/94/ 102730.htm Coming soon!

• Don’t overheat your home or sleep with an electric blanket. Excessive heat draws moisture out of the skin.

Change is in the air. Led by our new Web content manager, we are working behind the scenes to update and improve www.psoriasis.org

Winter is cold and flu season—illnesses that affect the immune system can, in turn, affect psoriasis. The risk of

Bookmark our site and check back for a new look and enhanced features later this year.

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National Psoriasis Foundation® PSORIASIS ADVANCE

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Psoriasis support groups

P

soriasis support groups are coordinated by and for people who share the common challenge of living with psoriasis and/or psoriatic arthritis. Support groups are arenas of exchange that offer information, education and resources. Support group leaders are accredited through the National Psoriasis Foundation and are appointed annually by the CEO of the Foundation. In order to obtain accreditation, support group leaders agree to follow Psoriasis Foundation policies and procedures. The Psoriasis Foundation, in turn, agrees to offer information, support, materials and training. Regularly scheduled meetings allow you, your family members and friends an opportunity for: • Confidential, nonjudgmental interaction with others who know what it is like to have psoriasis/psoriatic arthritis

ALABAMA

• Southside Etowah County Psoriasis Support Group Contact: Beverly Hill Phone: 256.442.5056 [email protected] CALIFORNIA • Half Moon Bay Bay Area Support Group Contact: Jody Kim-Eng Phone: 650.560.9799 [email protected] • San Bernadino Inland Empire Psoriasis Support Group Contact: Ray Sanchez Phone: 909.889.0705 [email protected]

30

• Understanding and assurance from others that you are not alone in your experiences of living with psoriasis and/or psoriatic arthritis • Hope that it is possible to take control of these diseases through education and support • Information, speakers and literature about these diseases and related topics • Forming new relationships for support outside of the group Below is a list of affiliated support groups of the National Psoriasis Foundation. Please contact the leader of the group directly for further information. If there is not a group in your area and you are interested in starting one, visit www.psoriasis.org/community/support/starting.php

ILLINOIS KENTUCKY • Chicago • Louisville Contact: Lavertia Anderson Contact: Gloria Wheeler Phone: 773.660.4297 (after 7 Phone: 502.583.7546, p.m.) ext. 122 [email protected] [email protected]

MONTANA • Billings Montana & N. Wyoming Psoriasis/Psoriatic Arthritis Support Group Contact: Toni Ann Little Phone: 406.245.9719 [email protected]

INDIANA MICHIGAN • Indianapolis • Detroit Indiana Psoriasis and Psoriatic Metro Detroit Psoriasis Social NEW YORK Arthritis Support Group Connection • Long Island (Plainview) Contact: David King Contact: Brian Masserman The Long Island Psoriasis Phone: 317.359.1924 Phone: 248.624.8668 Network [email protected] [email protected] Contact: Joseph Ettari Phone: 631.360.2192 KANSAS MISSOURI [email protected] • Wichita • Fenton or Contact: Rick Tarin Wichita Psoriasis Group Greater St. Louis Psoriasis Phone: 718.387.8583 (after 6 Contact: Shontá King Support Group p.m.) Phone: 316.522.7672 Contact: Brenda Ernst [email protected] Phone: 636.394.5937 [email protected] National Psoriasis Foundation® PSORIASIS ADVANCE

• New York City PENNSYLVANIA Psore Pskin Psoriasis Support • Pittsburgh Group Pittsburgh Psoriasis Support Contact: Pat O’Shea Group Phone: 718.975.6920 Contact: Kathleen Gallant [email protected] Brickley or Contact: Pat Gilleaudeau Phone: 724.941.4419 Phone: 212.327.8333 [email protected] (9 a.m. – 5 p.m. M-F) [email protected] TENNESSEE • Knoxville OREGON Knoxville Psoriasis Support • Portland Group Greater Portland Area Contact: Amanda Gambill Psoriasis and Psoriatic Phone: 865.363.4873 Arthritis Support Group [email protected] Contact: Kristine Mitchell Phone: 503.393.0151 (weekends) [email protected]

TEXAS • Austin Austin Psoriasis Support Group Contact: Deidre Earls Phone: 512.453.8784 [email protected] • Dallas Dallas/Fort Worth Psoriasis & Psoriatic Arthritis Support Group Contact: David Bruce Phone: 972.539.9475 [email protected]

• Houston Houston Psoriasis Support Group Contact: Rachel Green Phone: 713.661.7310 [email protected] • San Antonio Nuevo Amanecer Bilingual Psoriasis Support Group Contact: Ninfa Cantu Phone: 210.434.2812 [email protected]

A D V E RT I S E M E N T

Coal tar or salicylic acid shampoos and ointments available without prescription Effective, long-lasting relief for itching and scaling For a free brochure, call 1-800-942-2009 or visit wwww.mg217.com

January/February 2005

DR. LI’S HERBAL TREATMENT FOR SKIN DISORDERS

#1 BESTSELLER

• Detoxify body system • Improve immune system • Work from inside out • 12 years clinical experience

Healing Psoriasis: The Natural Alternative and Dr. John’s Healing Psoriasis Cookbook...Plus!

Merry Clinic

www.merryclinic.com 1-888-666-9808

1998 through 2003 Amazon.com and Barnesandnoble.com

by Dr. John O.A. Pagano Chiropractic Physician for more information call: 201-947-0606 or 1-800-919-4001 Website-www.psoriasis-healing.com

There is an answer!

31

A D V E RT I S E M E N T

�������������� ������������������ ��������������

The Global Leader in Phototherapy

205 West Bement Street, P.O. Box 626, Bryan OH 43506

800.322.8546

[email protected] www.daavlin.com

Consumer Watch Epimend topical

Epimend is a non-prescription topical treatment made with extract of Wrightia tinctoria, urea and a coconut oil base. Customers have expressed relief for symptoms of cracked, dry, scaly and itchy skin and have reported no discomfort upon application. This product is odorless and should not stain your clothes. For more information, visit www.epimend.com or call 541.923.5663. Theraflax Natural Oils

Theraflax is a natural blend of three coldpressed oils: flax oil, borage oil and black cumin oil. It is to be taken internally, and not for topical skin application. Theraflax nourishes your body with natural omega-3 and omega-6 essential fatty acids. Theraflax contains anti-inflammatory agents that may help symptoms of psoriatic arthritis. For more information and to purchase, please visit www.theraflax.com or e-mail [email protected]

Please note the Psoriasis Foundation neither tests nor endorses psoriasis products or treatments. The following is purely informational.

shaft and a comfortable and plump oval cushion handle. To purchase, call 800.531.9479 or visit www.shop.store.yahoo.com/capability/ index.html Denorex Psoriasis products

New Denorex Psoriasis 1.5% Coal Tar Cream and 3% Salicylic Acid Cream are now available for both overnight and daytime treatment. Coal tar is known to be an effective ingredient to help relieve itching, redness and flaking associated with psoriasis symptoms. This topical cream absorbs like a lotion and leaves no greasy residue or buildup, and has a mild fragrance that masks the coal tar scent. Denorex Psoriasis Salicylic Acid Cream removes scales and protects skin. It contains vitamin A and vitamin E and is fragrance free. For more information and to see other Denorex products, visit www.denorex.com

Good Grips buttoner

The Good Grips buttoner helps you button and unbutton your clothes. Use the wire loop on this buttoner to reach through the buttonhole, pick up the button and pull it back through. To unbutton, put the buttoner through the opposite way and pull the button back out. The Good Grips buttoner has soft flexible rings on the

January/February 2005

A D V E RT I S E M E N T

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ADVOCACY

[ad´• vo • ca • cy], n. Active support in favor of a cause, idea or policy Take action and make a difference by joining the Capitol Hill Day effort. See page 15.

A New Year and a fresh start

Do you support your local library? Then you are a literacy advocate. Have you recently volunteered at a homeless shelter? Then you are an advocate for the homeless. Being an advocate often is just part of your daily routine. And, when something affects you on a daily level—as does psoriasis—you have even more reason to advocate for your cause. Do you want to become a psoriasis advocate? The Foundation will provide the information and training you need. The more that people participate, the stronger our efforts become.

Consider these examples: • More than 800 people e-mailed Medicare rule-makers encouraging them to allow access to psoriasis and psoriatic arthritis treatments. This action will pay dividends when the Medicare prescription drug benefit comes into effect in 2006. • Thirty-four Foundation Members traveled to Washington, D.C., in April 2004 for our first annual Capitol Hill Day. Their visits to 42 congressional offices resulted in Congress officially asserting its support for psoriasis research. Read about our next trip on page 15. • Foundation Members have signed up to be Psoriasis Foundation-affiliated support group leaders in their community. They will provide information, support and awareness to many others. Read more on page 30. If you have questions or want to get involved, please contact [email protected] or 800.723.9166, ext. 407.

ADDRESS SERVICE REQUESTED 6600 SW 92nd Avenue, Suite 300 Portland, Oregon 97223-7195 USA

NONPROFIT ORGANIZATION

U.S. Postage

PAID

Portland, OR Permit No. 1338

printed on post consumer recycled paper

Do you take in stray animals? Then you are an animal advocate.

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