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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
12
22
Gail M. Zimmerman
President and CEO
Portland, Ore.
ARTICLES
Psoriatic arthritis basics
4
Editorial Staff
Finding the cure for psoriasis—join the Foundation Board of Trustees
7
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
12
Capitol Hill Day—youngster educates peers, national leaders
14
Take action—deliver a message to Congress
15
Research zeroes in on psoriatic arthritis
19
Contributing Writer
Swimming to success—water exercise and psoriatic arthritis
21
Tara Rolstad
Gentle movement, gentle spirit—tai chi and psoriatic arthritis
22
Where limitations turn to flexibility—yoga and psoriatic arthritis
23
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
2
It Works for Me
27
Front Porch
3
www.psoriasis.org
28
Dr. Tell Me
9
Support Groups
30
Just4Us
16
Consumer Watch
33
Advancing the Foundation
17
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
1
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
2
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?
A
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
T
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
B
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-
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.
3
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.
Y
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 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
4
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
• 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.
W
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
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.
5
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.
6
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.
Finding the cure for psoriasis—
we take it personally
Richard Seiden
W
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
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
7
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
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
9
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.
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
10
How did an elderly widow affect
the lives of millions with psoriasis
and psoriatic arthritis?
Through her generous
bequest to the National
Psoriasis Foundation.
B
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
B
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
12
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,
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
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.
13
CAPITOL HILL DAY:
7-year-old educates peers
and national leaders
Sen. Frank Lautenberg
and Keira Romanello
K
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.
14
T
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.”
TAKE ACTION: Deliver a message to Congress
J
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
I
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
’
16
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Y
,
!
Advancing the Foundation
The light at the end of the tunnel
D
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.
T
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
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
An easy way to continue your support
Y
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.
17
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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
R
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.
H
umira, also known as adalimumab, was studied for
24 weeks in 289 psoriatic arthritis adult patients.
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.
19
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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20
EXERCISE AND PSORIATIC ARTHRITIS
Swimming to success
Water exercise and psoriatic arthritis
J
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
21
Gentle movement, gentle spirit
Tai chi and psoriatic arthritis
P
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
22
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.
Where limitations
turn to flexibility
Yoga and psoriatic arthritis
W
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.
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.
23
“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.
24
Yoga tips for patients with psoriatic arthritis
F
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-
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.
27
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.
28
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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]
• 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]
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
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
��
��
��
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
33
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.

psoriasis - Theraflax

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