PSORIATIC ARTHRITIS MEDICAL NEWS

SJOGREN'S SYNDROME

During the last few weeks, several of the daily e-mails have been dealing
with
Sjögren's Syndrome, including communications from our founder, Michelle
Atwood Stack who suffers from this chronic condition.

As the seventh in our continuing series about other forms of arthritis
related diseases, the following is specific information on this chronic
autoimmune disorder.

What Is It? - Sjögren's (pronounced "show grins") syndrome is a chronic,
inflammatory, autoimmune disorder that affects between 2 and 4 million people
in the United States. The organs that normally produce lubricating fluid -
including the salivary glands in the mouth and the lachrymal glands in the
eye - fail, resulting in abnormally dry eyes and mouth. Although these are
the most commonly affected glands, all of the body's glands that excrete
sweat, saliva or oil may be involved.

Named after Swedish eye doctor Dr. Henrik Sjögren, this syndrome can affect
people of all ages and races. However, 90 percent of all cases involve women,
usually between the ages of 45 and 50.

About half of people with Sjögren's syndrome also have another connective
tissue disease such as rheumatoid arthritis, lupus erythematosus (lupus),
scleroderma or polymyositis. In these people, Sjögren's syndrome is referred
to as a secondary condition. In people without other connective tissue
diseases, Sjögren's syndrome is called a primary condition.

The cause of Sjögren's syndrome is unknown. Some people experience only minor
symptoms. Others may have blurred vision, constant eye discomfort, recurrent
mouth infections, swollen salivary glands and difficulty swallowing or
eating. Sjögren's syndrome can also affect the lungs, liver, vagina,
pancreas, kidneys and brain.

Dry mouth and dry eyes can lead to tooth decay, periodontal disease, poorly
fitting dentures, salivary gland stones (sialoliths), infection of the
salivary glands, oral fungal infections (thrush), mouth sores, weight loss,
malnutrition, bacterial conjunctivitis, corneal ulcers and vision loss.
People with Sjögren's can also have joint pains, muscle pains or
restlessness.

Symptoms - Symptoms include eye pain and redness (the eyes feel dry and
sandy), dry mouth, vaginal dryness, joint pain and stiffness, muscle aches,
dry, cracked tongue and enlarged lymph glands.

Diagnosis - Sjögren's syndrome is difficult to diagnose because its symptoms
are also characteristic of other diseases. Also, no two people with Sjögren's
syndrome have exactly the same symptoms.

If Sjögren's syndrome is suspected, blood tests can be used to determine if
you have markers (auto antibodies) for the disease. Certain tests can
determine the amount of lubrication your body's glands are producing. A
Schirmer test uses a small piece of filter paper placed under the lower
eyelid. A slit-lamp examination involves placing a drop of dye into the eye
and examining the eye with a special instrument. A salivary function test
measures the amount of dryness in the mouth. Your dentist may also perform a
lip biopsy to examine minor salivary glands.

Expected Duration - Sjögren's syndrome is a life-long disease.

Prevention -There is no known way to prevent Sjögren's syndrome.

Treatment - Sjögren's syndrome cannot be cured, but proper treatment can help
relieve symptoms and allow you to live more comfortably. Aspirin and
nonsteroidal anti-inflammatory medications can reduce joint swelling and
stiffness and muscle aches. Your physician may prescribe corticosteroids or
immunosuppressive drugs for more serious complications. Discuss with your
doctor whether any other medications you are taking - such as antihistamines
or antidepressants - may be contributing to dryness.

Ask your physician or ophthalmologist for a good-quality artificial tear
preparation or lubricating ointment. Moisture chamber eyeglasses, which
preserve existing tears and protect the eyes from drafts and wind, can be
useful as well. When eye dryness is severe, a procedure called punctal
occlusion may be performed. This inhibits tear drainage, encouraging tears to
accumulate and moisten the eye.

Lubricants also are designed for nasal and vaginal dryness. A good
moisturizer can alleviate the tightness of dry skin. Humidifiers increase the
moisture in the home or office. Avoid drafts from air conditioners, heaters
and radiators when possible.

To reduce dry mouth, your dentist or physician may prescribe pilocarpine.
(This drug also may relieve some eye dryness.) To ease dry mouth, drink
plenty of liquids throughout the day. Sugarless gum and candy can stimulate
saliva production. Artificial saliva preparations also are available. Avoid
caffeinated beverages and alcohol because they can increase dryness. Also
avoid acidic or spicy foods, which can irritate your mouth.

Brush your teeth immediately after eating and see your dentist frequently.
You have a higher risk of tooth decay because you have less saliva, which has
antibacterial properties that help protect your teeth and also washes the
surfaces of your teeth. Don't smoke or use other forms of tobacco. They can
harm your mouth, nasal tissue, eyes and lungs.

Walking or swimming can help keep your joints and muscles flexible. If
Sjögren's syndrome is a secondary symptom of a connective tissue disease, the
type and intensity of your exercise program should be tailored to that
specific disease. Consult your physician before starting any exercise regime.

When To Call A Professional - If you have dry eyes and mouth for more than a
few days, call your doctor or dentist. Keep in mind that Sjögren's syndrome
is difficult to diagnose and your symptoms may be due to another condition.

Prognosis - Sjögren's syndrome is different in each person. Some people may
experience only mild symptoms and be able to control them with medication.
Others can cycle through periods of relative healthiness followed by severe
disease. At its worst, Sjögren's syndrome can damage vital organs of the body
and impair the quality of life.

Additional Info:
Sjogren's Syndrome Clinic
National Institute of Dental and Craniofacial Research
National Institutes of Health
Bethesda, MD 20892-2190
Phone: (301) 496-4261
http://wwwdir.nidcr.nih.gov/dirweb/gttb/sjogrens/SjogrenIndex.asp

********************************

AUTOIMMUNE DISEASE, IMMUNITY & INFECTION

Recently there were e-mail questions about our immune systems and what
changes take place when you have Psoriasis and Psoriatic Arthritis. The
following information provides some very interesting background about our
immune responses.

Autoimmune diseases are not typically thought of as infectious, but there are
some cases when they may be. Long before birth, the immune system begins to
develop. This disease-fighting system has to do battle with all the different
infectious agents that it may encounter. To do this, immune system cells
learn to distinguish different substances, mainly proteins. The immune
response obviously is not perfect, given that death from infections can still
occur, but it is adept at fighting most of the viruses and bacteria we
encounter.

Antibodies are one of the immune system's major infection-fighting tools.
These remarkable proteins recognize distinct chemical structures called
epitopes (usually portions of proteins) on viruses and bacteria. When the
immune system encounters a new pathogen (disease-causing microbe), white
blood cells called B cells produce antibodies directed against specific
epitopes on the organism. These antibodies also interact with other cells,
including white blood cells called T cells and a group of chemicals called
the complement system, to help eradicate the threat. T cells, as well as
natural killer cells, macrophages and other immune cells, can also act
independently of antibodies to attack some pathogens.

How does the immune system distinguish the proteins that are pathogenic from
those that are "self" and therefore should be left alone? In a very complex
manner, each person develops tolerance to his or her own proteins and cells.
This is why a person's immune system does not attack his or her own blood
cells, but it does quickly destroy transfused blood cells that are the wrong
blood type.

As with any organ system, however, the immune system can become defective.
Sometimes antibodies are formed that do attack "self" proteins -- that is,
proteins that are normal constituents of the body. In fact, there are
probably always very small numbers of antibodies against self, but their
activity does not cause any significant effect. But when antibodies and even
cells with activity against self are present in significant numbers, an
autoimmune disease can develop.

Many of these diseases -- such as lupus, rheumatoid arthritis, Sjogren's
syndrome and scleroderma -- can cause joint problems. Several others, such as
Goodpasture syndrome and Wegener's disease, can cause kidney damage.
Infectious diseases are thought to trigger some, if not most, autoimmune
diseases. Rheumatic fever, caused by strep bacteria, occurs when antibodies
that form to fight the strep also act on cells in the heart and joints.
Certain forms of encephalitis can be triggered indirectly by viruses and even
vaccines (such as the old rabies vaccine, which is no longer in use). Some
investigators believe that multiple sclerosis develops in this same manner.

Sometimes autoimmune diseases are over diagnosed. For example, one of the
tests used to test for lupus is the anti-nuclear antibody (ANA) test. Many
people have levels of ANA that are detectable. Some physicians erroneously
tell patients that they have lupus based on this test alone. It is unclear
why, but many, if not most, people with positive ANA tests never develop any
symptoms of lupus at all.

*******************************

UNCERTAINTY REGARDING ARTHRITIS SYMPTOMS
A Harvard Commentary by Robert H. Shmerling, M.D.
Harvard Medical School

It seems like a reasonable assumption: your doctor knows the cause of your
arthritic symptoms. And the process is straightforward: you have a problem,
you go to the doctor, he or she tells you the cause of your problem and the
doctor then makes recommendations about how to treat it.

However, your doctor's notion of certainty and complete understanding of
illness are probably overestimated. The best health providers recognize they
are dealing with possibilities and probabilities and learn to accept
uncertainty. In medical training, future physicians learn to create a
differential diagnosis - a list of reasonable explanations for the problem at
hand - and make some attempt to identify the most probable. The ability to
promptly prune this list down to one diagnosis with confidence is more often
the exception than the rule.

Interestingly, certain fields of medicine, such as arthritis, have more
uncertainty than others, such as cancer. That is, a diagnosis of cancer based
on the results of a biopsy is typically less open for debate than the cause
of joint pain. Even some exceedingly common problems within one field of
medicine are poorly understood. Back pain, gout and shoulder disease are
standouts in this regard.

Too Many Answers - If you are one of the millions of back pain sufferers, you
may see your doctor and learn that you have back strain. However, another
provider may tell you that your back pain is caused by arthritis, and yet
another offers disk disease as an explanation. They may all be exceptional
physicians, but the scary thing is they may all be wrong. The fact is, most
back pain cannot be definitively diagnosed.

Don't Try This At Home - If you put your arm in a sling for two weeks, your
shoulder will become very stiff. In fact, you might lose motion in your
shoulder, making it hard to reach back or high shelves. And that lost motion
may never return. (Just to be clear: this experiment is not recommended.)
This condition, called frozen shoulder, may affect anyone who does not move
his or her shoulder for a prolonged period, for whatever reason.

Sometimes frozen shoulder develops for no apparent reason. Or, in some cases,
bursitis, tendonitis or rotator cuff injury may cause pain in the shoulder,
leading the patient to avoid certain motions, in turn causing the shoulder to
"freeze." Getting motion back may be very difficult or even impossible.

One reason for the common recommendation that patients with shoulder pain see
a physical therapist is to prevent or reduce the loss of motion that often
follows, especially if the painful condition lasts more than a week or two.
The potential for frozen shoulder is also a reason to avoid prolonged use of
a shoulder sling.

There are theories about why this process develops, including the release of
chemical signals within the joint that lead to scarring and constriction of
tissues that surround the shoulder joint. There are risk factors, such as
diabetes or fracture of the upper arm, but the root causes of frozen shoulder
- and in many cases, the causes of the underlying triggers, such as bursitis
or tendonitis - are unknown.

Why Me? - Gout is a common form of arthritis in which crystals of uric acid
deposit in one or more joints, causing sudden inflammation and pain. We all
have a certain level of uric acid circulating in our bloodstream because uric
acid is a waste product of normal metabolism. Yet gout affects only some
people.

Risk factors associated with gout include being male, having hypertension or
kidney disease, taking certain medications, such as diuretics, and having a
high uric acid level in the blood. But most people with these risk factors
never develop gout - and no one knows why one person has attacks of gout and
another does not.

The Bottom Line - If uncertainty is so rampant in medical care, you may
wonder why you should see your doctor at all. There are some very good
reasons:

Identifying the definite cause of symptoms may be impossible; however, making
sure there is nothing dangerous or serious is also important and can usually
be done with relative certainty. Doctors are often better at telling you what
you do not have than what you do have.

There are many arthritic conditions that can be diagnosed with certainty and
readily treated.

There are good reasons to see your doctor even if you have no symptoms.
Checking your blood pressure, for example, is a well-established way to
identify a problem (hypertension) that may cause no symptoms for many years.
However, appropriate diagnosis and treatment of hypertension is effective at
preventing later problems.

Seeing your health care provider is an excellent opportunity to review
preventive measures that have proven health benefits. Examples include
screening measures for breast, cervical or colon cancers.

Perhaps the most important implication is recognizing that expectations of
certainty from your health care provider about many health matters may be
unrealistic. If you have back pain, gout or shoulder pain and there's no
clear answer about your condition available, a second opinion may be an
option to consider. But don't be surprised if the additional evaluation
simply confirms the uncertainty of the situation.

Robert H. Shmerling, M.D., is associate physician at Beth Israel Deaconess
Hospital and associate professor at Harvard Medical School. He has been a
practicing primary care physician and rheumatologist for 17 years at Beth
Israel Deaconess Medical Center. He is an active teacher in the Internal
Medicine Residency Program, serving as the Robinson Firm Chief. He also is a
teacher in the Rheumatology Fellowship Program.

This interview is not intended to provide advice on personal medical matters,
nor is it intended to be a substitute for consultation with a physician.

******************************

HOW YOU CAN HELP GUARD AGAINST ERRORS
By Lisa Ellis - InteliHealth News Service

Experts say that you, as a patient, have one of the most important roles to
play in protecting yourself from medical errors.

Here are some tips for patients, compiled from the Joint Commission on
Accreditation of Healthcare Organizations, the U.S. government's Agency for
Healthcare Research and Quality, and interviews with experts.

Active Participation - Take part in every decision about your health care.
Ask questions, and speak up about anything that you don't understand or that
causes you concern. If you are not prepared to ask questions on your own
behalf - because of personality, illness or other reasons - ask a family
member or friend to fill this role for you.

Medications - Keep a list of everything you take. Make sure you know the
dosages and the purpose of the medicines. Read medicine labels, including
warnings. Learn what side effects to watch out for, whether the medicine has
dangerous interactions with other drugs, and whether you should avoid certain
activities - such as drinking alcohol or spending time in the sun - while you
are taking it. If you have concerns or questions, ask your pharmacist or your
doctor. Tell all of your doctors and your pharmacist about every drug you are
taking, and any allergies. This includes prescription drugs, over-the-counter
drugs, vitamins, supplements and herbal products. Bring your medicines to
your doctor appointments. Make sure the medicine you receive is what the
doctor actually prescribed. If it looks different than what you expected, ask
the pharmacist about it.

Test Results - Make sure you get the results of every test, and understand
what they mean. If you do not hear about test results, never assume that
everything is all right. Call your doctor's office and ask.

Hospital Stays And Surgery - Whenever possible choose a hospital where many
patients receive the same procedure that you need. There is no independent
source of data in most states. Ask your doctor or hospital staff for the
numbers. Ask the people who care for you if they have washed their hands.
This may make them wash more often. If you are having surgery, make sure that
you, your doctor and your surgeon all agree on what will be done during the
operation. Ask about how long the procedure will take, the potential risks
and complications, and what your recovery period may be like.

Make sure that everyone who takes care of you in the hospital knows all
important health information about you. This includes allergies, previous bad
reactions to anesthesia, and all medications you have been taking - even
over-the-counter drugs, herbal preparations and vitamins.
Insist that your surgeon write his or her initials or words such as "yes" or
"this side" (in permanent ink) on the part of the body that is supposed to be
operated on (for example, a knee). It's even a good idea to write "no" or
"not this side" on the opposite body part.
Directly before the operation, ask to make sure that every person involved
with the operation knows who you are, what operation you are having, and on
what side of the body.
Ask about any new medication you may receive. Make sure it's what your doctor
ordered.
When you are discharged, ask your doctor to explain your treatment plan,
including any changes in medications, restrictions on activity and any
therapy you may need.

***********************************

In the last newsletter I reported that the number of cases of Lyme disease
were at an all time record. And now this:

LYME VACCINE PULLED OFF MARKET
February 26, 2002 WASHINGTON (AP) - The maker of the nation's only Lyme
disease vaccine pulled it off the market, citing poor sales.

Lymerix had caused controversy in recent years, as patients who argued they
were sickened by the vaccine asked the government to restrict sales and also
filed numerous lawsuits against maker GlaxoSmithKline.

But after a year of investigation, the Food and Drug Administration had found
no proof that the vaccine was dangerous and thus did not tell the
manufacturer to end sales, an agency spokeswoman said Tuesday.

"The reason is there's just no demand for it," said GlaxoSmithKline
spokeswoman Ramona Dubose.

Lymerix had $40 million in sales its first year on the market, and hundreds
of thousands were vaccinated. But GlaxoSmithKline projected that fewer than
10,000 people would seek vaccination this year, and thus decided it didn't
make financial sense to keep selling, Dubose said.

The company's decision comes less than a month after federal health officials
warned that Lyme disease cases had reached record highs in recent years.

Lyme disease spread by deer ticks in the Northeast and certain other parts of
the country, causes fatigue, fevers and joint pain that can persist for
weeks. Some patients develop severe arthritis. If untreated with antibiotics,
it also can severely damage the heart and nervous systems.

Lyme sufferers begged the FDA to approve Lymerix, the world's first Lyme
vaccine, in 1998. It required two shots given about a month apart and a third
a year later to get about 80 percent protection from Lyme disease.

But some patients reported arthritis, muscle pain and other troubling
symptoms after vaccination. Some also claimed doctors hid information about
possible side effects before administering the vaccine, and then often
dismissed symptoms.

Many of the alleged symptoms were similar to Lyme disease itself. While the
vaccine is 80 percent effective, it's not that protective until all three
doses are given - meaning some people with symptoms could have Lyme instead
of a vaccine reaction. Or, because arthritis is so common that 15 percent of
the population is afflicted, they could have arthritis unrelated to
vaccination.

In one safety study, 5,000 people got Lymerix and another 5,000 got dummy
shots. Two percent of each group developed arthritis like symptoms,
reassuring to the FDA.

Still, the Centers for Disease Control and Prevention re-examined all 905
possible side effects reported to the government between 1998 and July 2000,
to see if regulators had missed any signs of real trouble.

The CDC's results, just published in the journal Vaccine, found no signs that
arthritis or other side effects were being caused by the Lymerix vaccine. It
did, however, find 22 cases of allergic reaction to the vaccine, and said
scientists would continue to assess reported side effects closely.

Copyright 2002 The Associated Press. All rights reserved.

*************************************

For all of you on the Remicade waiting list, you are certainly not alone
according to the following article about our fellow Canadian PAers.

COSTLY ARTHRITIS DRUG STIRS CONTROVERSY
End of special access program leaves patients wanting more Remicade - By
Celia Milne

HALIFAX - Canadian rheumatologists are caught between a rock and a hard
place.
While new biologics have the potential to take some of their worst rheumatoid
arthritis patients from the wheelchair to the dance floor, high cost and red
tape are hampering these efforts.
To make matters worse, many patients who have tasted the dance-who had access
to it under a special pre-marketing program-are now faced with disability all
over again.
"I've had patients who've called crying, saying 'They can't make me go back
to the way I was,' " said Dr. Dianne Mosher, a Halifax rheumatologist and
president of the Canadian Rheumatology Association.
At the centre of the access controversy is infliximab (Remicade). The
Remicade story reminds government, industry and doctors of the need to sort
out access problems as new, exciting and expensive medications explode onto
the scene. "Price tags are going up for all diseases. How is society going
to deal with that? asked Dr. Mosher. Remicade is indicated for moderate to
severe rheumatoid arthritis and Crohn's disease. Treatment for the average RA
patient costs $18,000 a year. Before it was approved for sale in Canada,
Remicade was provided free of charge to thousands of patients by Schering
Canada Inc. under a special access program set up by Health Canada. This
happens with many new drugs, but what Schering didn't know was that it would
take another two years for the drug to be approved.
Altogether, Schering spent $55 million on the special access program, which
ended in the summer of 2001.
Now that Remicade is on the market, new accessibility problems have arisen.
The provincial formularies are reluctant to list it (so far only Saskatchewan
has listed the drug, with restrictions), and insurance companies often won't
pay because treatments are done in a hospital setting.
Dr. Mosher estimated that one-third of her patients on Remicade are falling
through the cracks and unable to find a way to pay for the drug.
Randy Steffan, a spokesman for Schering, said he understands the reluctance
of provinces to pay for the drug. "They got burned by the COX-2s," said
Steffan, referring to the new NSAIDs that took the market by storm two years
ago. When the COX-2 drugs were approved in Canada in late 1999, annual
expenditures almost doubled on NSAIDs to $78 million that year, compared to
$44 million in 1998, according to an article in the Journal of Rheumatology.
How much could Remicade and the other new biologic, etanercept (Enbrel), end
up costing? It is estimated that about 213,000 Canadians have arthritis
severe enough to qualify for Remicade or Enbrel. If even 25% of them end up
taking these drugs, the bill would be more than $1 billion. This cost would
be split between provincial health plans (35%) and private payers.
Arthritis patients across the country have been lobbying their provincial
health ministers to include Remicade on the formularies. This massive lobby
effort has now come under a microscope. On Nov. 27, Wendy Mesley's CBC TV
program Disclosure accused Schering of luring desperate rheumatoid arthritis
patients into its marketing campaign, first by giving them free Remicade for
two years and then by withdrawing the drug and telling them the only way to
continue getting it was to lobby governments to add Remicade to their
formularies.
One patient told Mesley that when she called Schering's reimbursement agency
she was told she would be provided her treatment on the condition that she
wrote letters to the health sciences centre, the minister of health and Blue
Cross.
"The special access program was not a marketing program," said Steffan from
Schering in a phone interview. "It was a legitimate access program for
patients with serious or life-threatening illness."
Dr. Christopher Penney, a clinical rheumatologist at the Rocky-view Hospital
and the Peter Lougheed Centre in Calgary, and associate clinical professor of
medicine at the University of Calgary, called the CBC program "unfair." "My
patients felt lucky to have been in the (free) program," he told the Medical
Post in an interview. As for the details of the lobby and how it originated,
he is not concerned: "The ends justify the means. I have to find some way to
get the drug to my patients." Dr. Mosher said she feels the same way.
"Without special access many would not have received the therapy until now.
Damage occurs early in rheumatoid arthritis, so clearly there has been a huge
benefit."
Remicade is not a panacea. So far throughout the world, about 130,000
patients have tried it, and monitoring has shown rheumatologists must use
caution when prescribing it.
Surveillance by the Food and Drug Administration in the U.S. showed it can be
fatal in patients with pre-existing coronary heart failure. Also,
tuberculosis and other serious infections-some of them fatal-have been
reported in patients on Remicade. It is not recommended for patients with
disorders of the central nervous system such as MS, myelitis or optic
neuritis.
Health Canada has sent several letters to Canadian doctors warning of its
adverse effects.
"It is not a cure-all," said Dr. Penney. "It is for the toughest of the
tough."
Dr. John Kelsall, a rheumatologist at the Mary Pack Arthritis Centre at the
Vancouver General Hospital and a clinical assistant professor at the
University of British Columbia, has been prescribing Remicade sparingly. He
recognizes that it's "horribly expensive."
"There are older, traditional, less expensive medications that work well.
This onus is upon us to use the old-fashioned medications that are tried and
true."
Dr. Kelsall is glad to be able to offer his patients Remicade, even though
he's not sure whether the special access program was totally altruistic.
"I agree it is somewhat manipulative," he said. "They give us a bunch of free
drugs which we gladly accept. They want us to have a taste, to create a stir
and then people will lobby." On the other hand, he said the benefits are
huge: "My patients have had access for a year and a half and I've gained
experience. It is important as a doctor to try to get a handle on the disease
and offer choices, especially to those in whom all other choices are gone."
Ironically, when all is said and done, lobby efforts might not have the
effect of speeding up reimbursement, as provinces are careful not to give
special status to the squeakiest wheels.
Margaret Baker, a spokesperson for the Saskatchewan provincial drug plan,
said that lobbying made no difference in the decision to cover Remicade. "We
received about 100 letters, but no, they wouldn't have an effect," she said.

*********************************

Hope you found this issue informative, and your comments are always welcomed
and appreciated.

Good health to all.

Jack Nicholas
Newsletter Editor
Issue 2002 3/4/02 -4