For arthritis sufferers, fighting the pain becomes a way of life.
Sunday, Feb. 14, 1999
By Rob ert Steyer of the Post-Dispatch
Even the routine tasks of keeping records, using a calculator and
filling out forms eventually proved too much for Roxie Bureman.
So four years ago, at age 43, Bureman retired from her job at a
title company in St. Louis, surrendering to the shooting pain
and aching joints of severe arthritis.
''I would kill to have a day without pain,'' said Bureman, as
she tries to cope with rheumatoid arthritis, a mysterious disease in which the
body's immune system backfires. ''It has spread all over, even in places I
didn't realize were joints.''
The pain of arthritis is an increasingly common fact of life. As this nation
grows older, the number of patients is growing - to 43 million last year from
35 million in 1985. Government researchers predict 59.4 million by 2020.
At the same time, arthritis sufferers are taking more medications. They
frequently switch from one drug to the next because painkillers lose
effectiveness after a while or their side effects become debilitating.
Bureman, for example, has taken medications like most people sample snack
food.
''I used to buy ibuprofen at Wal-Mart, 500 pills at a time,'' said Bureman,
referring to a generic, over-the-counter drug that competes with aspirin. She
took 12 to 15 pills daily.
Since then, she has tried a batch of stronger prescription painkillers, but
many times their benefits were overwhelmed by stomach distress and
intestinal bleeding. She took an ulcer drug to fight the side effects.
The most popular painkillers are nonsteroidal anti-inflammatory drugs
(NSAIDs), which include aspirin, nonprescription drugs such as Advil and
stronger prescription products. But they can cause ulcers, especially when
used frequently. The elderly are most vulnerable. A Stanford University study
attributes 107,000 annual hospitalizations and 16,500 yearly deaths to side
effects from NSAIDs.
''This is an enormous market with a true unmet medical need,'' said Richard
U. DeSchutter, chief executive of G.D. Searle & Co., the Monsanto drug
subsidiary. ''For every $1 spent for NSAIDs, you have $2.30 spent for side
effects.''
Four weeks ago, Searle began marketing Celebrex, which has a different
chemistry than NSAIDs. It offers the same pain relief, but tests show that it
causes fewer gastrointestinal side effects.
''There is a tremendous amount of dissatisfaction with existing therapies,''
said Al Heller, Searle's president and chief operating officer.
There is also a tremendous potential for profit. Based on new prescriptions,
Celebrex is off to a faster start than any drug except the impotence pill
Viagra. Securities analysts toss around the words ''billion-dollar yearly sales''
with ease.
Last year, companies sold about $6 billion in brand-name prescription
NSAIDs, including about $2 billion in the United States, De Schutter said.
The emergence of Celebrex and other new drugs could double worldwide
prescription sales to $12 billion within five years, he said.
For Searle's sake, De Schutter is counting on people like Bureman, who
lives in Washington, Mo., and even more so on people with the most
common form of arthritis. Known as osteoarthritis, it reflects the wear and
tear of joints and bones. In the United States, the nearly 21 million
osteoarthritis patients outnumber rheumatoid arthritis sufferers by a ratio of
10-1.
Bureman just started on Celebrex, knowing that it won't stop the tissue or
joint damage caused by rheumatoid arthritis, a disease that strikes young and
middle-age adults with malicious whimsy. The disease confounds doctors.
That's why she visited several specialists. She had surgeries on a nerve in her
arm and nerves in her hand before a doctor correctly diagnosed her disease
four years ago.
She took more medications - a malaria drug, a cancer drug and a steroid -
that are often prescribed for rheumatoid arthritis. And let's not forget the
injections of gold salts, which caused an allergic reaction.
Bureman also has tried a narcotic painkiller and a prescription sleep drug, so
Celebrex is just the next marcher in the medication parade.
''When every part of you hurts, you don't know how to lie in bed,'' she said.
''I just want a day without pain.''
Patients are well-informed
The Celebrex story is a tale of potential profit, but it's also one about
persistent pain. The drug is entering a competitive, churning market. There
are about 20 brand name prescription NSAIDs, plus many generic drugs
and over-the-counter analgesics.
Patients keep vigilance over new research. They read medical magazines
voraciously. They share experiences at community groups organized through
the Arthritis Foundation. And they quiz their doctors constantly.
''They get barraged by new developments that aren't particularly innovative,''
said Dr. Robert W. Hoffman, director of immunology and rheumatology at
the University of Missouri-Columbia School of Medicine. ''For a long time,
everybody marketed the next NSAID as a great new discovery.''
The patients keep doctors scrambling to remain current on the latest research
news.
''They come in with news clippings, and we try to sort out with them what the
new drug does,'' Hoffman said.
Dr. Stephen Spurgeon, chief medical officer of United Healthcare of the
Midwest, a managed care organization, said, ''Arthritis is the most articulated
concern by my Medicare patients. More than cancer. More than heart
disease.''
But after trying many drugs, some patients look to alternative treatments.
Some are harmless; others can be dangerous.
''Most people get information from the National Enquirer before I get
information from the New England Journal of Medicine,'' said Dr. Daniel J.
Murphy, a medical director for Group Health Plan.
Arthritis patients don't apologize for their behavior, because their pain is both
intensely personal as well as a shared experience.
You can see the face of pain as Lucy Nile, 40, of Frontenac, winces getting
up from her sofa to tend to her young son. ''It is hard enough in church to
stand up and sit down,'' Nile said. ''Holding my son in church is more
difficult.''
Drug side effects have taken a harsh toll since she was diagnosed with
rheumatoid arthritis 14 years ago. She had a miscarriage because she took a
cancer drug.
She takes calcium supplements because a steroid she has used for years has
helped cause osteoporosis, the brittle bone disease found most often in older
women. The fingers on her right hand tilt to the right, a sure sign of
rheumatoid arthritis.
Nile talks about the NSAIDs she has taken in the casual way someone might
discuss a grocery list: Advil. Aleve. Feldene. Naprosyn. Motrin. Voltaren.
Daypro. Arthrotec.
She has tried gold-salt injections, a drug for organ-transplant recipients and a
highly touted new drug for rheumatoid arthritis that worked well for only four
weeks. Next on the formulary is an anti-malaria drug.
''I can't do the things I want to do,'' she said. ''Move furniture. Ride my bike.
Dance.''
You can hear the voice of pain in the comments of Debbie Rupp of
Florissant, who moves slower than the average 45-year-old. By the time her
rheumatoid arthritis was diagnosed 16 years ago, she was ready for a hip
replacement.
Rupp has fought through her disease to give birth to four children, whose
ages now range from 14 to 24. But she recalls vividly the difficulties of
child-rearing.
''There were times when I had to stay in bed,'' said Rupp, a pharmacist's
assistant. ''I couldn't change their diapers. I had trouble feeding them. I
couldn't hold them.''
Doctors attributed the periodic discomfort she felt as a youngster to
''growing pains.'' As a young adult, several visits to emergency rooms for
swollen, painful and stiff joints escaped an accurate diagnosis.
She has sampled the vast menu of drugs, suffered the usual side effects and
continued switching medications. She also was diagnosed with lupus, a
member of the arthritis family, which interfered with some medications for
rheumatoid arthritis.
''God made me different, I guess,'' said Rupp, whose only relative with
rheumatoid arthritis is a great aunt. ''It's fate.''
The piano as therapy
Despite their weak and inflamed
joints, and despite their frustration
with medications, many arthritis
patients compensate by
strengthening their will.
Roxie Bureman did it by starting a support group that does water therapy -
standing shoulder deep in a swimming pool and doing exercises.
''It keeps you active,'' she said. ''It helps keep you mobile.''
Lucy Nile did it by starting a support group for young adults when she was
working as a chaplain at St. Mary's Medical Center in Richmond Heights,
and serving as a volunteer for the Arthritis Foundation.
Before that, she kept her pain to herself.
''I didn't want to tell friends or co-workers about it,'' Nile said. ''I didn't want
people to treat me differently or feel sorry for me.''
Others, like Colleen Kelly of Maryville, Ill., fight through the pain by
challenging their disease and their bodies.
She doesn't play fast-pitch softball anymore, and she doesn't rope cattle like
she did for a couple of years. And cycling is no longer part of her athletic
repertoire.
But Kelly still goes hiking in places such as Yosemite National Park and
Hawaii, knowing full well that her knees will pay the price afterward.
''You learn to make adjustments,'' said Kelly, 42, who has osteoarthritis that
evolved from a degenerative joint condition in her knees. In the past 11
years, she has had seven knee surgeries and a comprehensive tour of pain
medication.
Kelly's adjustments extend to life and work. She bought a split-level home,
and she avoids flying into airports that lack jetways connecting the planes to
the terminal.
''I'm afraid that if I had to walk down stairs when I exit a plane, I'd wipe out
all of the passengers in front of me,'' she said.
And others fight, or at least try to neutralize, their arthritis through work.
Annette Burkhart has been teaching music for 25 years, including the past
eight years at Washington University.
She performs 25 to 30 piano concerts a year - solo or with accompaniment
- even though she has had rheumatoid arthritis for 10 years. Various
medications have caused stomach problems. One made her hair fall out, and
her doctor had to monitor her liver to make sure the treatment didn't do
more damage than her disease.
Burkhart said her disease is more worrisome for impairing range of
movement in her fingers than for causing pain. She said her doctor told her
that pianists with rheumatoid arthritis don't have the gnarled, distorted fingers
of many patients because their muscles are so strong.
''I can teach until I'm 90,'' said Burkhart, who just turned 50 and who usually
takes a cortisone shot before a big performance. ''I'm going to play as long
as I can play well, even if they have to wheel me up to the stage.''
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