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Don't take away our drugs
With class action lawsuits against the makers of Vioxx and Celebrex looming, patients are left to weigh the risks of continued use to relieve their pain
Mario Toneguzzi
Calgary Herald

CREDIT: Tim Fraser, Calgary Herald
Cheyne Parkinson with her prescription bottle of Celebrex, which she uses to treat her arthritis. Despite health warnings, she vows to continue using it.

Cheyne Parkinson has had osteoarthritis since she was diagnosed at the age of 15. Over the years, she's taken an assortment of medications beginning with aspirin when she was younger and progressing to tylenol and a variety of different anti-inflammatories.

But nothing has worked for her like Celebrex -- which falls in the class of drugs called COX-2 inhibitors.

"What it does for me? Especially on bad days. I'm very fortunate that when I have a bad day when all my joints are acting up and I'm finding it very difficult to cope (Celebrex helps)," says the 51-year-old Parkinson.

"If I take Celebrex it actually helps me function. I'm not going to say I can jump buildings and do vacuuming, but after a couple of hours I'm not so stiff that I'm crying when I'm walking going up and down stairs. It makes life much more bearable for me. It's a huge deal to me if they take it away."

And that is Parkinson's and thousands of other Canadians' major concern these days.

The COX-2 inhibitor drugs such as Celebrex, Vioxx, Bextra and Modicox have come under increasingly closer scrutiny since their use has been linked to possible increased risk of heart and stroke problems.

Vioxx has been taken off the market because of the concerns. The other medications are still available to patients.

Class action lawsuits are being pursued against the makers of Vioxx and Celebrex.

And this is causing many people a great deal of confusion and worry.

Patients are left to decide some important questions. What is the risk of developing heart problems if they continue to take the drugs? Is that risk high enough to stop them from taking the medication?

It's a simple question to answer for someone like Parkinson, who calls Celebrex a lifesaver.

"I can certainly function," she says. "I find it very difficult to stand for long periods of time. So if I were to do housecleaning or try to stand to tidy up my kitchen or iron, my joints really go into spasms. But if I take Celebrex I can actually manage to almost -- not quite, but almost -- be normal."

Parkinson took Naproxen off and on for 15 years. It's another popular medication prescribed for the past 30 years that has also been under scrutiny following reports of increased risk of heart attack and stroke with its use. She's been on Celebrex for the past three years.

"I'm constantly watching the news," says Parkinson. "It's a great concern to me even that they're considering it may be removed from the market.

"With arthritis, (medication) is hit and miss. If Celebrex or Vioxx works for you, it's absolutely incredible what it can do for your life.

"For me, because (Celebrex) is an anti-inflammatory, it makes me quite functional. I'm able to work. I'm able to do things around the home. I'm more mobile."

She's not concerned about the potential health risks.

"Why can't I take the responsibility (as a patient)? If I have a healthy lifestyle, why can't I take the chance (and continue taking the medication)?" she asks.

"I don't see them pulling alcohol and cigarettes off the market when they cause death and destruction."

Dr. Chris Penney, clinical associate professor of rheumatology in the Faculty of Medicine at the University of Calgary, says he is counselling people that they shouldn't be on the drugs unless they really need them.

"If you're taking them for minor problems like sports injuries, you probably shouldn't be taking them," says Penney. "If you're taking them for short periods of time, you're at lesser risk than long periods of time. And it really depends on the disease we're treating as to how seriously we will consider continuing on with a particular drug involved.

"Patients have to appreciate there's a risk with everything. There's a risk with walking across the street and getting run over. And there's a risk with all drugs. They all have their problems.

"It's a balancing of risks between the risk of the disease they're treating and the risk of the drug they're taking. And it's an individual type of risk estimation by the physician involved. So it varies between individuals. It's not something you can blanket say this drug is not good for anyone with arthritis."

Penney says some people taking Celebrex, for example, find it's the only drug that makes a difference for them.

"If they're being treated for something very serious and it's a matter of quality of life and they don't really have a history of cardiovascular disease, then we might weigh the risks there and say the quality of life and the enjoyment of life outweighs any potentially small risk of cardiovascular death or strokes. It's all a balancing act," says Penney.

"It's always been that way with medications because they all have their problems. The ones that have been highlighted we need more information basically about Celebrex, Bextra and COX-2 inhibitors to be able to make any blanket statements. Right now, we're just making personal risk estimations for individuals and then deciding whether they deserve to be on them or not.

"Most people are just staying on those drugs for now and just waiting for further information from studies and we're hopeful that maybe over the next six months to a year we'll have a little more information to be able to give a scientific explanation as to who should be on these drugs and who shouldn't. But right now it's based mainly on personal risk assessment and whether you think it's worth the small risk involved."

Wendy Armstrong, a health policy analyst and member of the board of the Consumers' Association of Canada (Alberta) and Pharmawatch, says "it is simply unacceptable that drugs are pulled off the market for safety or for profit purposes without information on alternatives -- both drug or non-drug -- being readily available.

"It is even more unacceptable that many effective non-drug therapies such as physiotherapy are no longer available to many people with arthritis either in the community or in long-term care settings," says Armstrong.

Both organizations are committed to working for safe, effective, accessible, affordable drug therapies and informed citizens.

"People tend to be generally far too naive and trusting related to the approval, safety, prescribing and marketing of prescription drugs. Drugs are so important for dealing with pain and disease -- but they must be evaluated and used with appropriate cautions," says Armstrong.

She says people in today's society have a tendency to "jump on every new bandwagon that comes along" and people have learned a "painful lesson" that perhaps staying with the devil you know is better than rushing to the devil you don't know.

Doug Lawson, 55, who was first diagnosed with rheumatoid arthritis in 1989, was taking Vioxx a few years ago for about a year.

While serving on the research committee of the College of Physicians and Surgeons, Lawson was able to see clinical trial data on medications.

"I started seeing these blood pressure problems. I thought I don't need this. I went back and asked to be taken off," he says.

His daily drug regimen today includes a combination of painkillers and anti-inflammatories including Naproxen, which has also been called into question for its link to increased risk of heart and stroke problems.

"Naproxen is the stop gap . . . It helps you daily. It helps with the pain you have and the swelling you have," says Lawson, who is in the pool every day and does whatever he can to increase his flexibility to improve his quality of life. "I can take it and it keeps me moving.

"When you have something like rheumatoid arthritis, it's a long haul and you know there's side-effects with the drugs you take. And it's supposed to be kind of a reasoned decision that says we know the side-effects look like this, we'll monitor you."

So Lawson has his blood work done once a month. He also checks his blood pressure twice a week.

The rheumatoid arthritis has affected every part of his life. The former chiropractor had to give up his practice because of the pain he was experiencing while doing adjustments to his patients. He has been unemployed since March 2003.

"It impacts your ability to have fun," he says. "It impacts your ability to work. It impacts your relationships.

"Not only does your income drop down but how you define yourself as a man really changes . . . Men tend to define themselves by what they do. And all of a sudden you can't do what you trained seven years to do. So that was a shock."

Lawson volunteers with the local Arthritis Society in the self-management program by training people to run those classes. Since the news of Vioxx first came out last fall, he has come into contact with many arthritis patients concerned and confused about what to do as their medications have come under scrutiny.

He's heard all the responses. The fears. The anger. The denial. The fierce stand: "Don't take my drug away from me."

"As long as you're monitoring things, then you hope you're going to deal with the side-effects," says Lawson. "You can't just start taking these drugs and ignore them because they all have side-effects. You need to identify what they are, monitor the ones and find out if there are other drugs available.

"Arthritis is a lot about coping. So you change your life . . . So you cope and you manage . . . And all of sudden you hear this. This is one more thing I don't need. It can be that little piece of panic. But then usually they wrap their head around it and say, hey, wait a minute, this is nothing new. I knew this all along."

© The Calgary Herald 2005

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