Taking an active role in your medical care is always a good idea. But if you have asthma, it's essential.
"If you don't control your asthma, it will control you," says allergist Jonathan A. Bernstein, MD, associate professor of clinical medicine at the University of Cincinnati College of Medicine.
While it can't be cured, good treatment allows most people with asthma to live full, normal lives. But taming your asthma isn't something you can do on your own. You'll need to work closely with your doctor to devise a treatment plan that fits in with your life.
Since your condition can be affected by so many things -- the weather, your diet, and your medication, to name a few -- it's crucial that you and your doctor respond quickly to changes in your symptoms. Perhaps more than many other diseases, asthma requires a good partnership for good treatment.
"Here's the bottom line," Bernstein tells WebMD. "A person's relationship with his or her physician really determines whether the asthma is under control or not."
But how do you know if you're getting the best care possible? How can you find a specialist whom you like and trust? If you want a healthy life and good control of your asthma, what should you expect from your doctor -- and what should he or she expect from you? We asked some experts to explain the key to a healthy partnership.
A Good Partnership Helps Control Asthma Symptoms
Experts agree that working together with your doctor can make a big difference. The current asthma treatment guidelines from the National Heart, Lung, and Blood Institute state that the doctor-patient partnership is the "cornerstone" of good treatment. The guidelines cite many studies showing the success of patient education in using inhalers, reducing exposure to allergens, and treating emergencies.
But unfortunately, not enough people are partnering with their doctors. In a survey conducted by the CDC in 2001, less than half of people with asthma reported that they had a routine checkup with a doctor in the last year.
Losing control of your asthma can lead to serious complications. According to the Asthma and Allergy Foundation, asthma is one of the most common and most costly illnesses in the U.S.; 20 million people have it. Every year, asthma hospitalizes around 500,000 people and kills more than 5,000. A lot of that suffering could be avoided if people had better control over their condition, according to the National, Heart, Lung and Blood Institute.
More than ever, asthma experts are stressing the importance of control and prevention.
Bernstein says that the old way of evaluating asthma -- with categories like "mild," "moderate" and "severe" -- is becoming outdated. "We now know that if a person with so-called 'severe' asthma is properly managed, he or she can really be a mild case," he tells WebMD. "And people with 'mild' asthma that isn't controlled can be quite sick."
Asthma can be tricky because its symptoms can change a lot over time. If you move to a new home or get a new job, you could encounter new irritants and allergens. Your symptoms might change if you start taking medicine for other health conditions. You may find that conditions such as arthritis can make it harder to use your inhaler than it once was. You and your doctor will need to adjust your treatment to reflect these changes. But that won't happen if you're not making regular appointments.
Do You Need to See an Asthma Expert?
Sometimes, yes. It's hard to tell. In fact, you may be the worst judge of your own condition.
"There are patients with significant asthma who have had it so long that they get used to the symptoms," says Phillip E. Korenblat, MD, an allergist and Professor of Clinical Medicine at the Washington University School of Medicine in St. Louis. "They don't realize how sick they are, and just accept the limitations on their lives."
The evidence backs him up. For instance, in a recent poll sponsored by the Asthma and Allergy Foundation of more than 4,500 adults in the U.S., 88% of people with asthma said that their condition was "under control." However, the details suggested otherwise. Fifty percent said that asthma made them stop exercising during a regimen; 48% said that it woke them at night. Neither should be happening if your asthma is really under control.
So you need to look at your situation as objectively as you can. You should see a specialist if:
Your symptoms are restricting your life. "We believe that your asthma isn't under control if it's affecting your work, sleep, or play," says Angel Waldron, spokesperson for the Asthma and Allergy Foundation of America. "It's time to get help if your symptoms are interrupting your sleep at night, making you miss work or leave early, or limiting your physical activity."
You need medicine every day. "I think that anyone with asthma who requires daily medication should be seeing a specialist," says Korenblat.
You're not getting better after three to six months of treatment.
Other illnesses may be affecting your asthma. Many conditions like sinusitis, lung disease, and gastroesophageal reflux disorder (GERD) can worsen your asthma.
- You've had an emergency. "If you've had to go to the emergency room because of your asthma, I think that's a good sign that you need to be seeing an expert," says Korenblat.
Is Your Primary Doctor Enough?
In some cases, yes, especially if your symptoms are mild and your asthma is under control. But checking in with an expert -- maybe just once a year -- wouldn't hurt. If your asthma is any worse, you really need to see an expert.
Whatever you do, don't settle. If you're not getting better, it's time to see a specialist. You deserve the best treatment you can get.
"A lot of people stick with doctors who aren't helping," says Norman Edelman, MD, a pulmonologist and Chief Medical Officer for the American Lung Association. "You may love your family doctor, and you may really appreciate that he or she knows you and cares about you. But that doesn't mean that he or she is all that knowledgeable about asthma."
"I don't mean any disrespect to all of the smart, good general practitioners out there," says Bernstein. "But by their nature, they're not specialists. They're looking at everything -- hypertension, diabetes, heart disease, respiratory problems, depression, thyroid problems, and the whole spectrum of disease. They can't be experts on every subject."
Once you get your asthma under control, you can go back to your regular doctor, says Korenblat. Then you can just have checkups with your specialist. How often depends on your situation. Once a year is fine if your asthma is well controlled, Edelman says.
Tips for Finding a Specialist
There are three types of doctors who specialize in treating asthma:
Allergists and Immunologists treat allergies, such as the ones that affect asthma, and other problems with the immune system.
- Pulmonologists focus on problems with the lungs and airways, including conditions like asthma.
Any of these specialists should be able to help. But there are cases where seeing one over another might make sense. For instance, if you want to be tested for allergies, see an allergist or an immunologist. If you want advanced testing of your lungs, or if other lung diseases might be affecting your asthma, you should see a pulmonologist.
There are a lot of different ways to find an expert. You can ask your health care provider, your health insurance company, or a local hospital for a recommendation. You can also just look in the Yellow Pages. Make sure that anyone you see is licensed and board certified as an allergist, immunologist, or pulmonologist.
Some nonprofit organizations can help you find a specialist. Both of the following have "physician finders" on their web sites to help you find a licensed expert in your area.
- The American Academy of Allergy, Asthma & Immunology (AAAAI)
Web site: www.aaaai.orgT
- he American College of Allergy, Asthma and Immunology (ACAAI)
Web site: http://www.acaai.org/
Toll-free physician referral line: 800-842-7777.B
But one of the best ways to find a specialist is still word of mouth.
"Asthma is a really common disease, so you'll meet a lot of people who have it," says Hugh H. Windom, MD, associate clinical professor of immunology at the University of South Florida. "If you keep hearing the same specialist recommended over and over again, that's probably the person you want to see."
What to Expect from Your Doctor
As a patient, you have the right to the best treatment you can get. Here are some of the things that you should expect your doctor provide.
A proper diagnosis. "We see a lot of people who have been diagnosed with 'asthma' who don't actually have it," says Korenblat. Instead, they were misdiagnosed by a doctor who never did all of the necessary tests, like basic lung function analysis.
"We're now in the scientific-evidence based era," says Bernstein. "We wouldn't treat people for high blood pressure without making a diagnosis. It should be the same with asthma."
Your doctor should also work hard to figure out which specific allergens or irritants are causing you problems. This may involve allergy testing.
A plan. You and your doctor should come up with specific short-term and long-term goals for your treatment. You should also develop an action plan. This is a written document that spells out what to do if your symptoms worsen.
Explanations. In your first appointment, your doctor should go over the causes of asthma. When it comes to treatment, your doctor shouldn't just tell you what to do. He or she should also explain why you need a particular treatment and why it will help.
"Compliance is really improved if the patients know why their doctor has prescribed a certain treatment rather than just being told to do it," says Windom.
Clear instructions. Learning how to use a nebulizer or inhaler can be tricky. "Taking asthma medications isn't always simple," says Windom. "You don't need instructions on how to swallow a pill, but you do need instructions for how to use an inhaler."
So your doctor should demonstrate how to use any devices -- including peak flow meters -- and make sure that you understand. Edelman says that your doctor should watch you take your medicines at least once.
Also, make sure your doctor explains when to take your medicines. "Sometimes, people don't really understand what their medicines do," says Edelman. So make sure you know which ones are for long-term control and which are for quick-relief.
Openness to your questions. Your doctor should always give you the time to ask questions and take the time to answer them.
"Questions from an educated patient should not be intimidating to a good physician," says Bernstein. "If a physician gets defensive when you ask questions, he or she should either read up more or get out of the job. If your doctor isn't giving you the answers you need, then you may need to see a new doctor."
Sensitivity to your circumstances. No two cases of asthma are the same. Your doctor should keep your specific situation in mind when developing your treatment. For instance, are other medical conditions or medications affecting your treatment? Are you exposed to allergens that you can't avoid? Your doctor should be sensitive to your situation and adapt the treatment so that it fits with your life.
One of the touchiest issues is money. "Doctors can be awfully quick to write prescriptions, but we don't always think about the costs," says Bernstein. Asthma medications can cost hundreds of dollars a month. If price is an issue for you, your doctor may be able to help. See if you could use a cheaper medication. Bernstein says that your doctor may be able to provide you with some free samples. Or you could see whether you qualify for the assistance programs that some pharmaceutical companies offer.
- Thoroughness. "When you've been seeing a specialist, I think every once in a while, he or she should treat an appointment as if it's your first visit," says Edelman. "You start again from the beginning, going over your complete history, your symptoms, and the medicines you take." It's a good way of seeing the big picture, Edelman says, and of finding out things that you might forget to mention.
What Your Doctor Expects from You
Your doctor isn't the only one with responsibilities. So what do you have to provide to keep up your end of the partnership? Here are some items your doctor will want from you:
Details. Go in armed with information. Write down the names of any medicines you take. Write down the circumstances of your asthma attacks. Had you just taken any medicine? Gone out for a walk? Been up cleaning the attic? You might even want to keep a symptom diary, since it's an easy way of keeping track. Also, consider larger issues. For instance, is your asthma having an impact on your mood? Is it making work difficult?
Your expectations from treatment. Be specific. "You need to say to your doctor exactly what you want to get out of treatment," says Korenblat. What do you want to be able to do that you can't do now? Are you just trying to sleep through the night without a coughing fit? Do you want to play softball in the fall? Do you want to survive a party at the home of a cat-owning in-law? Once you explain the details, your doctor will have a better idea how to help.
Questions. If you have any doubts about your treatment, ask. If you don't think that you'll be able to take the medication as prescribed, say so. Then your doctor can work around the problem.
Adherence to the treatment plan. Once you and your doctor have come up with a treatment plan, your job is to stick to it -- and that means every single day.
"A lot of the time, people with asthma think that if they're feeling OK, they can stop taking their medicine," says Bernstein. But that's not the case. Asthma needs consistent treatment, just like any other chronic disease.
"We always encourage prevention over treatment," says Waldron. "A lot of people who need to use their rescue inhalers wouldn't need to if they could stick to their daily control medication."
If you decide that you don't like some aspect of your treatment plan, talk to your doctor. Don't ever make changes without his or her OK.
Make sure you understand how to take your medication and use any devices. Remember that different inhalers and nebulizers have different instructions. If you need to use more than one inhaler, make sure you know which order to use them in. Understand which medicines you need to take every day and which ones are for times when your symptoms worsen.
Environmental control. This should be an obvious one, but even people with bad asthma may be reluctant to make commonsense changes in their lives.
"Patients have to be accountable," says Bernstein. "I'll see people with asthma who come in and say, 'Cure me.' But then it turns out that they sleep every night with a cat on their face. I try to compromise with people, but they have to be willing to modify their lifestyles, too."
Honesty. "Patients have to be forthright," says Korenblat. "That's especially true when we're talking about whether you're using your medications." If you haven't been taking your medicine, 'fess up. You shouldn't worry about your doctor being annoyed, Korenblat says. You just need to explain why. Are you having trouble remembering? Do you feel like you don't need it anymore? Do you not like the side effects? Once you make the reasons clear, your doctor may be able to make changes to resolve the problem.
Assertiveness. "People need to be proactive with their physicians," says Bernstein. "They need to ask questions and expect answers."
This advice applies to every aspect of your life. You need to stand up for yourself with your family, your friends, and your co-workers. If you have to banish smokers outside, do it. If you have a child with asthma, make sure to meet with his or her teachers and school nurse, says Korenblat. They need to understand the condition and know what to do in an emergency.
"People with asthma sometimes have to be a little selfish," says Edelman. "You need to take control of the situation."
Don't Be Afraid to Take Control
One big obstacle to controlling asthma is frustration. Coping with a chronic illness can wear you out. You may just get sick of dealing with it.
"People get frustrated with the costs of medicines and they get frustrated with having to take them every day," says Windom. "Sometimes, they just give up on seeing the doctor."
But while the feeling is understandable, you can't afford to take the risk.
"Asthma is a life-threatening disease," Windom tells WebMD. "If you stop going to the doctor, or try treating your condition on your own, it can be very dangerous."
So if you're one of the many people who have surrendered to asthma, it's time to fight back. Don't settle and allow your symptoms to rule your life. Go back to your doctor, or partner with a new specialist. Treatment may also be better than you remember.
"There are so many more treatments now," says Waldron. "If you tried to manage your asthma in the past and didn't have much success, now is the time to try again. There have been a lot of new developments that can really help control the symptoms."