Side effects of prescription drugs can be reported and studied on Web sites

May 13, 2013

A few years ago, I developed a painful infection. My doctor prescribed an antibiotic and a second drug to alleviate the agonizing, burning sensation. Despite the medicine, my misery increased. After a desperate call to my doctor, I deduced that my worsening symptoms were the result of the second medication, not the infection.

I’d been warned that the pain drug was likely to turn my pee orange but not that it might make me nauseated and headachy. When I stopped the medication, I felt better almost immediately.

All drugs have the potential to cause side effects, but doctors aren’t always adept at informing patients about them, says Joe Graedon, a pharmacologist and author of more than 15 books about drugs, including “Best Choices From the People’s Pharmacy.”

The Food and Drug Administration requires every prescription drug to come with a leaflet describing possible side effects, but this document is mostly intended for medical professionals.

“It’s not written in a way that’s easy for patients to understand,” says Maria Marzella Mantione, a pharmacist and associate clinical professor at St. John’s University in New York. A package insert might list dozens of adverse effects, but it won’t tell you which ones are most likely to happen to you, Mantione says.

Several Web sites aim to help. Graedon’s People’s Pharmacy site provides detailed information about side effects and a place for patients to share their experiences with various medications. For instance, a class of blood pressure drugs called angiotensin-converting enzyme (ACE) inhibitors is known to provoke a dry, tickly cough, and yet doctors often neglect to warn patients about this, Graedon says. People suddenly develop an incessant cough, but they don’t realize it’s being caused by their blood pressure medicine, he says.

The FDA collects data on side effects via its MedWatch program. Anyone — doctors, pharmacists, nurses, patients, family members — can report an adverse drug event via the program’s Web site or the new MedWatcher app. That app also allows you to view safety data on your medications and subscribe to updates on specific drugs. “If a new scientific report comes out about your drug, you’ll be alerted right away,” says Clark Freifeld, a computer scientist at Children’s Hospital Boston and a founder of Epidemico, the app’s developer.

AdverseEvents, based in Healdsburg, Calif., compiles MedWatch data into a searchable database. At the company’s Web site, you can look up information on your drug, including the 10 most commonly reported side effects and the average age and the sex of patients who have had an adverse reaction. The site also allows visitors to type in a specific side effect and find out which drugs have been associated with it.

The RxIsk Web site also presents MedWatch information in a searchable, user-friendly format, and it can help you figure out if the drugs you’re taking are affecting your skin, hair or nails, or if they’ve been linked to violent behavior, suicide or sexual side effects. The RxIsk reporting tool walks users through a list of questions designed to assess the likelihood that a symptom is actually related to the drug. Based on these answers, the site generates a risk score and a report that patients can share with their health-care provider.

“This is a report we’re keen for you to take to your doctor or pharmacist to initiate a conversation,” says the site’s founder, David Healy, a psychiatrist and author of “Pharmageddon,” a book critical of the pharmaceutical industry. Healy was one of the first experts to warn about the potential for antidepressants to increase the risk of suicide and other serious side effects. He says his mission with RxIsk is to ensure that doctors and patients discuss potential drug side effects.

Such conversations are essential, says David Stockwell, a physician at Children’s National Medical Center who has worked with the FDA on projects for detecting adverse event. While sites such as those run by RxIsk, AdverseEvents and the People’s Pharmacy can give you general information about your drugs, they’re just a starting point, Stockwell says. “I’d never discourage someone from seeking out information, but it can be difficult to separate out what’s most relevant to you, and that’s where your doctor and pharmacist can help.”

Before you start any new drug, Stockwell advises asking your doctor or pharmacist two questions: What’s the benefit of this medication? And what are the potential risks? It’s also important to ask your pharmacist which side effects are most dangerous and how you will know if they’re happening to you.

Be sure that your pharmacist is aware of your medical history, including such conditions as cancer or diabetes and side effects you’ve experienced. And discuss the other drugs you’re taking. In an age of ubiquitous computers, you might assume that your doctor or pharmacist will check for drug interactions before dispensing a drug, but that’s not always true, Graedon says.

Your medical records aren’t synched with your prescription records at the pharmacy, and even when the computer flags a potential problem, a pharmacist or doctor may overlook it, because of “alert fatigue.”

“It’s the cry-wolf phenomenon,” Graedon says. Many computer systems throw up so many irrelevant alerts and warnings that it becomes easy for even the most careful doctors and pharmacists to dismiss important ones.

But there’s an easy way to protect yourself. “Always carry a list of all the medications you take, and share that with your pharmacist,” Mantione says. “If you’ve filled three prescriptions from my pharmacy, those are the only ones I can see. I don't know about the one you mail-order.”

Tell the pharmacist about everything you’re taking — drugs, vitamins, minerals and supplements. Even nonprescription meds can have side effects or interact badly with other drugs. “You need to disclose everything you’re taking,” Mantione says. “It could save your life.”

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