Less than two-thirds of RA patients in a new study took their medications as directed, which may be due to doctor-patient miscommunication and intolerable side effects.

Annette Beach limped into the doctor’s office, dragging her swollen leg and leaning on a crutch.

Every Tuesday, Beach, a freelance writer, had been taking methotrexate, a common rheumatoid arthritis (RA) medication. But for two months she had avoided her weekly doses without telling her doctor and was now in significant pain.

“The one leg ballooned up – it just got inflamed,” Beach said. “It looked like an elephant leg on one side.”

“I was unable to take steps,” she added. “I was like Igor, limping and dragging a leg.”

Beach’s experience is not an isolated incident. Only about one-fifth of RA patients take their medications correctly – and then only 80 percent of the time, according to a small study published in Arthritis & Rheumatism. Left unchecked, rheumatoid arthritis can damage joints beyond repair, causing debilitating pain and deformities. Experts suggest that harsh drug side effects and poor doctor-patient communication may be behind these medication lapses -- called "noncompliance" by doctors.

For the study, scientists at the University of Texas MD Anderson Cancer Center followed 107 people with RA for two years, tracking their use of non-biologic disease modifying anti-rheumatic drugs, or DMARDs. The research focused on an ethnically diverse and low-income population, almost half of whom had not completed college.

The researchers did not look at why patients were failing to take their medications correctly. However, DMARDs often have serious side effects -- such as liver problems, hair loss, nausea, seizures and blurred vision -- which was why Beach decided to quit taking methotrexate. “It was a terrible experience,” she said. “It was like putting flames down my throat. I got to a point where I decided, I’m not going to do this anymore.”

How - and Why - to Talk With Your Doctor About Your Medications

It was almost a decade ago that Beach went off her meds. Now that she is older, she said experience has taught her that making changes to a drug regimen without consulting a doctor can be dangerous. “I didn’t tell anyone, and I pretended that I was still on methotrexate,” she said. “It was just stupid on my part.”

Poor communication between patient and doctor may be a factor in the low rates of treatment compliance. A lot of people feel that their docs aren’t going to listen to them anyway, so they just do things on their own, Beach said.

“I say the biggest reason for patients choosing to get off their meds and not telling their doctors is they feel their doctors don’t have enough time for them,” she added. “The appointments go so fast. They’re really impersonal.”

If you have an issue with medication side effects, bring it to your doctor's attention. Here are eight tips from Sonali Desai, MD, Director of Quality in the Division of Rheumatology at Brigham and Women’s Hospital about how to work with your doctor to make sure you're getting the most effective treatment:

Make a list and prioritize. Write down questions and issues you want to address during your doctor’s visit, with the most important at the top to avoid wasting time. You are your own best advocate.

Keep a journal. Track your daily symptoms in a journal and show the record to your doctor, Dr. Desai said. Note any possible side effects from medications, and write down your goals – like being able to climb a flight of stairs. This helps the doctor focus on what’s important to you.

Bring your medical records. Include hospitalization records, clinic notes, laboratory test results, and contact information for your old doctors.

Bring your medications. If you've forgotten the strength and dose of what you’re taking, the doctor may be unable to adjust your medications. Having the medication with you leaves less room for error. Don’t forget to bring over-the-counter pills and supplements as well.

Prepare time for the visit. Doctors are often late because clinic visits are too short and previous appointments go overtime. To account for schedule creep, don't make other commitments right after a doctor’s visit.

Bring a family member or friend with you. Another person may be able to report to the doctor more objective information about your symptoms that you may not notice yourself, Desai said. The other person may also ask questions you didn’t consider.

Do your research. Read up on the possible complications of rheumatoid arthritis, your treatment options, and side effects of your medications.

Get to know the office. Have a conversation with the receptionist, get to know the nurses at the office, and be respectful of the doctor, Beach said. Building relationships with your healthcare providers can make your experience smoother and more enjoyable.