“How I Found Dr. Right—and Got the RA Treatment I Needed!”

It’s important that your doctor is someone you can work well with. One woman shares what you need to know when choosing a rheumatologist.

Health Monitor Staff

Kelly Young experienced her first rheumatoid arthritis (RA) symptom—stiff hands—when she was just 13. At the time, she had no idea that RA was to blame. It disappeared (though her finger joints would often get “stuck,” and only later did she connect it with RA).

Over the years, other symptoms came and went, as the disease attacked every major joint in her body. Once, Kelly awoke with excruciating shoulder pain that lasted for weeks before it finally disappeared. She also sprouted terrible rashes, and endured bouts of debilitating stiffness in her wrists. She never knew where pain would surface next.

Eventually, Kelly’s podiatrist—whom she’d been seeing because of foot pain and swelling—suggested she see a rheumatologist. At age 40, the mother of five finally got her diagnosis—but not much else. That first rheumatologist, she says, wasn’t up to date. She actually had to ask around for recommendations and then switch health insurance companies to be able to visit a doctor that sounded right for her.

During her first visit, Kelly was delighted to learn the doctor had recently attended the American College of Rheumatology (ACR) conference and knew about the latest treatments, including biologics, drugs based on compounds made by living cells. “She explained how the biologics worked,” says Kelly. “And told me I should give them a try.”

Kelly’s new medication regimen helped her regain some of her mobility, and in 2009, at age 45, Kelly founded her own website, RAWarrior.com, to help educate and empower people with RA. “It’s so important to be involved in your care,” says Kelly.

Here are 4 key things Kelly learned on her RA journey that may help you:

Find out what your doctor is writing about you  
Ask for a copy of your doctor’s notes, and get copies of your lab reports. “Often, what’s written in the chart doesn’t match what the patient is actually saying to the doctor,” says Kelly. When she read her first rheumatologist’s notes, she found no mention of her loss of functionality. Another set of notes incorrectly stated that she’d denied having morning stiffness, although she did. And still another misstated key medical test results. “See if you agree with how the doctor is interpreting what you say,” she urges. Of course, making copies of charts can be time-consuming, so your healthcare provider’s staff may charge you for this service. Minimize time and costs by asking for a copy of the notes every six months (versus asking for your entire chart to be copied every few years).

Make sure you have a top-notch primary care physician (PCP)
Ask your rheumatologist to recommend a strong primary care physician (PCP) to round out your health care. You probably see your rheumatologist only a few times a year, and he or she is focusing mainly on your joints. You need another healthcare professional who can help manage any other conditions you may have. A good PCP can also help you deal with secondary aspects of your RA, such as vision and stomach problems, heart-disease risk factors and medication side effects. “I finally found a great internist,” says Kelly. “He actually has done research on RA, and wants to work with me on my other health issues.” 

Hit the right websites to stay current on RA—easily
There is a flood of new research on RA, and keeping on top of it can be daunting. That’s one of the reasons Kelly started her site—to make it easier for RA patients to stay in the loop. Kelly goes to the ACR conferences herself, and spends about 60 hours a week keeping the site up to date. Don’t assume your rheumatologist knows everything. “If you find something really important on a blog, go find the actual study and print out the part that you think applies to your care,” Kelly suggests. “Highlight it, and send or drop it off at your doctor’s office. Ask the staff to put it in your chart so it will be handy at your next appointment and you can discuss the issue face to face.”

Monitor your meds’ effectiveness.
If you have been taking a new medication for six months, and aren’t seeing any improvement, it’s time to try something else. To track your progress, keep a log indicating how you feel on a daily or weekly basis. Is your functionality getting better, worse, or staying the same? You should start to see some improvement shortly after you start a new med, but if there’s no real change by six months—or you’re feeling worse, you may need to change your medication,  or the dosage, or switch to a different combination of meds.  Kelly also advises monitoring your temperature, since many people with RA have low-grade fevers. “Take your temperature every day,” she says. “If a low-grade fever persists, your med may not be working the way it should.” 

April 2013