Now, as part of a new pilot program created by the Arthritis Foundation and the American College of Rheumatology (ACR), Courtnay does much more than speak to other people living with RA. As a patient advocate, she speaks to doctors and researchers and helps them develop a better idea of what it is like to live with the disease.
Schooling Doctors and Researchers on the Real Life Experience of RA
“Recently, I attended the ACR conference with the Arthritis Foundation,” Courtnay says, describing her role in the ACR Arthritis Foundation Patient Representative Program. “It’s the first year they have ever had patients be part of the conference," she says, noting that there had long been a need for patient input. “Sue Schrandt of the Arthritis Foundation told me a story about a previous year when researchers were demonstrating an auto-injector. When you take a drug like Humira [adalimumab], you pinch your stomach fat, put the auto-injector on it, and the auto-injector shoots the needle in really fast. The auto-injector was amazing for people like me, because it was hard to draw out the serum and put the needle in my stomach and push the syringe. “What the researchers didn’t think about was someone having two hands that were so swollen and in so much pain having to use it. Some people can’t even pinch the fat on their stomach to use the auto-injector. The researchers said, ‘We didn’t even think about that.’ Of course they didn’t. They have two hands that work. That’s why they needed to start engaging patients in the process.”
RA Symptoms Arrived Years Before the Diagnosis
Now 39, Courtnay started feeling the effects of rheumatoid arthritis at age 23. “When I graduated college, I started a job at a software company, and I was working a lot of trade shows. I was on my feet a lot, and my feet started to hurt. I just attributed it to being in heels that were too high. One day, I decided, I don’t care about wearing cute shoes, I’m going to get my comfortable shoes. I wore flats, and my feet still didn’t get better. I went to a podiatrist, and I didn’t get any kind of diagnosis. “Six months later,” she recalls, “I flew overseas. When I got home to Atlanta, I couldn’t lift my arms. I attributed that to being on an airplane for 12 hours. You’re always trying to justify things. You tell yourself, Well, it was because of this or that.”
Symptoms Persist: Swollen Wrists, Arms She Couldn’t Lift, Relentless Foot Pain
Courtnay soon realized something else was happening when both her wrists became incredibly swollen and immobile. Because of the symmetry of the swelling, doctors referred her to a rheumatologist. “RA is very symmetrical,” she says. “If your left wrist hurts, your right wrist hurts too. So that also explained the pain in my feet, and made me think about the pain in my shoulders. I got the official RA diagnosis when I was 25— two years after I started feeling the pain.” RELATED: Misdiagnosis of Rheumatoid Arthritis Is Common
Commuting to Work Felt Like “Someone Had Taken a Hammer to My Feet”
For Courtnay, just getting to work was an ordeal. “I remember every morning getting dressed to go to work and my feet would just kill me,” she says. “I’d get on the elevator to get to my desk and I could not wait to take my shoes off. I always say it was as if someone had taken a hammer to my feet. They just felt bruised and battered.”
Getting Treated and Getting Ready to Start a Family
Recently married at the time, Courtnay began to wonder what effects the medication she needed to take would have on a potential pregnancy. “At that time, biologics were fairly new and not very popular,” she says. “They put me on prednisone to get the swelling down. Then they put me on a few first-line medications. I basically lived on prednisone for four years. It masked my symptoms. I didn’t really gain weight; it worked well.” RELATED: Family Planning When You Have Rheumatoid Arthritis “There’s a theory that when you get pregnant, your RA goes into remission,” she explains. “I went off prednisone and got pregnant. I was going to try to stay off prednisone the entire time, but I could not even walk. So much for that theory! My doctor said, ’Your body didn’t get the memo that you were supposed to go into remission,’” she says, laughing. RELATED: Your Rheumatoid Arthritis Plan: Strive for Remission, Sidestep Relapse
Pregnancy, Parenthood, and More Painful Symptoms
Wanting to know more about how the prednisone might affect her and her baby, Courtnay joined a pregnancy study in California. Researchers followed her throughout her pregnancy and monitored her son, John, for his first year to look for potential side effects. “He had no side effects and neither did I,” Courtnay says. ”But after I delivered John in 2007, things got really bad. That’s when I started the journey with biologics. I started with Enbrel (etanercept). That didn’t work. Humira didn’t work for me either. I switched to Remicade (infliximab). At this point, I’d had the disease for a little over five years. And I was really behind the eight ball, because I didn’t treat it from the beginning. I just masked the pain because I wanted to have kids.”
Life With a Newborn Baby, and New Symptoms
As a new mom, desperate to live a normal life, Courtnay began to find the struggle daunting. “It was so bad after I gave birth,” Courtnay says. “It’s hard enough that simple things become difficult — picking up a coffee cup, opening a milk carton, squeezing a shampoo bottle. My husband had to carry me to the bathroom. My parents practically moved in with us to help take care of my son. Here I was, a new mom, and my son was six months old, and I couldn’t even pick him up. I remember when my son was two, he accidentally hit my wrist. I went to my knees, sobbing in pain, and of course he didn’t understand what was going on, so he was upset too,” she recalls.
The Struggles of Caring for a Baby While Enduring RA Symptoms
“I wasn’t able to do a lot of recreational activities with him,” she says. “It was so hard. I struggled with postpartum depression. I’m not sure if it was all due to that. I think back to how difficult it was for my husband, my parents. I lost my patience with everyone. When you are in pain…,” Courtnay’s voice trails off as she remembers.
A Dramatic Decision to Avoid Traditional RA Treatment
Desperate for relief and frustrated by her unhelpful medications, Courtnay took a drastic step. “I ditched all the medications and tried to go the natural route,” she says. “I did all this crazy natural stuff, which really got me in trouble to the point where I was bedridden and couldn’t walk. When you are on Remicade, if you’re sick, you can’t get your infusion. So for three months, I just kept calling my rheumatologist and telling him that I was sick so that I wouldn’t have to take the medication. I didn’t want to tell him the truth.” RELATED: 7 Common Rheumatoid Arthritis Medication Mistakes
Trying Anything and Everything: Chelation Therapy, Extreme Diets, Detox Concoctions
Courtnay was willing to try anything, literally, to find relief from her RA. No treatment was too obscure or unlikely. “I started off trying to eat healthy,” she says. “I did the no-sugar diet, the raw diet, the eating-for-your-blood-type diet. I went to a clinic in Carrollton, Georgia, and they were giving me mineral IVs. I started doing chelation therapy, which is supposed to clean your blood of heavy metals.” “Those things aren’t too crazy,” she says, “but I did a peroxide cure, where you would drink food-grade peroxide. You weren’t supposed to touch it because it would burn your hands! You had to wear gloves. But you would drink it! There’s a whole book on how it would cure you of immune disease,” she explains. “I even tried something called oil pulling, where you buy a certain kind of sesame oil and swirl it in your mouth 10 times a day. It was supposed to draw out the toxins and cure you. Anything and everything I read about, I would try, because my biologics weren’t working. I spent thousands of dollars on what I called witch potions.” RELATED: Watch Out for These Rheumatoid Arthritis Alternative Therapies
No Relief, and No More Alternative Treatment Options
Courtnay eventually began to run out of options. “There are people who say this whole thing starts in your gut — that if you heal your gut, you can heal your immune system,” she says. “So I started a protocol for that. That doesn’t even include the chiropractors, the acupuncture, massage. I spent thousands of dollars because nothing else was working. “I’ll never forget that Saturday, calling my rheumatologist in tears and telling him what I had done. He still gives me a hard time about it today. But let’s say you read that someone was cured from the peroxide diet. You say to yourself, ‘Wow, I’ve tried everything else, why not that?’ I did buy into that stuff, because I was in so much pain, I was willing to try anything.” Courtnay’s rheumatologist put her back on prednisone, and then prescribed Actemra (tocilizumab), a treatment she’s been using, with success, for five years.
An Opportunity to Use Her Experience With Failed Treatments to Help Others
Courtnay’s unique experience dealing with RA is part of what has made her such a valuable patient-expert for researchers and doctors through the patient representative program. She can speak firsthand to the hopelessness a person with RA experiences when the pain becomes too severe. And the guilt that others can make you feel about your disease.
The Emotional Reality: Dealing With Severe Pain, Guilt Trips
“People always make you feel like its something that you are doing,” Courtnay says. “When you meet with these holistic doctors and naturopaths, it does feel like it’s something you’ve done or not done and that you can change it. So I was like great, tell me what to do and I’ll do it. And I still wouldn’t get better. My rheumatologist said, please don’t buy into this, if it was something you were doing, we would be able to cure it.”
Gaining Validation From Study Results and Others Living With RA
“Even my family, who have been so supportive, sometimes feel like I may exaggerate when I say I need a nap,” she explains. “So to be at the ACR conference and to hear about a study that says people with RA need more sleep to function, it was very validating. And it’s validating to hear the stories of other people who are going through similar experiences.”
Working to Help Other People Living With Rheumatoid Arthritis
Courtnay is now working on a pilot project with the Arthritis Foundation and multiple universities that would create a patient dashboard that would allow a person with arthritis to collect data from registries around the country to provide themselves with as much information as possible to develop a plan to combat the disease. RELATED: Rheumatoid Arthritis Clinical Trials: What to Know “As a patient, I want to know what the side effects are for medications. What data do we have about people taking biologics for long periods of time? There’s just so much more as patients that we need to know. I’ve met so many people working with the Arthritis Foundation that have RA themselves. It’s amazing to see these people who’ve made finding a cure a mission in their lives.”
