Stacy Courtnay’s symptoms couldn’t be relieved for many years. Now as she has her disease under control as a patient representative, she brings perspective on researchers who had unsuccessful RA treatments in search of a cure.
When Stacy Courtnay was diagnosed with rheumatoid arthritis (RA), she couldn’t imagine herself speaking with people who had the same disease. “The moment I found out I had it,’’ she says, "my mom voluntarily did work with the Arthritis Foundation, but I didn’t want to participate because I couldn’t envision myself speaking with miserable people like me.
Courtnay now participates in a program created by the Arthritis Foundation and the American College of Rheumatology (ACR), and apart from speaking with people with the same disease as her, she also gives her opinion to doctors in order for them to better understand what does it mean to live with the disease.
Educating doctors and researchers on real-life experience of RA
“I attended the ACR conference with the Arthritis Foundation recently,’’ says Courtnay and describes her role in the ACR Arthritis Foundation Patient Representative Program. “Patients are part of the conference for the very first year,’’ she says, and notes that patients deservedly are part of the conference.
“In previous years researchers were demonstrating an auto-injector,’’ said Sue Schrandt of the Arthritis Foundation to Courtnay.’’ You pinch your stomach fat when taking drugs like Humira (adalimumab), after that you put the auto-injector on it, and it shoots the needle very fast. For people like me, the auto-injector was working wonders, because it was really hard to draw out the serum and put the needle in my stomach and push the syringe.
"Some people couldn’t even use it because their hands were swollen and in pain,’’ was something researchers didn’t think of. Some patients were unable to pinch the fat on their stomach in order to use the auto-injector. “It didn’t cross our mind,’’ said the researchers. "Well, of course, it didn’t cross their mind, because their hands are not swollen and in pain. That’s a reason why patients should be engaged in the process.’’
Symptoms of RA were there before the diagnosis
Courtnay is now 39 but she started to feel the effects of rheumatoid arthritis when she was 23. "After college graduation, I started working at a software company, and I was working a lot of trade shows. My feet started to hurt because I was standing on them most of the time. At that time I thought that wearing high heels were responsible for that so I switched to more comfortable shoes, but still, the pain didn’t go away. I even visited a podiatrist but he didn’t diagnose me.’’
"Six months have passed and I flew on the other side of the ocean to Atlanta, and when I finally got home, I couldn’t lift my arms. At first, I thought it was because of the 12 hours airplane flight. You always put the blame on some things in order not to face the truth.’’
Symptoms such as: Not able to lift arms, swollen wrists and foot pain didn’t go away
When both of Courtnay’s wrists became swollen and she couldn’t move them, she realized that something more serious is happening. Doctors referred her to a rheumatologist because of the symmetry of the swelling. “RA is very symmetrical,’’ Courtnay said. “Both of your wrists will be in pain simultaneously. That explained the pain she had in her feet and also made her ponder about the pain in her shoulders. “When I was 25, I was diagnosed for the first time with RA, it was two years after I felt the pain.’’
Commuting to work felt like my feet were killing me
It was extremely hard for Courtnay to go to work. “I remember my feet were killing me every morning I was getting prepared for work,’’ she says, “I couldn’t wait to take my shoes off as soon as I got to my desk. The pain was so extreme, it felt as if someone was hammering my feet, they were bruised and damaged."
Getting a treatment and getting ready to form a family
Courtnay was recently married and worried about whether the medication she takes will affect her pregnancy. “At that time biologics were not popular and were new,’’ she says. “They prescribed prednisone for my swollen feet. After that, they put me on the standard medications. I was taking prednisone for about four years. The symptoms faded away, I didn’t gain weight, and it worked pretty well.’’
“It is believed that your RA goes into remission when you get pregnant,’’ she says. I stopped using prednisone and got pregnant. "I planned on not using prednisone the entire time, but the pain was unbearable, and I even wasn’t able to walk.’’ My doctor said, "your body didn’t understand that you should go into remission,’’ she says, laughing.
Being pregnant, being a parent, and more painful symptoms
Courtnay joined a pregnancy study in California because she wanted to know more about how prednisone will affect her and her baby. Researchers followed her during her pregnancy and monitored her son John during an entire year to see if potential side effects will occur.
"We didn’t have any side effects at all,’’ said Courtnay. “But I started the journey with biologics after I gave birth to John in 2007. At first, I took Enbrel (etanercept), which wasn’t working. After that, I started taking Humira, which didn’t work as well. So I switched to Remicade (infliximab). At this point, I was suffering from the disease for over five years and it was a great disadvantage that I hadn’t started treating it from the beginning. The pain was just masked because I wanted to have children.
Her life with a newborn baby and dealing with new symptoms
It was a struggle to live a normal life as a new mom. “After I gave birth things got worse,’’ she said. “Even simple things such as opening a milk carton, picking up a coffee cup or squeezing a shampoo bottle were difficult for me. I couldn’t even go to the bathroom without the help of my husband, and my parents had to come over in order to take care of my son. I wasn’t even able to hold my six months old son in my arms. When he was two, I remember him accidentally hitting my wrist. I couldn’t stand the pain so I was on my knees crying. He was also upset because he didn’t understand what was going on,’’ she recalls.
RA symptoms make it difficult to take care of a baby
“I couldn’t do recreational activities with him,’’ she says. “It was so difficult for me, because I was struggling with postpartum depression. It must have been really hard for my parents and my husband. I had no patience with anyone. When you experience pain…,’’ Her voice cracked as she remembers.
A decision to stop the traditional RA treatment
Courtnay was really frustrated that her medicine didn’t help her, and she was desperate for relief, so she made a drastic decision. “I threw off my medications and tried to get natural treatment,’’ she says. “All this natural stuff led me to a point where I couldn’t walk and was constantly laying in bed. You can’t get your infusion when you are sick and on Remicade. So for three months, when I was calling my rheumatologist I was telling him that I was sick, so I didn’t have to take the medication. I didn’t want him to know the truth.’’
Trying Everything: From Extreme diets to Chelation Therapy and Detox concoctions
In order to get relief from her RA, Courtnay was willing to try anything. She was open to all kinds of treatments. “I even started to eat healthily,’’ she says. “I tried the sugar-free diet, the eating for your blood type diet, the raw diet. I even went to a clinic in Carrollton, Georgia where I was getting mineral IVs. I also started the chelation therapy which supposedly cleans your blood of heavy metals.’’
“Those things are not crazy at all,’’ she says, "I tried crazier things such as drinking food-grade peroxide. I had to wear gloves because if I touched it, my hands would get burned! But I had to drink it! An entire book is written about how it would cure you of immune disease,’’ she explains. "I even tried oil pulling which basically means swirling sesame oil in your mouth 10 times a day. It worked by drawing out the toxins and curing you. I tried everything that I read about because my biologics weren’t working. I spent a lot of money on witch portions.’’
No pain relief, and no more natural treatment options
Courtnay felt as if she had run out options. “Certain people say that if you heal your gut, you will heal your immune system, because they believe it begins in your gut. “I started an entire protocol for that, and it didn’t include the massage, acupuncture and the chiropractors. I spent a lot of money because nothing else seemed to be working.
“I’ll never forget how one Saturday I called my rheumatologist, and told him about the things I’ve done with tears in my eyes. He doesn’t stop giving me a hard time about it. I only tried the peroxide diet because I read it already helped another person, so I thought to myself, “I tried everything so why shouldn’t I try it.’’ Her rheumatologist put her on prednisone again, and after that, he prescribed Actemra (tocilizumab), a treatment which was successful for her for about five years.
A chance to help other people while using her experience with failed treatments
Courtnay is such a valuable patient-expert for doctors and researchers through the patient representative program, because of her unique experience dealing with RA. She can share her painful firsthand RA experience. And she can also speak about the guilt that other people give you for having the disease.
Confronting emotions, managing unbearable pain, and guilt trips
“People think that it’s something you are in control of,’’ Courtnay says. “All the naturopaths or holistic doctors make you feel as if it’s something you’ve done or not done and you can change it. So I was prepared to do anything they would tell me, but it still wouldn’t work. My rheumatologist said I shouldn’t think that it was something I was doing, because if it was we could cure it.’’
Getting validation from other people living with RA and study results
“Sometimes when I say I need a nap, even my family who have been very supportive towards me and my disease, think I’m exaggerating,’’ she says. “I’m glad to have attended this ACR conference because I heard about a study that says people with RA need more sleep in order to function, I felt validation. It is also very validating to hear other people’s similar experience with RA.
Working on projects in order to help people with RA
Courtnay is currently working on a pilot project with the Arthritis Foundation and a lot of universities that allows people with RA to collect information from registries around the country in order to be more prepared when they combat the disease.
“I want to know the side effects of the medications as a patient. What information do we have about people who take biologics for longer periods of time? Patients need to know all these things and even more. I’ve met people who work for the Arthritis Foundation who have RA. It’s amazing to meet people who are on a life mission to find a cure for their disease.
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