In Her Own Words: Living With Rheumatoid Arthritis

Lisa, a 35-year-old dietitian from Ohio, was diagnosed with rheumatoid arthritis (RA) eight years ago. She has found support and information through the Arthritis Foundation and is now teaching a self-help class for the foundation.

What was your first sign that something was wrong? What symptoms did you experience?

I would wake up in the morning and my feet would really hurt. It would hurt just to walk across the floor. And then I started noticing other symptoms—my hands started to hurt and I couldn’t snap my fingers. I would get pain off and on in different joints in my body.

What was the diagnosis experience like?

I had just joined a gym and was going pretty frequently, so I just thought that I overdid it at the gym. But after having pain for about two or three months, I went to my primary care doctor. I really didn’t want to, because I didn’t want to know that I had something. My doctor examined me and took some blood and did a test for something called rheumatoid factor, which came back negative. She also thought it might be overexertion from exercise and she gave me some high-dose ibuprofen. But after two weeks I was still in a lot of pain, so I went back and she took more blood and we found out that it was RA. She referred me to a rheumatologist, under whose care I manage my condition.

What was your initial and then longer-term reaction to the diagnosis?

I was upset but I was also a little relieved, because at least I knew that there was a reason for the pain I was feeling. But at the same time I didn’t know anything about it, so I was also afraid. Some days I am angry, because I'm sick of being stiff and sore and I hate taking drugs to control pain. But I try to take advantage of when I’m feeling well (I’ll exercise more, do more around the house), because I never know when I'll have a flare and I'll be useless.

How do you manage your disease?

I was started on a series of drugs, some of which are called DMARDs (disease-modifying anti-rheumatic drugs). These are supposed to halt the disease from progressing any further, to prevent you from getting twisted joints and disfigured hands. I was started on methotrexate and oral gold, but I ended up having a bad photosensitive reaction to the gold (I was out in the sun and everything I looked at turned silver and I got bad hives and ended up having to go to the ER). There are also drugs to treat the pain caused by RA, including NSAIDs (nonsteroidal anti-inflammatory drugs), COX-2 inhibitors, and prednisone, which is a steroid.

Since I’ve been diagnosed, my regimen has changed a couple different times for different reasons. After I had the reaction to the gold, I went on sulfasalazine and Plaquenil. I was on those for a while and then I had a reaction to the sulfasalazine. Then I went on a drug called Enbrel, which is one of a newer class of drugs called biologic agents. For the past 8-10 months I was giving myself injections of Enbrel twice a week and that was like a wonder drug—I felt really good on that drug. But now that my husband and I are trying to get pregnant, I’m only on prednisone, because Enbrel is contraindicated for pregnancy.