Navigating a New Diagnosis of Rheumatoid Arthritis

My pathway to RA diagnosis was unfortunately all too common in our community. I struggled with joint pain from the time I was young. I remember the pediatrician recommending Motrin and ice to my parents as I clutched my knees and cried.

Experiencing RA pain symptoms

I experienced symptoms early on. I was told that it was growing pains, that it was stress, that my involvement as a figure skater was causing me additional troubles. We noted an increasingly high sed rate indicating inflammation in my body, but we never delved deeper into this challenge. The doctor never brought up anything serious, so why should we think more of it?

In 2009, at 23 years old, I began struggling with some significant GI distress, which quickly led to other physical challenges including new joint swelling and worsening joint pain that were earmarked as fibromyalgia for a long time. Six years later after being diagnosed with Crohn’s disease, I saw a rheumatologist for the first time. She looked at my symptoms, my labs, and my records, and asked me if I’d ever heard of rheumatoid arthritis.

What I learned about rheumatoid arthritis

As someone who was educated, medically literate and research-oriented, I had heard of the disease, but never assumed I’d had it.

Here’s what I learned at that appointment:

1. There is no one test to diagnose RA. There is a combination of blood tests (ESR, CRP, anti-CCP, and RF) as well as a physical exam (including checking for swelling, redness, warmth, reflexes, and muscle strength) and imaging tests (X-rays, MRIs, and ultrasounds) to judge the severity and progression of your disease.

2. RA is an autoimmune disease. Once you’ve been diagnosed with any autoimmune disease (in my case, Crohn’s disease) the likelihood increases of being diagnosed with additional autoimmune diseases. The reason behind this is somewhat easy to understand - in an autoimmune disease, the immune system doesn’t work properly and attacks itself. For something like Crohn’s disease, this occurs in the digestive system, and for something like RA, this occurs in the linings of the joints. This mechanism is very similar, although attacking different places, which is why it can be more likely to have multiple autoimmune diseases than just one.

3. Based only on the information my doctor already had, she was nearly positive that I had been struggling with RA for a long time.

Getting an accurate diagnosis was the first step to discovering a treatment plan to help with my RA symptoms - joint pain and swelling, stiffness, severe fatigue, and low-grade fevers, which increased with changes in the weather.

Finding optimal treatment

My Crohn’s disease at the time was being treated with a gut-specific biologic, which unfortunately would not help at all with my RA.

This was when I learned that insurance only covers one biologic at a time.

I could not maintain my Crohn’s disease medication while adding a biologic medication for RA. So, this meant that I needed to switch to a biologic medication that could do both.

Unfortunately, between insurance and logistics and medication reactions, it took me six months from the time of RA diagnosis to the time when I began to find symptom relief from medication. The first time I got out of bed in the morning without stiffness or pain, I cried from relief.

Navigating a new RA diagnosis

I know that navigating life with RA may be extremely different for you if you don’t have other health challenges, or if you’re a different age, or have different resources. That’s why I want to share these tips to help support you!

1. Utilize RheumatoidArthritis.net! From “What is RA” to “Treatment Options” and stories from our community members and advocates, this is a great space to learn about RA and to use our forums and social media platforms to connect with other patients and ask questions to those who have been there before!

2. Resources like the Arthritis Foundation and American College of Rheumatology have more in depth information on the disease, symptoms, medication options, and living with RA.

3. Ask your doctor about your treatment options! There are several different classes of medication used to treat RA, and they’re not all made equally! In addition, there are medications to take regularly, and then as-needed or flare related medications - make sure to talk to your doctor about what options are best for your specific disease case.

4. Take new information in stride. Being diagnosed with RA is already really overwhelming. As you read and learn new things, make sure to take notes, write down questions, take breaks, and give yourself the mental and emotional time to process everything.

If you have other tips to share with newly diagnosed RA patients, please list them below! We’d love to hear from you!