Benefits of Tracking Your RA Disease Progression

When it comes to managing rheumatoid arthritis (RA), things can change pretty quickly—one day, you feel fine, and the next, you struggle with severe pain and fatigue. Tracking pain, fatigue, other RA symptoms, medications, and disease triggers can help reduce flare-ups (periods of severe symptoms) and manage your disease's various aspects.  

Rheumatoid arthritis is a type of inflammatory arthritis that causes joint pain, swelling, and stiffness. It is also an autoimmune disease, which means the immune system, which generally protects you, malfunctions and starts to attack healthy tissues.

With RA, those attacks are focused on the linings of the joints called the synovium. However, it can affect any organ or part of the body.

In the United States, more than 1.36 million people are living with RA. While it is commonly diagnosed in middle age, it can affect anyone, including children.  

RA is a progressive condition that will worsen over time. Early diagnosis and aggressive treatment are crucial for avoiding joint damage and disease complications, such as cardiovascular disease and life-threatening infections. Untreated RA can also lead to severe joint damage, disability, and organ damage. It can destroy your quality of life and quickly become life-threatening.

This article will cover stages of RA progression, ways to track disease activity, smart device trackers, signs of disease progression, and more.

Stages of RA

There are four stages of RA disease progression. Each of these is unique in the symptoms it causes, how it presents, and the effects on the body.

Stage 1: Mild Disease  

At this early, mild stage of RA, you may experience joint stiffness in the morning upon waking up and after long periods of inactivity. Stiffness usually resolves with movement. You may also experience pain in the small joints of your hands and feet because the synovium of these joints is inflamed.  

X-rays at this early stage will appear normal. However, more sensitive imaging like ultrasound, magnetic resonance imaging (MRI), and computed tomography (CT) scanning can show fluid and inflammation in affected joints and early bone or joint erosion.  

Stage 2: Moderate Disease  

In this stage, RA is in a moderate stage, where synovial inflammation has started to damage joint cartilage. This damage means you will experience pain, limited range of motion, and loss of mobility.  

RA may also cause inflammation of the lungs, skin, eyes, and heart in stage 2. You may also experience rheumatoid nodules—firm lumps that appear under the skin, usually at the elbows.  

Because some people will have blood work that is negative for antibodies or rheumatoid factor, imaging can help diagnose RA in stage 2. X-rays, ultrasound scans, and MRIs can show signs of inflammation and the start of joint and cartilage damage.  

Stage 3  

By stage 3, RA has become severe, and damage has greatly affected the joints. Cartilage has worn away, causing the bone to rub together, which can be extremely painful. You might also experience muscle weakness, mobility problems, disability, and damaged bone.  

Joints may appear bent or crooked, especially the fingers. This type of damage from RA is rare these days due to more advanced treatment options, including biologic drug therapies.  

Stage 4  

By stage 4, the joints no longer work, and there is severe pain, stiffness, and swelling. People in stage 4 may experience significant mobility restrictions and disability. Ankylosis, which is abnormal stiffening and immobility of a joint due to fusion of the bones, can occur.

It takes many years or even decades for people with RA to experience stage 4 progression. But most people never make it to stage 4 because their disease is either well-managed or has gone into remission.   

How to Track Disease Activity  

Partnering with your rheumatologist (a specialist in diseases of the bones, muscles, and joints) is key to managing RA. That starts by taking an active role in tracking daily habits and sharing that information with your rheumatologist. Here are some ways to get started.  

Apps and Symptom Log  

The easiest way to see patterns in RA symptoms is to track them regularly. You will want to track symptoms and triggers as you go about your day. Make a note of when you are taking your RA treatments if you see symptom improvement and what types of activities make you feel better or worse.

For example, are you stiff for longer than 30 minutes upon waking or easily fatigued after doing a household chore? Do specific foods cause you to experience worsening symptoms, and what foods help you feel better?

Smart device apps are usually the easiest way to track symptoms, medicines, diet, and activity. However, you can always track your RA using a notepad. Choose whatever method is best for you.

Medication Effectiveness

When your rheumatologist sees you, they will want to know how well your treatment is working. Medication adherence is vital in RA. Research shows that low treatment adherence is linked to adverse RA outcomes, including a more active disease and joint damage.

You will want to track the medications you take to manage RA—both prescription and over-the-counter (OTC) drugs. Note the times you take them, the dosage, and if you miss doses. If you notice side effects, or if treatment is not helping, make a note to bring this up at your next rheumatology visit.  

Questionnaires  

If your rheumatologist provides you with questionnaires about how RA affects you, take the time to answer them. The answers to those questions will help your doctor provide the best care for you.

Questionnaires cover various topics to help your doctor better understand how RA affects you. They might cover:

• How frequently joint pain affects you
• If you experience morning stiffness
• The frequency and severity of general symptoms, such as fatigue, fever, and appetite loss
• Skin symptoms
• Circulation problems
• Heart, lung, or breathing issues
• Gastrointestinal troubles
• Recent infection history
• Emotional health, including severity and frequency of depressive symptoms, anxiety, and any coping struggles
• Sleep troubles related to RA pain or other symptoms

Testing

Your rheumatologist will use different tools to track RA disease progression, inflammation, disease activity, and joint damage. These studies can show your doctor if treatments are working or if RA has worsened.  

Blood work: People with RA often have high erythrocyte sedimentation (also referred to as ESR or sed rate) or C-reactive protein (CRP) levels. Testing for CRP or ESR lets you know how much inflammation there is in your body at the test time.

A blood test called the Vectra DA allows healthcare providers to test for biomarkers of RA activity. Biomarkers are things that can be measured. 

DAS28: The disease activity score with 28 joint counts combines a score of tender and swollen, a physical examination, blood work, and patient questionnaires to allow your rheumatologist a numerical method for measuring disease activity.

Imaging: Your rheumatologist may routinely request imaging to track the progression of RA in your joints over time. MRI and ultrasound scans can help determine disease severity, especially when blood work isn't specific enough.

Flare-Ups  

RA is known for causing periods of flare-up and remission (little or no disease activity). Remission can be possible if you take medications as prescribed and avoid triggers that make RA worse.

Certain habits, like overconsumption of alcohol, smoking cigarettes, and getting poor sleep, can easily exacerbate RA. But these aren't the only triggers of flare-ups, and most people with the condition have unique triggers that can lead to flares.

Disease flares in RA lead to joint damage, disease progression, and disability. Research suggests that intensifying treatment during flare-ups outweighs the risks of overtreatment.

By tracking your RA flares, you can share the frequency and severity of flares and the effect on your quality of life. Your healthcare provider can tweak your treatment plan or offer medication during a flare-up, such as a corticosteroid, to reduce inflammation and the time it takes to recover.                 

Free and Paid RA Trackers  

Your smart device (mobile device or tablet) can help you to track RA symptoms, disease flares, medication, sleep, and more. Not all apps are the same—some might be useful for monitoring RA disease aspects, while others teach you about diet and activity to manage RA better.

According to a 2019 analysis of RA apps, no single app will give you everything you need to manage RA. Researchers concluded that while these tools are helpful, they do not offer a comprehensive experience for people with RA. Areas for improvement included adding accessibility features and protecting health information.

Even though tracking apps have shortfalls, many can still help track RA. Explore the different apps available to determine what works best for you.

Here are some apps that might help you:  

• myVectra: This free app is available from iTunes or Google Play and helps track symptoms, side effects, and medication schedules.
• PainScale: This app is a free chronic pain tracker diary, available through iTunes or Google Play. It offers a personalized pain management tool for understanding and managing RA and allows you to track symptoms based on RA and other chronic pain conditions. App tools include a pain diary, pain reports, tips, and reminders. 
• My Pain Diary: This paid app ($4.99) is available in the iTunes store. It can help track joint pain by inputting data shown in a graph. It might help visualize and make sense of the changes in symptoms over time. This information might be helpful to your healthcare provider as they manage your treatment plan. Additional features include a weather tracker to help correlate symptoms with weather changes so you can figure out the best ways to manage this trigger. 
• TRACK + REACT: From the Arthritis Foundation, this tool was specially designed for people with arthritis. It can track pain, symptoms, exercise, stress levels, sleep habits, etc. It is available through iTunes or Google Play. 
• Cliexa-RA: This is a graph app for mapping pain and tracking treatments. It can give you an accurate and complete tool for sharing with your rheumatologist at your next visit. Cliexa-RA is available through iTunes or Google Play. 
• ArthritisPower: Created by the Global Healthy Living Foundation through their Creaky Joints initiative, this app is available through iTunes and Google Play. It allows you to track symptoms and medications and fill out surveys to share information anonymously with researchers who use that information in research initiatives toward improved RA treatment and patient outcomes.

Signs RA Isn't Improving

RA is an unpredictable disease, but it is possible to get ahead of problems by paying attention to the signs and symptoms of disease progression.  

Signs that your RA is not improving are:  

• More frequent, severe flares
• New pain and joint swelling
• Activities of daily living (getting dressed, carrying for yourself, or household chores) become harder to complete
• You are moving less because of increased pain and stiffness
• Severe fatigue that affects you daily
• Rheumatoid nodules 
• Blood work that shows active inflammation
• Joint damage evident in imaging studies
• Nerve problems such as nerve pain, numbness, or tingling in the hands and feet
• Noticeable differences in joint mobility and muscle strength

If you find living with RA is getting harder and treatments do not appear to be helping, reach out to our rheumatologist. Changes to your treatment plan can improve symptoms and your quality of life.  

Can You Do Anything to Slow Progression?

The key to living your best life with RA is being an advocate for your health. By being an active participant, you impact how and if the disease progresses. 

Ways to slow down disease progression and manage symptoms include:  

• Tracking triggers: Stressors, foods, and some activities can trigger flares, and by tracking these and managing them, you may be able to reduce the numbers of flares you experience with RA.
• Finding the right healthcare provider: RA is a lifelong condition, so it is crucial to find someone you trust and can be open with to manage your care.
• Speak up: If you believe medication isn't helpful, talk to your healthcare provider about other medicines that might help. Or, if you notice something that seems off with your RA medicines or symptoms, don't put off telling your healthcare provider.
• Customize your treatment plan: RA Is a unique condition that no two people experience the same. Work with your healthcare provider to find a treatment plan that fits your health situation and lifestyle. 
• Keep moving: Being active can be challenging with RA, but it is essential to keep your joints and muscles mobile and functional so avoid disability. You might also consider enlisting the help of a physical therapist, especially if exercise has become a struggle.
• Eat a healthy diet: Make sure you eat a healthy, balanced diet to manage symptoms and improve the way you feel overall. Eat plenty of fruits and vegetables and whole grains, and choose lean proteins and low-fat dairy options.
• Cut yourself some slack: You didn't cause RA to happen, and you are doing your best to manage its effects. Do your best to cope with the condition's impact and enlist the help of loved ones or a mental health professional when you find yourself struggling.

Summary

Rheumatoid arthritis is an autoimmune disease in which the immune system malfunctions and attacks healthy tissues, mainly the linings of the joints. The main symptoms are joint pain, swelling, and stiffness.

There is no cure for RA, and the disease will worsen over time. Untreated RA can lead to severe joint damage, disability, life-threatening complications, and a lower quality of life.  

Tracking pain, fatigue, and other RA symptoms can help your healthcare provider better manage the disease and create a treatment plan that reduces adverse disease effects. To help yourself and your doctor, take the time to note things like triggers, symptoms, medications, and disease effects.

The easiest way to track RA is with smart device apps, but you can also track the disease using a notepad as a journal.

A Word From Verywell

RA is a long-term illness, and there are times when RA can be stressful. Some people may even experience serious mental health problems, including anxiety and depression.  

Support from family and friends can help you to better cope and deal with the various aspects of the disease. You may also benefit from joining a support group for people with RA. Your rheumatologist might be able to help you locate an in-person support group near you or online.

Staying on top of your treatment plan can also help you cope better. If you find that you are struggling to cope or think you might be depressed or living with anxiety, let your healthcare provider know. They can offer treatment options or refer you to a therapist.