Inconsistent Symptoms in Juvenile Rheumatoid Arthritis

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Hello Doctor, I was diagnosed with juvenile rheumatoid arthritis about three years ago when I was around 14 years old.
It started with pain in my left knee, and then more joints began to hurt.
Now, I experience pain in my fingers, left shoulder, ankles, both knees, and elbows.
The joints are swollen and painful to the touch, but strangely, there is no redness or warmth.
Moreover, when the pain is most noticeable, my inflammatory markers are not high; sometimes, when I experience more pain, the inflammatory markers are even lower than when I felt less discomfort.
I don’t understand what’s going on.
My attending physician mentioned that my rheumatoid factor is negative, and genetic testing did not show any matches.
The diagnosis was based on X-rays and MRI.
The MRI of my left knee indicated synovitis, while the X-ray of my upper body showed some inflammation in the hip and shoulder joints.
However, since the onset of my condition, especially recently, there have been frequent occurrences where the inflammatory markers and pain do not correlate at all.
Additionally, when my joints hurt significantly, I sometimes experience blurred vision and severe fatigue, to the point of sleeping for six hours.
I also feel inexplicably warm but do not have a fever.
I have researched extensively but cannot find anything that matches my symptoms.
Although I exhibit symptoms of rheumatoid arthritis such as joint swelling, pain, weakness, and stiffness, my family and I are truly puzzled as to why there are no abnormal inflammatory markers despite the obvious symptoms.
I also have mild Mediterranean anemia, and my health check results indicated slightly elevated uric acid levels.
I hope this information can serve as a reference for the physician.
These pains have troubled me for three years now, and I hope the doctor can help clarify my doubts.
Thank you very much for reading this.

Yihuo de ren, 10~19 year old female. Ask Date: 2018/05/25

Dr. Gao Jiankai reply Internal Medicine

Hello, thank you for your question.
Juvenile rheumatoid arthritis (JRA) or juvenile idiopathic arthritis (JIA) is different from adult rheumatoid arthritis, so juvenile rheumatoid arthritis does not directly transition into rheumatoid arthritis in adulthood.
Therefore, some patients with juvenile rheumatoid arthritis continue to be monitored in pediatric care even after reaching adulthood.
Due to differences in etiology and pathophysiology, juvenile rheumatoid arthritis follows its own disease course, and it is important to monitor inflammatory markers as well as assess the "number of painful joints" and "number of swollen joints." Sometimes, a high number of painful and swollen joints may not correlate with elevated inflammatory markers.
Thus, in the process of monitoring arthritis, we do not solely focus on whether inflammatory markers are high or low; we also pay attention to the number of painful and swollen joints, as these are important references for prognosis and treatment adjustments.
I believe you can discuss your concerns with your physician, as communication can be extremely helpful for your condition.
After all, any symptoms described in your question, no matter how detailed, cannot replace the value of an in-person examination, making your physician very important.
The Allergy, Immunology, and Rheumatology Department of Changhua Hospital, Ministry of Health and Welfare, cares about you.

Reply Date: 2018/05/25

More Info

Understanding the complexities of juvenile rheumatoid arthritis (JRA) can be quite challenging, especially when symptoms do not align with typical inflammatory markers. Your experience of joint pain, swelling, and the absence of classic signs of inflammation such as redness and heat, alongside fluctuating inflammatory markers, raises important questions about the nature of your condition.

Juvenile rheumatoid arthritis is an autoimmune disorder that primarily affects children and can manifest in various ways. The symptoms you describe—pain in multiple joints, swelling, and the presence of synovitis (as indicated by your MRI results)—are indeed consistent with JRA. However, the inconsistency between your pain levels and inflammatory markers is not uncommon in autoimmune diseases.
1. Inflammatory Markers and Pain Discrepancy: It is essential to understand that the presence of inflammation in the body does not always correlate with the levels of inflammatory markers in the blood, such as C-reactive protein (CRP) or erythrocyte sedimentation rate (ESR). In some cases, patients may experience significant pain and swelling without a corresponding increase in these markers. This phenomenon can occur due to various factors, including the body's unique inflammatory response, the presence of chronic inflammation, or even the timing of blood tests in relation to flare-ups.

2. Negative Rheumatoid Factor and Genetic Testing: The fact that your rheumatoid factor is negative and genetic testing did not reveal any significant markers does not rule out JRA. Many patients with JRA can be seronegative, meaning they do not have detectable levels of rheumatoid factor or other antibodies typically associated with rheumatoid arthritis. The diagnosis often relies on clinical evaluation, imaging studies, and the presence of characteristic symptoms rather than solely on laboratory tests.

3. Associated Symptoms: The additional symptoms you mentioned, such as visual disturbances, severe fatigue, and feelings of heat without fever, could be indicative of systemic involvement or other overlapping conditions. Fatigue is a common complaint among individuals with chronic inflammatory diseases and can be exacerbated by pain and sleep disturbances. The presence of Mediterranean anemia may also contribute to your overall fatigue and could complicate your symptoms.

4. Management and Treatment: Given the complexity of your symptoms, it is crucial to work closely with a rheumatologist who specializes in pediatric autoimmune disorders. They can provide a comprehensive evaluation and may consider adjusting your treatment plan. Medications such as nonsteroidal anti-inflammatory drugs (NSAIDs), disease-modifying antirheumatic drugs (DMARDs), or biologics may be beneficial in managing your symptoms and controlling inflammation.

5. Lifestyle and Supportive Measures: In addition to medication, incorporating physical therapy, regular exercise, and a balanced diet can help manage symptoms. Physical therapy can improve joint function and reduce stiffness, while a diet rich in anti-inflammatory foods may support overall health.

6. Monitoring and Follow-Up: Regular follow-up appointments are essential to monitor your condition and adjust treatment as necessary. Keeping a symptom diary can also help track flare-ups and identify potential triggers, which can be valuable information for your healthcare provider.

In conclusion, your experience with juvenile rheumatoid arthritis highlights the complexity of autoimmune diseases and the variability in symptom presentation. It is essential to maintain open communication with your healthcare team, advocate for your health, and explore all available treatment options to improve your quality of life. Your concerns are valid, and seeking clarity and support is a crucial step in managing your condition effectively.

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