Adult Still's Disease: Symptoms and Immune System Flare-Ups

Immune system dysfunction in adults with Still's disease?

Hello Doctor: I have an immune system disorder (the doctor has diagnosed me with suspected "Adult Still's Disease" on the medical certificate).
Due to the recent pandemic, I haven't been able to attend follow-up appointments or have blood tests for several months.
Previously, when my condition was severe, my inflammatory markers spiked over 10,000.
This illness has been with me for almost three years, and during the worst times, I experienced high fevers and rashes on two occasions.
I managed these symptoms with targeted therapy, but in the past six months, my symptoms have significantly improved, and I have reduced my medication dosage, sometimes even skipping doses.
I am reaching out because yesterday afternoon, I suddenly felt dizzy and had chest tightness.
After returning home, I experienced a full-body heat sensation, skin pain, and chills, feeling extremely weak and curled up under the blanket.
I measured my temperature at 37.6°C and was concerned about possibly contracting the virus, but I did not have a cough, runny nose, or loss of taste, leading me to suspect it might be related to my immune system and whether my inflammatory markers had spiked again.
Later, I took the medications prescribed by my doctor, such as Wancs and Dexamethasone, and also purchased Tylenol and a hot lemon drink from the pharmacy.
After drinking one packet and sleeping for two hours, I felt better, and my temperature returned to around 36°C.

I would like to ask you, what could these symptoms indicate? Why did they occur suddenly? Could it be because I haven't been taking my medication recently? These symptoms should not be related to the pandemic, right? I look forward to your response.
Thank you!

Xing, 20~29 year old female. Ask Date: 2021/07/12

Dr. Gao Jiankai reply Internal Medicine

Hello, thank you for your message.
The inflammation index you mentioned, which is over ten thousand, could possibly refer to the ferritin level, which is an indicator of adult Still's disease and also serves as a reference for disease stability.
Given that your levels were once so high and you required targeted therapy to manage your condition, I recommend that you continue to have regular follow-up appointments to monitor disease activity, even if you are not currently on medication.
It is quite challenging to determine based solely on your symptoms whether it is disease activity or just a common viral infection, as Still's disease can have recurrent episodes with varying severity of symptoms.
To avoid missing the possibility of disease flare-ups, it would be best to return for an examination.
The Allergy, Immunology, and Rheumatology Department of Changhua Hospital, Ministry of Health and Welfare, is concerned about you.

Reply Date: 2021/07/12

More Info

Understanding Adult Still's Disease (ASD) is crucial, especially for those who are experiencing symptoms and flare-ups related to this condition. Adult Still's Disease is a rare form of inflammatory arthritis characterized by high fevers, salmon-colored rashes, and joint pain. It is classified as a systemic autoinflammatory disease, which means it involves the immune system and can lead to systemic inflammation throughout the body.

From your description, it seems you have been managing your condition for some time, and while you have experienced periods of relief, your recent symptoms suggest a potential flare-up. The symptoms you mentioned—dizziness, chest tightness, fever, and skin pain—can indeed be associated with an immune system flare-up. In ASD, flare-ups can occur due to various triggers, including stress, infections, or even changes in medication.
Your elevated inflammatory markers in the past, particularly when they reached over 10,000, indicate significant inflammation, which is common in ASD. The fact that you have been able to reduce your medication and experience fewer symptoms is a positive sign, but it is essential to remain vigilant. The sudden onset of symptoms you experienced could be due to a variety of factors. It is possible that the lack of regular medication, especially if you have been tapering off or not taking it consistently, could lead to a resurgence of inflammation.
Additionally, while you mentioned concerns about COVID-19, your symptoms do not align closely with typical viral infection symptoms, especially since you did not experience respiratory symptoms or loss of taste and smell. However, it is still important to consider that infections can exacerbate underlying autoimmune conditions, including ASD.
The management of Adult Still's Disease typically involves the use of non-steroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and disease-modifying antirheumatic drugs (DMARDs) or biologics in more severe cases. It is crucial to have regular follow-ups with your healthcare provider to monitor your inflammatory markers and adjust your treatment plan as necessary.
In your case, since you have not had a follow-up in several months, it would be advisable to schedule an appointment soon. Regular monitoring can help catch any potential flare-ups early and allow for timely intervention. It is also important to maintain a healthy lifestyle, manage stress, and stay informed about your condition.
In summary, your recent symptoms could be indicative of a flare-up of Adult Still's Disease, potentially exacerbated by changes in your medication regimen. It is essential to consult with your healthcare provider for a thorough evaluation and to discuss the best course of action moving forward. Regular monitoring and proactive management are key to maintaining your health and minimizing the impact of this condition on your daily life.

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