When to Start Medication for Sjögren's Syndrome: A Patient's Dilemma

When is the appropriate time to initiate medication treatment for Sjögren's syndrome?

Hello, Doctor Gao: Two years ago, a family member was diagnosed with Sjögren's syndrome.
At that time, the only symptom was mild dry mouth, so no medication was prescribed.
However, in the past four months, they have started experiencing stiffness in their fingers upon waking up.
The doctor mentioned that only quinine could be taken, but it is uncertain whether it would improve the finger stiffness symptoms, and also stated that since the symptoms are mild, medication is not necessary.
My question is, if the symptoms are currently mild and no immunomodulatory medication (quinine) is being taken for treatment, could this lead to poor disease management and potentially cause other complications in the future? Thank you.

Guo Xiaojie, 40~49 year old female. Ask Date: 2023/11/30

Dr. Gao Jiankai reply Internal Medicine

Hello, thank you for your question.
If there are signs of disease activity in Sjögren's syndrome, including abnormal blood test results and associated clinical symptoms such as skin petechiae and pulmonary symptoms, the risk of developing related complications, including lymphoma, is higher without treatment.
In this case, I would recommend medication, particularly quinine.
If the symptoms are limited to dry mouth, dry eyes, and joint pain, with normal blood test results, symptomatic treatment and regular blood tests may suffice.
Quinine can also be effective for joint symptoms, so it may be worth trying.
Quinine is not a pain reliever; it is an immunomodulatory medication that needs to be taken continuously, which some people may find undesirable.
This is from the Allergy, Immunology, and Rheumatology Department of Changhua Hospital, Ministry of Health and Welfare, caring for you.

Reply Date: 2023/11/30

More Info

Sjögren's syndrome is a chronic autoimmune disorder characterized primarily by dry mouth (xerostomia) and dry eyes (keratoconjunctivitis sicca). It can also affect other organs and systems, leading to a variety of symptoms. The decision to start medication for Sjögren's syndrome can be complex, especially when symptoms are mild.
In your case, your family member was diagnosed two years ago with only mild symptoms of dry mouth and has recently developed stiffness in the fingers upon waking. This stiffness could be indicative of an inflammatory process, potentially related to Sjögren's syndrome or another underlying condition. The recommendation from the physician to consider quinine is somewhat unusual, as quinine is primarily used for muscle cramps and not typically for Sjögren's syndrome or its related symptoms.
When considering whether to start medication, it is essential to weigh the potential benefits against the risks and side effects. In Sjögren's syndrome, treatment is often symptom-driven. For mild symptoms, conservative management may be sufficient, including the use of artificial tears for dry eyes and saliva substitutes for dry mouth. However, if symptoms progress or if there are signs of systemic involvement (such as joint stiffness, fatigue, or other autoimmune manifestations), it may be prudent to consider disease-modifying therapies.

The concern about not controlling the disease adequately is valid. Sjögren's syndrome can lead to complications, including increased risk of lymphoma, dental issues due to dry mouth, and other autoimmune conditions. Early intervention can sometimes prevent these complications. If your family member's symptoms are worsening or if there is a concern about potential progression, it may be beneficial to consult a rheumatologist or a specialist in autoimmune diseases. They can provide a more comprehensive evaluation and discuss the potential need for immunomodulatory therapy.

In summary, while mild symptoms may not necessitate immediate medication, the emergence of new symptoms such as finger stiffness should prompt a reevaluation of the treatment plan. It is crucial to maintain open communication with healthcare providers and consider a multidisciplinary approach to manage Sjögren's syndrome effectively. Regular monitoring and reassessment of symptoms can help in making informed decisions about when to initiate medication.

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