Managing Sjögren's Syndrome: To Medicate or Not? Insights and Risks

Sjögren's syndrome

Hello, Doctor! Three years ago, I experienced stiffness in my fingers upon waking up in the morning, which resolved after two to three minutes.
Initially, I suspected rheumatoid arthritis.
Blood tests showed elevated anti-ENA at 3.7 and Ro at 45.6, while the rest were normal.
An eye examination indicated dry eye syndrome, and a salivary gland nuclear imaging test showed mild inflammation, but I do not experience dry mouth.
The doctor diagnosed me with dry eye syndrome and prescribed Hydroxychloroquine for nearly two years.
There has been no change in my condition, and last year's tests only showed elevated Ro levels.
During these two years, I consulted other physicians, two of whom believed that medication was unnecessary and that regular monitoring would suffice.
I have now been off medication for nearly a year.
Given my situation, is it really unnecessary for me to take medication? Why do different doctors have varying opinions? What are the risks of not taking medication? Thank you!

Mr. Huang, 60~69 year old female. Ask Date: 2017/02/27

Dr. Gao Jiankai reply Internal Medicine

Hello Mr.
Huang, thank you for your question.
Sjögren's syndrome is considered a mild condition among rheumatic diseases, so whether medication is necessary, especially for long-term treatment, may vary among physicians.
Personally, I believe that if the diagnostic criteria are met, and the patient has symptoms that affect their daily life along with abnormal laboratory markers indicating disease activity, I would recommend medication.
For patients who meet the diagnostic criteria but do not have symptoms affecting their daily life and have normal disease activity markers, monitoring may be an option.
However, it is important to note that untreated patients with Sjögren's syndrome have a higher risk of developing lymphoma compared to the general population, so regular follow-up visits are strongly advised.
Regarding the frequency of follow-up, I recommend at least every three to six months for blood tests.
If any unexplained symptoms occur during this period, an earlier follow-up appointment should be scheduled to detect any changes in the condition early on.
The Allergy, Immunology, and Rheumatology Department of Changhua Hospital, Ministry of Health and Welfare, cares about you.

Reply Date: 2017/02/27

More Info

Managing Sjögren's Syndrome can be quite complex, especially when it comes to deciding whether to medicate or not. Your situation reflects a common dilemma faced by many patients with this condition. Sjögren's Syndrome is an autoimmune disorder characterized primarily by dry eyes and dry mouth due to the immune system attacking the glands that produce these fluids. The presence of anti-Ro antibodies and the symptoms you've described suggest that you may indeed have Sjögren's Syndrome, even if you do not experience severe dryness.

To Medicate or Not?
The decision to medicate often depends on the severity of symptoms and the impact they have on daily life. Hydroxychloroquine (Plaquenil) is commonly prescribed for Sjögren's Syndrome as it can help manage symptoms and reduce inflammation. However, it is not a cure, and its effectiveness can vary from person to person. Some patients may experience significant relief, while others may find little to no change, as you have noted in your case.

Different Medical Opinions
The differing opinions among healthcare providers regarding the necessity of medication can stem from several factors:
1. Individual Variability: Each patient's experience with Sjögren's can be unique. Some may have mild symptoms that do not warrant medication, while others may have more severe manifestations that require treatment.

2. Symptom Management: If your symptoms are mild and manageable, some doctors may advocate for a watchful waiting approach rather than immediate medication. This is particularly true if you are not experiencing significant discomfort or complications.

3. Potential Side Effects: Hydroxychloroquine, while generally well-tolerated, can have side effects, including retinal toxicity with long-term use. Physicians may weigh the risks of medication against the benefits, especially if symptoms are not severe.

4. Monitoring Disease Progression: Regular check-ups and monitoring are crucial in autoimmune diseases. If your condition is stable and not progressing, some doctors may feel comfortable advising against medication.

Risks of Not Taking Medication
Choosing not to medicate can carry certain risks, particularly if your symptoms worsen or if there are complications associated with Sjögren's Syndrome. These may include:
1. Increased Dryness: Over time, the dryness in the eyes and mouth can lead to more severe complications, such as corneal damage or dental issues.

2. Systemic Involvement: Sjögren's can sometimes affect other organs, leading to complications such as fatigue, joint pain, or even more serious conditions like lymphoma. Without treatment, there may be a risk of these complications developing.

3. Quality of Life: Chronic dryness and discomfort can significantly impact your quality of life. If symptoms worsen, it may lead to increased fatigue, difficulty in swallowing, or problems with speaking.

Conclusion
In conclusion, the decision to medicate for Sjögren's Syndrome should be made collaboratively with your healthcare provider, taking into account your specific symptoms, lifestyle, and any potential risks. If you have been stable without medication for a year and your symptoms remain manageable, it may be reasonable to continue monitoring your condition without medication. However, it is essential to stay vigilant for any changes in your symptoms and to maintain regular follow-ups with your healthcare provider. If you notice any worsening of symptoms or new complications, it would be prudent to revisit the conversation about medication. Always feel empowered to seek a second opinion if you feel uncertain about your treatment plan.

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