Do You Really Need Medication for Sjögren's Syndrome?

Do patients with Sjögren's syndrome always need to take medication?

I have been experiencing dry eyes for 15 years, long-term hair loss for the past 10 years, and have developed vitiligo in the last 6 years, with my hair turning white quickly.
I have thyroiditis that only requires monitoring, and I have adenomyosis (for 12 years), for which I underwent a 2/3 hysterectomy.
Recently, I was diagnosed with Sjögren's syndrome at Taipei Veterans General Hospital.
Given these issues, do I necessarily need to take medication for treatment? I have high myopia and floaters, and I am concerned about the side effects of immunosuppressive drugs.
I'm unsure what to do.
Additionally, should I inform any physician, including gynecologists, about my Sjögren's syndrome?

kk, 40~49 year old female. Ask Date: 2017/10/12

Dr. Gao Jiankai reply Internal Medicine

Hello, thank you for your question.
The symptoms of Sjögren's syndrome can vary in severity, which will determine whether the physician prescribes medication.
In addition to your subjective experience of symptoms, regular blood test results should also be evaluated.
Some patients with Sjögren's syndrome may indeed not be on medication.
There are many reasons for this, including mild symptoms, polypharmacy, side effects of medications, or the patient's personal decision not to take medication.
However, even if you are not on medication, I still recommend that patients with Sjögren's syndrome undergo regular follow-up examinations, as untreated Sjögren's syndrome may have a higher risk of developing lymphoma.
Therefore, whether medication is necessary should be discussed with your physician, including a discussion of your symptoms and test results, to jointly decide if medication can be avoided.
Additionally, it is advisable to inform every physician you encounter that you have Sjögren's syndrome.
Best regards from the Allergy, Immunology, and Rheumatology Department of Changhua Hospital, Ministry of Health and Welfare.

Reply Date: 2017/10/12

More Info

Sjögren's syndrome is an autoimmune disorder characterized primarily by dry eyes and dry mouth due to the destruction of the glands that produce these fluids. It can also affect other parts of the body, leading to a variety of symptoms and complications. Given your history of dry eyes for 15 years, hair loss, vitiligo, thyroiditis, and adenomyosis, it is understandable that you are concerned about the implications of your recent diagnosis of Sjögren's syndrome and the potential need for medication.

When it comes to managing Sjögren's syndrome, the decision to use medication depends on the severity of your symptoms and how they impact your quality of life. While some patients may experience mild symptoms that can be managed with over-the-counter lubricating eye drops and saliva substitutes, others may require more aggressive treatment, especially if they are experiencing significant discomfort or complications.

1. Medication Options: Common medications for Sjögren's syndrome include:
- Artificial tears and saliva substitutes: These can help alleviate dryness in the eyes and mouth.

- Pilocarpine (Salagen) and Cevimeline (Evoxac): These medications stimulate saliva production and can be beneficial for patients with severe dry mouth.

- Immunosuppressive drugs: In cases where systemic symptoms are present, such as joint pain or fatigue, medications like corticosteroids or disease-modifying antirheumatic drugs (DMARDs) may be considered.

2. Concerns About Side Effects: It is important to discuss your concerns about side effects with your healthcare provider. While medications can have side effects, the benefits often outweigh the risks, especially if your quality of life is significantly affected by your symptoms. Your doctor can help you weigh the pros and cons of each medication and may suggest starting with lower doses or alternative therapies to minimize side effects.

3. Monitoring and Follow-Up: Regular follow-up appointments are crucial for managing Sjögren's syndrome. Your doctor will monitor your symptoms and any side effects from medications, adjusting your treatment plan as necessary. If you experience side effects from one medication, there may be alternatives that could work better for you.

4. Communication with Other Healthcare Providers: It is essential to inform all your healthcare providers about your Sjögren's syndrome diagnosis. This includes specialists such as gynecologists, endocrinologists, and any other doctors you may see. Sjögren's syndrome can affect various body systems, and your providers need to be aware of your condition to provide the best care possible.

5. Lifestyle Modifications: In addition to medication, lifestyle changes can help manage symptoms. Staying hydrated, using humidifiers, and avoiding irritants can improve your comfort. Regular eye exams are also important, especially since you have a history of high myopia and floaters.

In conclusion, while medication may not be strictly necessary for everyone with Sjögren's syndrome, it can significantly improve quality of life for many patients. It is crucial to have an open dialogue with your healthcare provider about your symptoms, concerns regarding medications, and any potential side effects. Together, you can develop a personalized treatment plan that addresses your specific needs and preferences.

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