Sjögren's Syndrome: Navigating Conflicting Diagnoses and Treatment Options

Regarding Shy-Drager syndrome?

Hello Doctor: I have many questions that are troubling me, and I would like to ask for your help or suggestions.
Last September, I was diagnosed with Sjögren's syndrome after visiting a rheumatology and immunology clinic.
My blood test results showed no abnormalities in my immune system (no antibodies present).
However, the doctor mentioned that my platelet count was elevated (around 450,000).
The doctor was also puzzled by this, as it is usually expected to be low, and my erythrocyte sedimentation rate was also elevated.
Despite this, the doctor still believed my symptoms were consistent with Sjögren's syndrome.
They arranged for a salivary gland scan, which indicated delayed saliva secretion on the left side, and a biopsy was performed, which showed signs of infiltration.
Subsequently, I was prescribed quinine for several months, but I still experienced soreness, and my dry eye and dry mouth symptoms persisted.
I decided to visit a larger hospital for further evaluation.
In January of this year, I went to Taichung Veterans General Hospital, where I underwent blood tests and scans.
I also had tests for tear and saliva production using test strips and cotton swabs, and the results for both blood tests and scans were normal.
The doctor told me that I have simple dry syndrome, not immune-related dry syndrome, and advised me to stop taking medication.
I did stop for a month, but the original doctor insisted that I definitely have Sjögren's syndrome because the biopsy results are more accurate.
He advised me not to stop the quinine, as it could worsen my condition, leaving me feeling helpless.
I am unsure which opinion to trust, and I also visited Tzu Chi Hospital and Chang Gung Memorial Hospital in Chiayi, where both stated that my blood tests were normal.
I am truly at a loss about what to do.
Chang Gung performed tear tests (which indicated sufficient tear production), and Tzu Chi also conducted tests (the ophthalmologist noted signs of dryness).
There are conflicting opinions, and I feel frustrated.
I am worried that if I truly have Sjögren's syndrome and do not take medication, my condition may worsen.
Without corticosteroids, could my lungs become fibrotic? I hope you can help clarify my doubts.
Thank you.

Xiao Mei, 20~29 year old female. Ask Date: 2005/05/16

Dr. Zeng Guosen reply Internal Medicine

Hello, the diagnosis of Guillain-Barré syndrome follows specific standard procedures and cannot be made solely based on a biopsy.
The use of quinine in the treatment of Guillain-Barré syndrome is not essential and may not always be effective, so there is no need for concern.
Initially, symptomatic treatment is the primary focus, and if there are immune abnormalities, then corticosteroids or quinine may be considered.
Sincerely, Dr.
Kuo-Sen Tseng, Internal Medicine.

Reply Date: 2005/05/16

More Info

Understanding Sjögren's Syndrome can indeed be a complex and sometimes confusing journey, especially when faced with conflicting diagnoses and treatment recommendations. 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. It can occur as a primary condition or secondary to other autoimmune diseases, such as rheumatoid arthritis or lupus.

In your case, the initial diagnosis of Sjögren's Syndrome was based on clinical symptoms and the results of a salivary gland biopsy, which showed lymphocytic infiltration. This is a common finding in Sjögren's and supports the diagnosis. However, the subsequent tests at different hospitals indicated normal blood results, leading to confusion about whether you have primary Sjögren's Syndrome or simply a form of dry syndrome without autoimmune involvement.

The discrepancy in diagnoses can arise from several factors:
1. Variability in Symptoms: Sjögren's Syndrome can present with a wide range of symptoms, and not all patients will have the same laboratory findings. Some may have elevated inflammatory markers, while others may not. The presence of dry eyes and mouth is crucial, but the absence of specific antibodies (like anti-SSA or anti-SSB) does not entirely rule out the condition.

2. Diagnostic Criteria: Different healthcare providers may use varying criteria to diagnose Sjögren's. While some may rely heavily on serological tests, others may place more emphasis on clinical symptoms and biopsy results. This can lead to differing opinions on the diagnosis.

3. Treatment Decisions: The treatment for Sjögren's often focuses on symptom management. Medications like quinine may be prescribed to help with symptoms, but they are not universally required for all patients. If your symptoms persist despite treatment, it may be worth discussing alternative therapies or adjustments with your healthcare provider.

4. Monitoring and Follow-Up: Given the autoimmune nature of Sjögren's, regular follow-up is essential. Conditions like lung fibrosis can develop in some patients with autoimmune diseases, but this is not universally the case. Monitoring your symptoms and any new developments is crucial. If you experience new symptoms, such as persistent cough or shortness of breath, it is important to report these to your physician.

5. Seeking a Second Opinion: If you feel uncertain about your diagnosis or treatment plan, seeking a second opinion from a rheumatologist or a specialist in autoimmune diseases can provide clarity. They may offer additional tests or a different perspective on your condition.

In summary, navigating the complexities of Sjögren's Syndrome requires patience and open communication with your healthcare providers. It is essential to advocate for yourself and ensure that your concerns are addressed. If you are experiencing persistent symptoms, do not hesitate to seek further evaluation or treatment options. Remember that autoimmune conditions can be unpredictable, and ongoing monitoring is key to managing your health effectively.

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