Healthcare Professionals Treating Sjögren’s Disease

When it comes to managing Sjögren’s disease, many Sjögren’s patients work with a number of doctors and other healthcare providers. Some of these providers may be considered specialists — or providers who are experts in a specific type of medical care. 

The healthcare professionals that make up your Sjögren’s care team can help you make sure you’re getting the proper care you need to manage Sjögren’s effectively.

Healthcare Professionals Who Treat Sjögren’s Disease

The healthcare providers you see to help you manage Sjögren’s disease depend on your particular situation and symptoms. They may include:

• Your primary care provider
• A rheumatologist
• An ophthalmologist or optometrist
• Your dentist
• An ear, nose, and throat (ENT) specialist
• A dermatologist
• A gynecologist
• A mental health professional
• Other specialists, depending on which parts of your body are impacted by Sjögren’s disease

Primary Care Providers

Your primary care provider (also called a PCP) may be a doctor or another type of health professional, such as a nurse practitioner (NP) or physician assistant (PA). They provide general healthcare to patients, including:

• Providing preventive care (such as a yearly physical or vaccinations)
• Diagnosing medical conditions
• Treating common illnesses or health problems
• Connecting patients with specialists to treat more complex health problems

Your PCP is generally the doctor you see the most. They help you manage your overall health long-term.

For many people with Sjögren’s, their PCP is the main healthcare professional who helps them manage Sjögren’s disease. PCPs may:

• Evaluate and diagnose Sjögren’s disease
• Prescribe medicines to treat Sjögren’s symptoms
• Help you come up with a Sjögren’s care plan
• Refer you to specialists to treat more complex Sjögren’s symptoms, as needed
• Ensure you are staying up-to-date on your non-Sjogren's related healthcare needs

Rheumatologists

Rheumatologists are doctors that specialize in diagnosing and treating diseases like Sjögren’s. Rheumatologists may help a person with Sjögren’s by:

• Testing for and diagnosing Sjögren’s disease
• Assessing whether a person has more than 1 autoimmune disease (for example, having Sjögren’s and lupus or Sjögren’s and rheumatoid arthritis)
• Monitoring how Sjögren’s progresses and how it’s impacting the body
• Working with Sjögren’s patients to come up with a management plan that meets their needs and goals
• Prescribing medicines to treat Sjögren’s disease
• Referring patients to other specialists for care, as needed

Depending on how severe your Sjögren’s disease is and whether you have access to rheumatologist, they may be the main healthcare provider who helps you manage Sjögren’s disease. 

Ophthalmologists and Optometrists

Ophthalmologists and Optometrists are eye doctors. They specialize in diagnosing and treating eye diseases and vision problems. Ophthalmologists generally treat more complex eye and vision problems and can perform eye surgery, if needed.

Ophthalmologists and optometrists are an important part of Sjögren’s disease care. They can:

• Evaluate and diagnose dry eye — a common symptom of Sjögren’s disease
• Prescribe medicines to help manage dry eye, such as prescription eye drops
• Recommend other over-the-counter products that may help with dry eye
• Monitor eye health and check for signs of vision problems caused by Sjögren’s
• Perform procedures to help with dry eye, such as inserting punctal plugs (small plugs that help tears stay on the eye’s surface longer by blocking glands that drain tears away from the eye)
• Fit Sjögren’s patients for devices called scleral lenses, which help to hold moisture in the eye
• Ophthalmologists can also conduct surgeries, such as cataract surgery, which can be more complex for a Sjogren's patient and their recovery.

Dentists

Dentists are a key part of Sjögren’s disease care. They can help:

• Evaluate and diagnose dry mouth — another common Sjögren’s symptom
• Prescribe medicines to manage dry mouth, or recommend over-the-counter products that may help
• Monitor your overall oral (mouth) and dental health
• Check for signs of cavities and tooth decay (Sjögren’s patients have a higher risk of these problems)

It’s very important for Sjögren’s patients to see their dentist regularly. Most people should see their dentist and get a teeth cleaning at least twice per year, but if you have Sjögren’s, you may need to go more often (for example, every 3 to 4 months). Ask your dentist what they recommend.

Ear, Nose, and Throat Specialists

Ear, nose, and throat (ENT) doctors specialize in diagnosing and treating problems that affect the ears, nose, and throat. For Sjögren’s patients, they may:

• Biopsy (take a small tissue sample from) the salivary glands (glands that produce saliva) to evaluate or diagnose Sjögren’s
• Measure saliva flow to evaluate or diagnose Sjögren’s
• Help manage bothersome symptoms, like dry throat or trouble swallowing

Dermatologists

Dermatologists are doctors who specialize in caring for the skin, hair, and nails. Many Sjögren’s patients experience signs and symptoms that affect the skin, hair, and nails. Dermatologists play an important role in Sjögren’s care, including:

• Evaluating and diagnosing skin problems associated with Sjögren’s, such as xerosis (dry skin), hives (raised, red, itchy bumps) or other rashes that may be part of Sjogren’s (such as sun/heat-induced rashes).
• Evaluating and diagnosing hair and nail problems associated with Sjögren’s (like hair loss or dry, brittle nails)
• Prescribing medicines to help manage skin, hair, and nail problems
• Giving advice on how to care for skin, hair, and nails, such as tips for keeping the skin moisturized

Gynecologists

Gynecologists are doctors who specialize in women’s sexual and reproductive health. They can help Sjögren’s patients by:

• Diagnosing problems associated with Sjögren’s disease, such as vaginal dryness, atrophy, or pain during sex
• Recommending treatments for bothersome symptoms (for example, vaginal moisturizers or lubricants to help with dryness)

Mental Health Professionals

Living with Sjögren’s can have a big impact on a person’s overall wellbeing, mood, stress levels, and self-esteem. It’s common for people managing long-term illnesses like Sjögren’s to experience mental health challenges, like stress, anxiety, or depression.

For those patients, working with a mental health professional can give them support and help them find strategies for managing the mental health impacts of the disease.

Mental health professionals may include:

• Psychiatrists
• Psychologists
• Licensed professional counselors
• Social workers
• Mental health nurses

Mental health treatment generally involves either or both talk therapy (also called counseling) and medicines. Keep in mind that only certain types of mental health professionals are able to prescribe medicines.

Other Specialists

Depending on how Sjögren’s is impacting you and your body, you may see additional specialists. These may include:

• Neurologists (doctors who specialize in caring for the nervous system, including the brain, spinal cord, and nerves) — They diagnose and treat problems like migraines, neuropathy, or sleep problems.
• Nephrologists (doctors who specialize in caring for the kidneys) — They diagnose and treat kidney problems.
• Cardiologists (doctors who specialize in caring for the heart and blood vessels) — They diagnose and treat problems like high blood pressure, irregular heart beat, or vasculitis (inflammation of the blood vessels).
• Pulmonologists (doctors who specialize in lungs). They diagnose and treat lung fibrosis and interstitial lung disease.
• Oncologists (doctors who treat blood disorders and cancers).

Challenges to Accessing Specialist Care for Sjögren’s Disease

Sometimes, it can be difficult for Sjögren’s patients to access specialist care. Whether a person can see a specialist depends on factors like:

• Where they live — People living in rural areas are less likely to have specialists nearby.
• Access to transportation — Some people may not have access to a car or public transportation to be able to travel to see a specialist.
• Cost — Specialist care may be expensive, even for people who have insurance.
• Availability — Patients may need to wait a long time before a specialist has availability to see them.
• Whether they need a referral — Some types of insurance plans require a referral from a PCP before they’ll cover the cost of seeing a specialist.

If you’re facing challenges to getting the Sjögren’s care you need, know that you’re not alone. Navigating the healthcare system can be confusing and frustrating. 

If you’re concerned about getting specialist care, try talking with your PCP or a Sjögren’s Foundation Support Group and ask other patients who they see. They can offer support and help you get the care you need.

Tips for Coordinating Your Sjögren’s Care

Keep in mind that if you’re seeing multiple providers for your Sjögren’s care, they might not all have access to the same information about your health history, other appointments, or Sjögren’s care plan. This is especially true if you see doctors who work for different healthcare systems or hospitals.

As a Sjögren’s patient, you may need to help keep all of your providers on the same page. Follow these tips to help you get the most from your Sjögren’s care:

• Lean on your PCP to help you coordinate your care — Primary care physicians can be great resources for helping you keep track of your Sjögren’s care. Be sure to keep them updated on which specialists you are seeing and which treatments you’re getting from them. PCPs can also refer you to other specialists, as needed.
• Keep your own health history record — Bring a list of your current medicines, specialists you’re seeing, and procedures you’ve had to each appointment. Also include a Sjögren’s disease profile that your PCP can help you create, that includes the key medical diagnosis for you. Additionally, share if there are any new or worsening symtpoms. Ask your doctor to review the list so that they’re aware of the other care you’ve received.
• Ask specialists to share information with one another — Although your doctors may not work together directly, you can ask them to send notes to each other or call to discuss treatment plans, when needed. It helps to have an updated list of each doctor you see and their contact information to make this process easier.

Coordinating care between specialists can be challenging, especially on top of managing Sjögren’s disease symptoms. But it’s one of the best ways you can advocate for yourself and get the most out of your Sjögren’s care team.