Searching for a Sjögren’s disease specialist can be a long journey. Many people with Sjögren’s spend years visiting different doctors and looking for answers. In some cases, their symptoms may be dismissed as dehydration or part of normal aging. It takes an average of three years from the time someone with Sjögren’s has symptoms to the moment they’re accurately diagnosed.

It’s important to know you’re not alone. Real help is available once you know where to look. These are the different specialists who can treat the symptoms of Sjögren’s.

Why You Should Seek Specialist Care

The main symptoms of Sjögren’s disease are dry eyes and dry mouth. But Sjögren’s is an autoimmune disease that impacts the whole body. In addition to dryness, some people may experience digestive issues, joint pain, and other symptoms. Some physicians may be more likely to see these as isolated symptoms rather than recognize the underlying cause, which is Sjögren’s.

A specialist may be more familiar with the complexities of Sjögren’s, especially if they have experience with treating this autoimmune disorder. They may understand how addressing Sjögren’s can help resolve multiple symptoms at once. They may also be able to provide you with more specific care. A specialist is more likely to be familiar with the increased risk of complications that can come from the disease.

Another important benefit is that the right specialist can help you feel heard. Once you feel your concerns are valid, you can breathe a sigh of relief.

Get Started With a Rheumatologist

The most common specialist that people with Sjögren’s will need is a rheumatologist. Rheumatologists are medical doctors who specialize in treating autoimmune diseases. A rheumatologist will be the one to give you an official diagnosis.

Since there’s no specific diagnostic test for Sjögren’s, the rheumatologist will review your symptoms and medical history and perform a physical exam to rule out other conditions. They’ll also be your main point of contact for treatment and monitoring.

Your primary care doctor might refer you to a rheumatologist if they suspect you have an autoimmune condition. You can also search for a rheumatologist on your own or through your health insurance company.

If you live near any large academic hospitals or research centers, you can look into their staff, departments, and clinical trials. Find out if they work with people who have Sjögren’s and if they’re taking on new patients.

Building a Coordinated Care Team

Once you have an established relationship with a rheumatologist, you may also need to see other specialists to help with specific issues. For Sjögren’s, these often include:

• Dentists
• Ear, nose, and throat doctors
• Eye doctors (ophthalmologists)

Other specialists may also be involved, depending on how Sjögren’s impacts your body. If it affects your digestive system, you may need to see a gastroenterologist and a dietitian. For your lungs, a pulmonologist or respiratory therapist can help. If your kidneys are affected, you should have a nephrologist on your team. Neurologists may also get involved if you’re having nerve or cognitive problems. Some people with Sjögren’s also have skin rashes and other symptoms that need to be treated by a dermatologist.

People with Sjögren’s may also benefit from finding a mental health counselor or social worker. Sjögren’s can cause symptoms that affect your daily life, including memory loss and fatigue. If these issues get in the way of your ability to work, you may need some extra support.

Some people find healthcare providers through their rheumatologist or primary care doctor. But if you do your own search, make sure your providers communicate with each other. Your primary care doctor may serve as the main point of contact to coordinate care among your other providers.

You can also help the process by taking notes during your medical appointments and bringing them to your other doctor appointments. Either way, it’s important that everyone who is involved in your care stays connected.

Prepare a List of Questions

It’s not always easy to predict how your specialist appointments will go. Even if a provider looks good on paper, you may feel differently after meeting in person. Getting a recommendation from a friend or family member may be a good way to find a provider you like.

You can get a sense of whether they may be a good fit for you by asking a few questions. It’s OK to ask how many people with Sjögren’s this provider has treated, for example. You can also ask about their experience with autoimmune conditions in general. Find out how they coordinate care with other specialists and what symptoms and complications they usually look for.

Even if they don’t have all the answers, you can still get a feel for who they are. If you feel like they’re willing to take the time to address your concerns fully, you may feel more comfortable giving them a chance. If not, you can continue your search to find a provider you can trust.

Navigating Common Roadblocks

Something else to consider is how likely you are to see your healthcare providers. To take advantage of high-quality care, you need to have access to it. Think about your ability to travel to your specialist appointments. It’s helpful to know the details about cancellation policies and whether telemedicine visits are available. If you can’t find a specialist in your area, telehealth can be a good way to access care from your home.

Some specialists can be very busy. If the provider is too busy to see you right away, there may be other providers in their practice who can see you sooner.

Another common issue is the cost of healthcare. It’s a good idea to ask your health insurance company which providers and services are covered in your network. Even if a specialist isn’t in your network, you may still be able to see them. Ask about any additional costs you’ll be responsible for so you don’t have any surprises. Once you talk to your insurance company, run the information by the provider’s office as well. They can help confirm the expected cost.

Besides seeing specialists, it can also help to connect with your peers. Finding a support group of other people who have Sjögren’s disease can help you feel less alone on your journey. Online communities can connect you with people from around the world who relate to your story. For example, you can find resources and build a network by becoming a member of the Sjögren’s Foundation. People in your support group may also help share tips on finding specialists and care.

Join the Conversation

On MySjögrensTeam, people share their experiences with Sjögren’s disease, get advice, and find support from others who understand.

How’s your search for a specialist going? Let others know in the comments below.