FOR THE NEWLY DIAGNOSED
Because Sjogren’s is a complex disease, it requires a team of knowledgeable clinicians to provide comprehensive care. Creating a core health care team is an important priority for new patients. While currently there is no cure for Sjogren's, a lot can be done to alleviate symptoms and prevent complications.
Newly diagnosed Sjogren’s patients face special challenges. The stress of a chronic disease diagnosis is often made worse when patients discover that many clinicians remain unfamiliar with Sjogren’s. There are numerous stories of patients who have had their symptoms downplayed, ignored, or psychologized, both before and after diagnosis. It is common for patients to hear conflicting or incorrect information from their clinicians.
Despite the fact that it is common, serious, and systemic, little attention is given to Sjogren’s by medical education programs. This means that patients often need to educate themselves--and their clinicians-- in order to advocate for comprehensive, up-to-date care. This may seem a bit backwards, and it is! Still, it is a worthwhile investment to try to find providers who are engaged and/or willing to learn about Sjogren’s.
It can be difficult to deal with a new diagnosis, let alone describe your experience to doctors, friends and family. You may want to start with Coping, Communication, and Gaslighting and then come back to this page later.
PACE YOURSELF! This page, and the entire website, is detailed. I suggest that you start by skimming through the page without clicking on the links. That way you can find the information that information that you find most helpful and come back for more later.
Patient Story--What I’ve learned the hard way:
Don't give up, change doctors as often as necessary until you get one that listens. I went through multitudinous eye docs before finding one that didn't simply say, "Well, you're getting old," as though that was the answer. Two pulmonologists until I found my third one who's a keeper. Two rheumatologists and counting.
And given how complex the body is and how it is impossible for every doctor to be thoroughly familiar with every condition that might overlap his/her specialty - do not write off out of hand a doctor who is not well-versed on Sjogren's, but still a) listens; and
b) demonstrates a willingness to research, be educated/learn. That is how I decided the current pulmonologist was a keeper-- he knew of Sjogren's, but that's about it, and was simply following prior pulmonologist’s game plan. ... then phoned me at home and said, "After reading and researching Sjogren's further, I'd like to change your treatment plan." KEEPER!
~ Patient being evaluated for suspected Sjogren’s lung disease, May 2019
Priorities for the newly diagnosed
1. Learn these Sjogren’s basics.
Sjogren’s is a complex systemic disease. It is much more than dryness.
Sjogren’s patients should be treated by a team of knowledgeable clinicians.
Early diagnosis and specialty care are extremely important for Sjogren's patients. Currently, there is no cure for Sjogren's. However, treatments may improve various symptoms and prevent complications."
2. Understand the main goals for treatment.
Improve quality of life, usually by treatment of systemic, eye, and oral manifestations.
Prevent disease progression of both systemic and sicca features.
Screen and monitor for direct complications of Sjogren’s. Prevent when possible and treat as indicated.
Screen and monitor for comorbidities. Prevent when possible, and treat as indicated.
3. Gather a core health care team.
At a minimum, this includes a primary care provider (PCP), a rheumatologist, a dentist, an ophthalmologist, and for women, a gynecologist. Most Sjogren’s patients see at least a few additional specialists. Sometimes a specialist is the first person to suspect--or diagnose--Sjogren’s.
Choosing a PCP and a rheumatologist that are a good fit is usually at the top of the priority list. However, specific symptoms or complications may place other providers at the top of the list.
“Rheumatologists have the primary responsibility for managing Sjogren’s and usually are the lead of your ‘medical team.’"
~ May 2019 Moisture Seekers Newsletter.
Current and back issues of Moisture Seekers are available to SF members at www.sjogrens.org.
Introduction to core health team members
Rheumatologists are the core specialists in charge of Sjogren’s care. Ideally the rheumatologist is the team leader who ensures that comprehensive Sjogren’s management occurs. In reality, the current state of U.S. healthcare prevents many specialists from being able to have a hands-on approach for complex patients. Because care is often fragmented, it might become the patient’s role to seek out specialists for various complications.
Not all rheumatologists see Sjogren’s patients, for a variety of reasons. Prior to an initial consultation, it is a good idea to find out if the rheumatologist routinely cares for Sjogren’s patients. If not, it is probably best to find one who does.
It is the role of the rheumatologist to:
Verify the diagnosis. This is not always straightforward, especially for patients who do not meet the Classification Criteria. In gray area situations, it can be very helpful review the DIAGNOSIS section of Sjogren's Advocate and the MYTHS ABOUT DIAGNOSIS page.
Look for disease mimics during the diagnosis process. Sjogren’s may have overlapping features with many other diseases, including rheumatoid arthritis, systemic lupus erythematosus, multiple sclerosis, hepatitis, IgG-4 related disease and others. Some patients diagnosed with fibromyalgia actually have undiagnosed Sjogren’s. Sjogren's Symptoms Can Look A Lot Like Fibromyalgia.
Look for systemic manifestations and measure disease severity.
Assess and manage fatigue, cognitive dysfunction, and widespread pain which often have the greatest impact on quality of life. These core Sjogren's manifestations are complex and often related, at least in part, to small fiber neuropathy and dysautonomia.
Screen for lymphoma risk factors. Lymphoma is a serious (although often curable) Sjogren’s complication that occurs in 5-10% of patients.
Screen and monitor for common comorbidities, or collaborate with the PC clinician to see that this is done.
Provide treatment and management of systemic (non-sicca) manifestations, with immunomodulators and other medications. Be familiar with:
Clinical Practice Guidelines for Systemic Manifestations. and
Clinical Practice Guidelines for Pulmonary (lung) Manifestations.
Take the lead on the multidisciplinary care team. Refer and discuss management with other specialists as indicated.
Learn more on the blog post, What Is Good Sjogren's Care?
Many patients are offered no treatment for general systemic symptoms. Rheumatologists sometimes tell patients, “Plaquenil does not work,” or “There are no good treatments." These statements are based on inadequate studies, and do not match with the clinical experience of Sjogren's experts. Rheumatologists who say things like this are usually unfamiliar with treatment recommendations available in the Clinical Practice Guidelines (CPGs). CPGs have been created by groups of Sjogren’s experts in both the US (56) and in the UK(57). Both sets of guidelines recommend Plaquenil (usually as the starting medication) and methotrexate for joint and muscle pain, and possibly for fatigue. All clinicians treating Sjogren’s patients should be familiar with current CPGs.
Learn more about Why Treat Sjogren's? and what is known about hydroxychloroquine (Plaquenil) and Sjogren's.
Recommended listening for patients and clinicians: Sjogren’s National Patient Conference lectures about treatment available at https://www.sjogrens.org/shop
Joint Pain and Sjogren’s by Donald E. Thomas, Jr., MD
Includes discussion about treating with Plaquenil to prevent progression.
Sjögren’s – Where Are We in Drug Development? by Daniel J. Wallace, MD – 2016
Includes discussion regarding the flaws with Plaquenil studies in Sjogren's.
Primary Care Provider (PCP)
It is the role of the PCP to:
Provide routine comprehensive health care, especially for non-rheumatologic concerns. Address wide range of issues, including lifestyle, social /emotional and other wellbeing concerns.
Learn about the many systemic manifestations of Sjogren's.
Collaborate with the rheumatologist to determine who takes primary responsibility for overlapping areas of practice such as comorbidities, immunizations, nutrition concerns, etc.
Screen for comorbidities. Offer prevention and treatment as indicated. The PCP often takes the lead role for monitoring/treatment of non-rheumatologic comorbidities such as cardiovascular disease, osteoporosis, sinusitis, and others. Because most PCPs are unaware that these conditions are increased in Sjogren's patients, it is good for patients to provide information and request monitoring.
Provide referrals to rheumatologists and other specialists who are engaged and knowledgeable about Sjogren’s. The patient may need to verify that these specialists are in fact familiar with managing Sjogren’s.
Provide some direct Sjogren’s-related care as needed. Some rheumatologists are unable (or unwilling) to provide comprehensive Sjogren’s care. In this situation, it is especially important that the PCP become familiar with Clinical Practice Guidelines for Systemic Manifestations and Clinical Practice Guidelines for Pulmonary Manifestations.
Ophthalmologists and Optometrists
It is the role of eye doctors to:
Perform diagnostic tests such as Schirmer's test, ocular staining score (OSS), and other tests such as tear breakup time (TBUT). They may order blood tests to screen for Sjogren’s. Occasionally an eye specialist will diagnose Sjogren's first, then refer to rheumatology for general management.
Provide routine dry eye management, including ordering prescription medications/ drops.
Be familiar with Clinical Practice Guidelines, ocular.
An ophthalmologist (MD eye doctor) provides:
Routine retinal screening exams for patients taking hydroxychloroquine (aka Plaquenil).
Procedures such as punctal plugs or punctal cautery.
Screening and treatment of systemic eye complications such as uveitis and scleritis. These conditions are not related to dryness. Systemic eye complications require immediate evaluation by an ophthalmologist.
Ophthalmologist vs. Optometrist
An Ophthalmologist is an MD eye specialist. While many optometrists treat dry eyes, an ophthalmologist should manage anyone with systemic eye complications, severe dry eye disease, or corneal erosions. Scleral lenses are often fitted and managed by specially trained optometrists.
It is the role of the dentist to:
Examine the entire oral region at every checkup: palpates salivary glands, face and neck for swelling and masses in addition to dental exam.
Provide dental caries prevention, screening and treatment. Frequency of preventive visits depends on the level of dryness and decay. Many patients require extensive dental care.
Be familiar with Clinical Practice Guidelines for Oral Management.
Perform diagnostic tests such as salivary flow studies, but typically only in the research setting. A few dentists are trained to perform lip biopsies (MSGB). These are more commonly done by ENTs or oral surgeons familiar with correct biopsy technique.
Sjogren’s may impact any part of the body. Examples of common specialty referrals include neurology, dermatology, pulmonology (lung doctor), ENT, GI and endocrinology.
A separate page will address gynecologic issues in Sjogren’s patients. You may want to listen to the excellent CD lecture about GYN issues by Dr. Melkonian from the 2016 National Patient Conference.
Tips for newly diagnosed patients
It can be overwhelming to try to think about all of your medical questions and needs. Start learning about Sjogren’s in amounts that you can handle. Early on, many patients drive themselves a bit crazy trying to figure out how to cure this disease, or at how to get back to their old life. Some people do very well with treatments and/or lifestyle interventions, and can live a fairly normal quality of life. Others remain quite ill despite trying everything, often exhausting themselves even more in the process. Most land somewhere between the two.
My advice: Stop looking for the one big answer. Try things that make sense to you, at a pace that works for you. Lifestyle changes can help. So can medications. There is no one-size-fits-all approach that works. Sjogren's is complex; Sjogren's varies a lot among patients. Combining a variety of tools can add up to better quality of life. However, it can be overwhelming to try to address everything at once.
Pace yourself and prioritize
Try to address your most bothersome symptoms first, along with any concerns that the rheumatologist may have about your condition. While there are common themes among Sjogren’s patients, each person has a unique set of symptoms and priorities.
Take the time you need to find clinicians who can take care of your Sjogren’s needs. You may go through several clinicians before finding one who both understands Sjogren’s (or is willing to learn) and is a good fit for you. Some general communication strategies are provided in the Self-Advocacy for Diagnosis page.
You may need multiple visits with a rheumatologist early on to address each area of clinical concern. Your rheumatologist will also need to prioritize according to symptom severity and his or her expert opinion.
Understand that Sjogren’s requires ongoing attention. Needs will change over time. There is a learning curve, especially around which treatments and lifestyle measures will work best for you as an individual.
Take advantage of educational resources
Watching these introductory videos with friends and family can help counter the “Sjogren’s is mainly a nuisance dryness disease” misperception. These videos provide a brief but excellent summary of Sjogren’s and the patient experience.
Websites: The Sjogren's Foundation, www.sjogrens.org, offers a broad range of reliable, current information. The Foundation is advised by many dedicated Sjogren’s experts. Learn more about why I refer to the wide variety of Sjogren's Foundation resources here.
Sjogren’s Advocate (this website) focuses specifically on strategies for self- advocacy. It is not part of the Sjogren's Foundation. Learn more here.
Citations and Key Articles
Academic resources such as books and journal articles are frequently cited on this website.
Support groups are generally comprised of people living with the disease. Many patients are quite knowledgeable and often have great tips. Do check with your doctor and use your own best judgment whenever making medical decisions. Each patient is unique. One drug/ supplement/ diet/ complementary treatment may greatly benefit a subset of patients but have no benefit or even a negative impact on others.
Local and other support groups, in-person and online, can be especially useful for finding nearby Sjogren’s- savvy providers.