For the Newly Diagnosed
Because Sjogren’s is a complex disease, it requires a team of knowledgeable clinicians to provide optimal care. Creating a core health care team is an important priority for new patients. While currently there is no cure, 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 largely unfamiliar with Sjogren’s. There are numerous stories of patients who have had their symptoms downplayed, ignored or psychologized, both before and after diagnosis. Sadly, it is also common for patients to hear conflicting or incorrect information from their clinicians. A separate section will be created to provide strategies for countering common misperceptions.
Despite the fact that it is common, serious and multisystemic, little attention is given to Sjogren’s by medical training 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.
Letter to PCPs
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 involvement, 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.
Sjogren’s can be hard to diagnose: clinicians sometimes disagree on the diagnosis. The diagnosis section can help patients deal with this conundrum.
"Early diagnosis and high-quality professional 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."
The Sjogren’s Foundation: https://www.sjogrens.org/home/about-sjogrens/treatments
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.
Some clinical issues are important to address early on. Others can be addressed over time, depending on each person’s unique needs. To learn about the major areas of clinical concern, see Sjogren’s- Another look.
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 SSF members at www.sjogrens.org.
Introduction to core health team members
This section provides an overview: more details to follow!
Rheumatologists are the core specialists in charge of Sjogren’s care. Ideally the rheumatologist is the team leader to see 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 treat Sjogren’s patients, for a variety of reasons. Prior to 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, which is not always straightforward especially for the significant subset of patients who do not meet the Classification Criteria. In gray area situations, it can be very helpful for patients and PCPs to thoroughly review the diagnosis section of this website.
Look for disease mimics during the diagnosis process. Sjogren’s may have overlapping features with many other diseases, including rheumatoid arthritis, systemic lupus erythematosis, multiple sclerosis, hepatitis, IgG-4 related disease and others. Some patients diagnosed with fibromyalgia actually have undiagnosed Sjogren’s.
Perform screening and monitoring for other rheumatologic and autoimmune conditions that commonly co-occur with Sjogren’s.
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 PCP to see that this is done.
Provide treatment and management of General systemic features and Extraglandular Manifestations (EGM). EGM management is sometimes coordinated with a second specialist.
Many patients are offered no treatment for systemic symptoms, with the rheumatologist stating, based upon inadequate studies,“Plaquenil does not work,” or “There are no good treatments." 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. Clinicians treating Sjogren’s patients should be familiar with current CPGs.
Recommended listening for patients and clincicians: Sjogren’s National Patient Conference lectures about treatment available at https://www.sjogrens.org/ssfstore/audio-cds
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. Addresses wide range of issues, including lifestyle, social /emotional and other wellbeing concerns.
Communicate 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 co-morbidities such as osteoporosis, sinusitis, cardiovascular disease,etc. Because most PCPs are unaware of these comorbidities, education by patients can be helpful.
Provide referrals to rheumatologists and other specialists who are engaged and knowledgeable about Sjogren’s. The patient may be responsible for verifying that these specialists are in fact familiar with managing Sjogren’s.
Provide some direct Sjogren’s- related care as needed due to a general shortage of rheumatologists, or if local rheumatologists are unwilling or unable to provide comprehensive Sjogren’s care. In this situation, it is especially important that the PCP become familiar with the Clinical Practice Guidelines for systemic manifestations.
Ophthalmologist / Optometrist
Performs diagnostic tests such as Schirmer's test, ocular staining score (OSS), and other tests such as tear breakup time (TBUT). May order blood tests to screen for Sjogren’s, and occasionally diagnoses Sjogren’s based on clinical picture and tests.
Both professions may provide routine dry eye management, including ordering prescription medications/ drops. Both should 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.
Treatment of systemic eye complications such as uveitis and scleritis.These conditions are not related to dryness. They are rare, but serious systemic eye complications of Sjogren’s that require immediate attention from an ophthalmologist.
Ophthalmologist vs Optometrist
An Ophthalmologist is an MD eye specialist. While many optometrists treat dry eyes, an ophthalmologist should manage anyone with visual impairment from Sjogren’s dry eye disease, corneal erosions or other severe dry eye manifestations, Scleral lenses are often fitted and managed by specially trained optometrists.
Performs 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.
Examines entire oral region at every checkup: palpates salivary glands, face and neck for swelling and masses in addition to dental exam.
Provides dental caries prevention, screening and treatment. Frequency of preventive visits depends on the level of dryness and decay. Many patients require extensive dental care.
Becomes familiar with Clinical Practice Guidelines for Oral Management
A separate page will address gynecologic issues in Sjogren’s patients An excellent CD lecture about GYN issues from the 2016 National Patient Conference is at https://www.sjogrens.org/ssfstore/audio-cds
Sjogren’s can impact any part of the body. Examples of common specialty referrals include neurology, dermatology, pulmonology (lung doctor), ENT, GI and endocrinology.
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.
My advice: Stop looking for the one big answer. Try things that make sense to you, at a pace that works for you. Many lifestyle issues can help. So can medications. 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 of each type you need before you find 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 get to each area of clinical concern. Your rheumatologist will also need to prioritize and pace 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
A great place to start: View the Exploring Sjogren's videos, starting with Episodes 1 and 2.
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 (aka SSF) www.sjogrens.org, offers a broad range of reliable, current information. The Foundation is advised by many dedicated Sjogren’s experts. See blog post 2-28-19.
Sjogren’s Advocate (this website) focuses specifically on strategies for self- advocacy. See blog post 1-22-19 to learn more.
Citations and Key Articles
Academic resources such as books and journal articles are frequently cited on this website. Links to each See blog post 4-25-19 to learn about how citations are used. See blog post 10-23-19 for more about Key Articles vs. Citations. The contents of these two documents overlap, but they serve different purposes.
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 support groups, in person and online, can be especially useful for finding nearby Sjogren’s savvy providers and other local resources. See https://www.sjogrens.org/home/get-connected/support-groups.