Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Why doesn’t my doctor understand Sjögren’s?

Posted on Mon, Jan 30, 2017

Why Doesn't my doctor understand Sjogren's .pngLike many Sjögren’s patients, I find it disheartening that most doctors remain unfamiliar with the disease. First diagnosed with dry eyes and corneal abrasions at age 18, I had no idea that something bigger was brewing. Over the next three decades, not one of my multiple eye specialists asked about other symptoms that could have led to a timely Sjögren’s diagnosis. By my thirties, I had a classic Sjögren’s picture of dry eyes and mouth, flu-like fatigue, multiple gastrointestinal problems, chronic sinusitis and widespread musculoskeletal pain. Yet no one put the pieces of the puzzle together, and it wasn’t until I experienced incapacitating symptoms that Sjögren’s was even considered.

Lack of provider awareness would be understandable if Sjögren’s was a rare disease. But Sjögren’s is extremely common, affecting approximately 1% of the US population, mostly adult women.1 This is similar to the number of women living with breast cancer.2 I like to call Sjögren’s “the most common disease no one has ever heard of.”

Sarah Schafer.pngSjögren’s can be debilitating. Despite a high disease burden and increased rates of infection and heart disease, Sjögren’s still tends to be “missed and dismissed.” While direct complications such as lymphoma and organ involvement are often successfully treated, these conditions lead to death in approximately 10% of Sjögren’s patients.3,4

After years of advocating for my own care, I am now using my unique vantage point as a physician-patient to teach primary care providers (PCPs) about Sjögren’s. From discussions with recent medical school graduates, I have discovered that Sjögren’s continues to be glossed over as a mild disease, mostly about managing dryness. Medical students are rarely taught these basics: Sjögren’s is common, serious and always systemic.

The following ten points help to explain why “Sjögren’s neglect” persists in medicine. By understanding what is behind the problem, you can better advocate for yourself as a patient.

  1. Sjögren’s is a complicated disease. It takes a high index of suspicion to recognize that scattered and mostly invisible symptoms may all be related. Most Sjögren’s patients experience the triad of pain, fatigue and dryness. While only the dryness can be measured, doctors must take patient reports of pain and fatigue seriously in order to see the bigger picture. 
  1. Sicca (dryness) symptoms are often overlooked in the primary care setting. Sicca is often the best clue to diagnosis. Yet many patients do not mention dryness to their providers, thinking it unimportant or unrelated to their other symptoms. Physicians and patients alike may not recognize that burning, gritty eyes or difficulty swallowing food without liquids are dryness symptoms. 
  1. Sjögren’s patients usually look well, even when they are quite ill. There are no blood tests that correlate with the severity of the disease. This makes it easy for providers to write off patients as complaining or malingering.
  1. Misdiagnosis is common. Symptoms often overlap with more familiar conditions such as depression, fibromyalgia, hypothyroidism and irritable bowel syndrome. Menopause often unmasks Sjögren’s symptoms that have been brewing for years. While these conditions may co-occur with Sjögren’s, PCPs often fail to consider the possibility of Sjögren’s as the major culprit.
  1. Delayed diagnosis. The typical Sjögren’s patient has a delay of nearly three years until diagnosis. True delays are even longer: many patients describe decades of symptoms before things got bad enough to seek diagnosis. Clearly this needs to change. PCPs need to be taught how to recognize Sjögren’s and take the first steps to diagnosis.
  1. Diagnosis can be difficult. Better tests are needed. There is no one test or group of tests that diagnoses Sjögren’s early and accurately. Many patients who do not have Sjögren’s antibodies (“seronegative”) are told they do not have Sjögren’s. Yet 30% of Sjögren’s patients are in this seronegative group. These patients typically experience even greater delays in diagnosis, because the confirming minor salivary gland biopsy is not always done, and it may take years to turn positive. Normal blood tests do not rule out Sjögren’s!
  2. Patients with serious organ system complications are often misclassified as other autoimmune diseases. This happens largely due to the ongoing misperception of Sjögren’s as a mild disease. These patients may never get properly diagnosed, perpetuating the “Sjögren’s is mild” mythology.
  1. Research neglect. Clinical studies of Sjögren’s lag far behind other connective tissue diseases. While this is changing, this lack of research keeps Sjögren’s under the radar of awareness as an important health issue.  
  1. Until 2016, no standard of care existed for Sjögren’s management. Doctors tend to be highly motivated to practice medicine within the standard of practice in their community. The recently published clinical practice guidelines (CPGs) will be a good first step in providing consistent treatment standards for rheumatologists, ophthalmologists and dentists.
  1. Rheumatologists are not always up to date on Sjögren’s management. There are still some rheumatologists- the very specialists who treat Sjögren’s- who do not consider Sjögren’s to be serious enough to warrant treatment. There are too many present day stories of patients with debilitating fatigue and pain who are refused treatment because the rheumatologist told them that “their Sjögren’s was not bad enough.” Hopefully the CPGs will provide incentive for these rheumatologists to treat Sjögren’s patients sooner. Most Sjögren’s experts with extensive clinical experience believe that treatment slows progression and prevents serious complications.  

As a Sjögren’s patient, what can you do?

  1. Make sure you are being followed by a rheumatologist, ophthalmologist and dentist who are familiar with Sjögren’s and its complications. Take a copy of the new clinical practice guidelines to your next appointment.

  2. Understand that PCPs are unlikely to be well educated about Sjögren’s, due to the many reasons listed above. However, if they are caring for you, it is their job to learn about Sjögren’s. I encourage you to refer your physicians and their office team to the SSF and sjogrens.org. The SSF will provide medical professionals with free materials to help them diagnose and manage Sjögren’s.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

Click Here to Receive our Newsletter  by Becoming an SSF Member

REFERENCES:

  1. Helmick CG, Felson DT, Lawrence RC, et al. National Arthritis Data Workgroup. Estimates of prevalence of arthritis and other rheumatic conditions in the United States, Part I. Arthritis Rheum. 2008;58:15-25
  2. http://seer.cancer.gov/statfacts/html/breast.htm
  3. Brito-Zeron P, Ramos-Casals M, et al. Predicting adverse outcomes in primary Sjögren’s syndrome: identification of prognostic factors. Rheumatology 2007;46:1359-136
  4. Brito-Zeron, P, Ramos-Casals M. Systemic Sjögren’s: More than a sicca disease. http://www.the-rheumatologist.org/article/systemic-sjogrens-more-than-a-sicca-disease

 

Topics: Diagnosing Sjogren's, Sjogren's, Treatment, coping with sjogren's, Clinical Practice Guidelines

Ask the Expert: Sjögren’s & Lymphoma

Posted on Fri, Oct 30, 2015

Question_and_Answer "I know as a patient with Sjögren’s I am at a higher risk for Lymphoma, is there anything my dentist could be on the lookout for to help catch it early?"

 This is true; patients with Sjögren’s have an increased risk for developing lymphoma. Most commonly, the lymphoma associated with Sjögren’s is low-grade non-Hodgkin’s B-cell in nature. Visiting a dentist regularly, at least twice a year, is essential, as early detection may affect treatment.

What does lymphoma in the mouth look like?

  • The tumors associated with non-Hodgkin’s lymphoma usually present as non-tender, slow growing masses that may arise in several areas of the body including the neck or the oral cavity. In the mouth, lymphoma presents as a diffuse, non-tender swelling that may be described as boggy. Occurring with higher frequently in the gingiva, posterior (closer to the throat) hard palate and buccal vestibule (the area between the gums, teeth and cheek), these masses are often red or blue-purple in color.

So what does this mean?

As stated earlier, visiting a dentist regularly and routinely is extremely important for early detection. Additionally, when visiting your dentist, make sure to tell him/her of your history of Sjögren’s. It is important that your dentist conducts a thorough and comprehensive head and neck examination, which includes palpating the cervical lymph nodes (lymph nodes in your neck) as well as lifting the tongue and assessing the lateral borders (teeth sides of the tongue), the hard palate, floor of the mouth, buccal vestibules, soft palate, gingiva and the remaining soft tissues in the oral cavity.

Is there anything I can look out for?

Yes. It is important to visit your physician if you notice a swelling in your neck that persists for more than two weeks. You should also visit your dentist if you notice a swelling in your mouth that remains for more than two weeks. As a rule of thumb, if you notice any lesions in your mouth that remain for more than two weeks, it is recommended that you visit your dentist.

by Lauren Levi, DMD, Dental Oncologist 

This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.

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Topics: Diagnosing Sjogren's, Dry Mouth, Sjogren's, Treatment, Swelling in the neck, Lymphoma, Sweling in the mouth

World Sjogren's Day is July 23!

Posted on Wed, Jul 15, 2015

SSF_World_Sjogrens_DayHappy Birthday Dr. Sjögren's!

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren's in 1933, which has helped all patients find answers to their health questions.

This July 23rd, the Sjögren's Syndrome Foundation (SSF) joins with other Sjögren's organizations around the world to celebrate the 6th annual World Sjögren's Day and what would have been Dr. Sjögren's 116th birthday. World Sjögren's Day also allows us to recognize advancements made in Sjögren's this past year and the incredible progress the SSF has made on behalf of Sjögren's patients.

henrik_sjogren1-1

Sjögren’s (SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands. Four primary symptoms include fatigue, joint pain, dry eye and dry mouth, but Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system.

World Sjögren's Day creates an ideal opportunity for you to talk about Sjögren's with the people in your life and provide much needed awareness for this common yet little known disease. By sharing your story, you are helping share the message that Sjögren's is a serious and life-altering disease and it deserves to be recognized.

Together we can transform the future of Sjögren's!
Learn more about World Sjögren's Day   & how to create a personal fundraising page!

Topics: Diagnosing Sjogren's, World Sjogren's Day, Sjogren's

Ask the SSF Staff: Treating Primary vs. Secondary Sjögren’s

Posted on Wed, Dec 10, 2014

describe the imagedescribe the image Should I treat my Sjögren’s differently if I have primary vs secondary Sjögren’s? 

Thedescribe the image terms "Primary and "Secondary" were first used in the 1960s and were devised by researchers who wanted to distinguish between those Sjögren’s patients whose disease was not "complicated" by other major rheumatic or autoimmune disorders. When carrying out research, the investigators wanted to make sure they were looking at purely Sjögren’s  patients and not looking at outcomes for patients who had, for example, both Sjögren’s  and rheumatoid arthritis (RA). They thought that could confuse clinical trials looking at how well a specific therapy worked.  As such things usually happen, though, the terms began to carry over to general clinical diagnosis and medical discussions and thought patterns, and that's where everything became complicated and not helpful for patients and not even helpful for the clinicians treating them. It didn't always make a major difference for the research, either.

So, first, what do the terms mean? "Primary" has been defined as a Sjögren’s patient who does not have another major rheumatic and/or autoimmune disease and "Secondary" as a Sjögren’s patient who does. But as you can imagine, it's not always simple or easily apparent. If a patient has another major rheumatic, autoimmune disease such as lupus, RA, scleroderma or the autoimmune disease multiple sclerosis, they would have traditionally been categorized as have "Secondary Sjögren’s." The term "Secondary" has not been applied to the prevalent autoimmune thyroid diseases, however, which are common in Sjögren’s, and so the terms are somewhat tricky.

Also, investigators have confronted a dilemma when a patient has had Sjögren’s for many years and been labeled as "Primary" and then is diagnosed with another major rheumatic and/or autoimmune disease and automatically being re-labeled as "Secondary Sjögren’s."  And to complicate matters more, some clinicians have now started saying their patient has "Primary Sjögren’s” and "Secondary lupus"(for example) while others undiagnosed the patient from having "Primary Sjögren’s” and changed the diagnosis to "Secondary Sjögren’s." How confusing!

Does it really matter? NO - It certainly doesn't matter to the patient or the clinician treating a patient. It doesn't alter treatment, since treatment for these diseases is based largely on the clinical manifestations and symptoms. All patients should be treated on a case-by-case basis. 

Does the label mean your disease is more or less severe? ABSOLUTELY NOT.  If someone has labeled you as having "Secondary Sjögren’s," it does not mean that your Sjögren’s is less severe or secondary in importance to the other condition. It also doesn't mean that symptoms that were labeled as Sjögren’s symptoms previously are now symptoms of the other disease. Autoimmune diseases often overlap, and sometimes it's difficult to tell if a symptom is Sjögren’s or, say, lupus. In fact, Sjögren’s is the most frequent disorder that occurs in conjunction with other autoimmune and rheumatic diseases, so, again, your signs and symptoms must guide the treatment.

Does the label make a difference as to whether patients are monitored for specific complications or not? NO. Again, your management and treatment should depend on your manifestations of autoimmune disease. You might be labeled as having lupus AND Sjögren’s or rheumatoid arthritis AND Sjögren’s, and then your symptoms and diseases should be managed according to your specific case and with complications specific to each in mind.  

Traditionally, it has mattered to an investigator running clinical trials, but even that is now being called into question. First, diagnosis and pigeon-holing these diseases is not always easy or an exact science. Second, investigators didn't mind if patients with RA or lupus who entered clinical trials also had Sjögren’s  and thought it did not muddy the results of trying a new therapeutic. Why? Because, again, like clinical treatment, the trials were primarily targeted toward clinical manifestations - for example, joint pain, which can occur in several rheumatic diseases including Sjögren’s. While a few manifestations might be distinctive of one disease versus another, such as the joint damage that occurs only in rheumatoid arthritis, the results still were based on the manifestation.

The Sjögren’s Syndrome Foundation is trying to move the medical and scientific community away from these terms, because they usually are NOT helpful or necessary. In fact, they are most often used out of habit, and while we recognize that habits can be hard to change and it can take a long time for a majority to start using different terminology, the SSF is on a mission to accomplish this. Simply put, someone either has Sjögren’s or does not have Sjögren’s. Having another identifiable disease doesn't change the fact that the patient has Sjögren’s, and a somewhat arbitrary decision about which additional diseases and conditions might change a patient between "Primary" and "Secondary" no longer makes sense.
 
-Katherine Hammitt, SSF Vice President of Research

This article was first published in The Moisture Seekers, SSF's member newsletter.

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Topics: Diagnosing Sjogren's, Sicca, Sjogren's, Joint Pain, Treatment, Advocacy, Primary v Secondary Sjogrens

Ask the Doctor: Diagnosing Men & Children with Sjogren’s

Posted on Tue, Sep 30, 2014

Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s?

My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. AJ newThe Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.

I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work.
-Frederick B. Vivino, MD, MS, FACR

This "Question & Answers" article was first printed in the The Moisture Seeker, SSF's patient newsletter for members.

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Diagnosing Sjogren's, Symptoms, Sjogren's, 50in5: Breakthrough Goal, Men with Sjogren's, Children with Sjogren's

Sjogren's Vs. Sicca Syndrome

Posted on Thu, Aug 21, 2014

Sicca is a word derived from the Latin siccus, meaning “dry.” Dryness of the exocrine glands, particularly the eyes and mouth, is referred to as “sicca syndrome” or “sicca complex” when there is no evidence of autoimmune disease present.  While sicca symptoms occur in the vast majority of Sjögren’s patients, not everyone with these symptoms has Sjögren’s. Because of this, it is important to establish an autoimmune cause for the dryness.  Sometimes other causes may be found, such as radiation therapy to the head, certain medications, or Hepatitis C or HIV infections. If no cause is found, the patient should be followed carefully for possible Sjögren’s because it sometimes takes years for the diagnosis to become clear. 

tms cover 2014 April

Dryness from Sjögren’s may affect any organ in the body that secretes moisture. In addition to changing the quantity and quality of saliva and tears, dryness may manifest in the airways, nasal passages, sinuses, throat, skin, and in women, the vagina. Some Sjögren’s patients initially present with recurrent sinus infections, severe vaginal dryness, chronic dry cough, and so on. All types of specialists, not just eye doctors and dentists, need to keep Sjögren’s in mind as a diagnostic possibility, especially when dryness is severe, persistent, or accompanied by systemic symptoms such as fatigue and widespread muscle and joint pain. Dryness can be quite serious, causing dental disease, eye pain and even visual impairment.  However, these issues should not detract from the often missed point that Sjögren’s is much more than sicca syndrome.  Sjögren’s is a serious systemic autoimmune disease that can affect almost any organ in the body. 

-Sarah Schafer, MD

This information was first printed in the April issue of The Moisture Seeker, SSF's patient newsletter for members. 

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Topics: Diagnosing Sjogren's, Dry Nose, Sinuses, Sicca, Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Fatigue, Vaginal Dryness, Chronic Cough

March 30th is National Doctor's Day

Posted on Wed, Mar 13, 2013

This year, show your doctors your appreciation by helping them stay updated on the latest Sjögren's information!
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Purchase "The Sjögren's Book, Fourth Edition" for a physician (or physicians) in your life and the SSF will mail the book directly to them with a special card letting them know that it was purchased by you in honor of National Doctor's Day!

With this purchase, the SSF will give your physician a complimentary subscription to our professional newsletter, Sjögren's Quarterly, as well as brochures for their office.

With Sjögren's Awareness Month right around the corner in April, what
better way to show your doctor appreciation than informing their entire
staff about Sjögren's and raising awareness in your community!

Click Here for the SSF National Doctor's Day- I Appreciate My Doctor Order Form

Cost= $32.00

How to order:

  • Call 1-800-475-6473
  • Fax the form to 301-530-4415
  • Mail the form to the SSF Office: 6707 Democracy Blvd., STE 325 Bethesda, MD 20817


Topics: Diagnosing Sjogren's, National Doctors Day, Sjogren's

When I was diagnosed with Sjogren's, my first thought was…

Posted on Tue, Jan 29, 2013

"What the heck is that?"
     -Iris

"Well, that makes a lot of sense but now what?"
     -Shelly

"I'm a man, I cannot have this."
      -Joe

“What? That’s all I need on top of Fibromyalgia (FMS).”
      -Donna

“I told you so!”
       -Sarah

"I remember seeing that disease in nursing school a long time ago."
      -Beverly

"Thank God for the diagnosis!"
      -Renee

"That explains a lot"
     -Karen

“WHAT IS THAT?”
      -Nancy

“How is this going to affect my life?”
      -Melaca

“I have what?”
      -Abby

 

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Faces of Sjögren's- You are not alone!

As the Foundation announced in the January 2013 issue of The Moisture Seekers, we've added a new section to our website: Faces of Sjögren's.

With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjögren’s by 50% in 5 years” we are also hoping to change how Sjögren’s is understood.

On this new web page, patients share their journey with Sjögren's starting from their first thought after being diagnosed to where they are currently. Now that you've read their first thought, find out what happens next and read their full story on our website.

 Click Here to see all of our Faces of Sjögren's stories

 

Topics: Diagnosing Sjogren's, Sjogren's, 50in5: Breakthrough Goal

Breaking the Barriers: 4.7

Posted on Fri, Nov 23, 2012

describe the imageThe Sjögren’s Syndrome Foundation’s 5-Year Breakthrough Goal:“To shorten the time to diagnose Sjögren’s by 50% in 5 years,” is the largest initiative that the SSF has ever undertaken. This is why we are working with an outside marketing research firm to help us gather information needed to reach our goal, track our progress and tell us how long it currently is taking patients to be diagnosed with Sjögren’s.

This summer, the SSF and our marketing research firm surveyed newly diagnosed Sjögren’s patients from 2011, and of those patients surveyed, it was determined that it currently takes patients on average 4.7 years to be diagnosed with Sjögren’s. While 4.7 years is a great initial improvement from all past studies, we probably all can agree that it is still too long to wait for an accurate diagnosis!

In addition to the length of time to reach diagnosis, the SSF also was able to gather valuable data about the average age of those being diagnosed, which medical professionals are diagnosing Sjögren’s, which symptoms are causing patients to seek a diagnosis and what symptoms patients are currently experiencing. This new information will help the SSF in highlighting gaps in patients’ medical care as well as where we may be able to capture potential patients before they suffer for nearly 5 years. We then can direct our marketing efforts toward those symptoms and medical professionals.

So, now, the SSF can be proud that we have been able to decrease the time for diagnosis from nearly 8 years back in 2007 to now 4.7 years. This baseline will give us our starting point to reach our goal of shortening the time to diagnose Sjögren’s by 50% over the next 5 years. We hope that by 2017, we can say that it only takes a little over 2 years to obtain a proper diagnosis!

We can do this – but we still need more help! We thank those who have been participating in our awareness initiatives and coming out to fundraising events as well as those who support the SSF. However, there are more ways to get connected and we hope you will all step up and help us. Learn more about the SSF and how you can assist us by visiting www.sjogrens.org or calling the SSF office at 800-475-6473.

*** This was first published in the October issue of The Moisture Seekers, our patient newsletter for SSF members.

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Topics: Diagnosing Sjogren's, Symptoms, Sjogren's

Sjogren’s and Preparing for a New Doctor Visit

Posted on Fri, Aug 31, 2012

 describe the imageWhen meeting a physician for the first time, it’s imperative to come prepared. Prior to my first visit, I write out my objectives for that appointment. My initial goals are often quite simple. Primarily, I want to determine if a successful working relationship with the practitioner can be achieved. Medical care of a chronic illness, in my opinion, is a journey that requires a trusting partnership. Unfortunately, many primary care physicians have had little experience with Sjögren’s. Therefore, it is part of my responsibility to provide them with updated information on our illness.

Listening carefully to answers to questions (such as the two listed below) will provide useful information for making this decision.

  • How many patients have you treated with Sjögren’s?
  • Are you interested in receiving professional educational information regarding Sjögren’s treatment, research and management?

If a practitioner is not open to learning about Sjögren’s, then I know immediately that this relationship isn’t a good fit. While this can be discouraging to realize, it is far more challenging to try to work with a physician who is not willing to learn about our complex syndrome.

Secondly, before an appointment, I gather three pieces of information:

  • Copies of my last few lab and test results.
  • A typed list of my current medications/supplements with dosages.
  • A typed list of significant medical conditions/ injuries with corresponding dates and treatments (the last two are kept as easily updated documents on my computer).

Providing my new practitioner with these lists helps expedite my appointment and serves as an indicator that I am serious about taking an active role in managing my health.

Depending on the situation, I also have brought a copy of The Sjögren’s Syndrome Handbook to give to the physician along with a copy of The Sjögren’s Quarterly which I offer to have sent to them. I explain that a great deal more has been learned about Sjögren’s in the last 5-10 years, including the fact that many patients experience more systemic disease involvement than previously understood (many doctors still only relate dry eyes and dry mouth with Sjögren’s). I also inform them that while significant medical ground has been gained, it still takes, on average, seven years to diagnose Sjögren’s. This is a mind-numbing statistic considering it is the second-most-common autoimmune disease, affecting nearly four million Americans.

Bringing a medical history binder to my appointments also has been extremely helpful. I use a large three-ring binder divided by medical specialty (including copies of office visit records), lab results, testing results, new treatment information, medication records, and notes. Because my binder is ridiculously thick, I keep it in my tote bag, out of sight, until I need to reference something. Several times I was able to provide missing lab results which provided the basis for immediate changes in treatment.

The last matter of business for my new doctor visit is the establishment of clear guidelines regarding medical management and communication procedures.

Understanding medical management means clarifying what things I will see this doctor for and what conditions will predicate a visit to a different member of my “medical team.” I also work with my practitioner to determine who will be the “chief navigator of my ship.” This may sound simple as I imagine it is widely understood that a rheumatologist would always function as a Sjögren’s patient’s main physician. However, depending on a number of factors, including insurance coverage, appointment availability, geography and perhaps even a practitioner’s interest in managing a patient with Sjögren’s, that  question can have a myriad of answers. I also discuss how various physicians communicate my care to one another, so that my main physician will have a complete picture of my health. Furthermore, understanding the new physician’s office procedures for sick or same-day visits, medication refills and how often I should be seen for follow-up care are good questions to have answered on your first visit.

Establishing a successful relationship with a physician is like establishing a relationship with a friend. It requires understanding, patience, effective communication and a sense of humor.

By Sara Sise, Sjögren’s patient and past Board of Directors Member

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Topics: Diagnosing Sjogren's, Sjogren's, Treatment

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