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Sjogren’s Syndrome Comprehensive Introduction

Sjogren's Syndrome affects the whole bodySjogren’s syndrome is a chronic autoimmune disorder that primarily affects the exocrine glands, particularly those that produce tears and saliva. It is named after Dr. Henrik Sjögren, who first described the syndrome in 1933. Understanding Sjogren’s Syndrome is important for anyone diagnoses with the syndrome or experiencing the symptoms.

Characteristics of Sjogren’s Syndrome

This condition is characterized by the body’s immune system mistakenly attacking its own moisture-producing glands, leading to dryness of the eyes and mouth.

Symptoms:

Dry eyes: Patients may experience a persistent gritty or burning sensation in the eyes, redness, sensitivity to light, and blurred vision.
Dry mouth: Individuals may have difficulty swallowing, speaking, or tasting food. They may also develop frequent dental cavities and oral infections.
Fatigue: Many people with Sjogren’s syndrome experience persistent fatigue that is not relieved by rest.
Joint and muscle pain: Joint pain, swelling, and stiffness, similar to symptoms of arthritis, can occur.
Dry skin and rashes: Some individuals may have dry skin, skin rashes, or the sensation of crawling or itching on the skin.
Vaginal dryness: Women may experience vaginal dryness, discomfort during sexual intercourse, and an increased susceptibility to vaginal infections.
Salivary gland swelling: In some cases, the salivary glands located around the jaw and in the mouth may become swollen and tender.

Causes and Diagnosis of Sjogren’s Syndrome:

Causes

Doctors do not know the exact cause of Sjogren’s syndrome is unknown.  They believe it to be a condition influenced by genetic, hormonal, and environmental factors.  Sjogren’s Syndrome falls into the autoimmune disorder group.  The body’s immune system mistakenly targets and attacks its own moisture-producing glands, leading to their dysfunction.

Diagnosis:

Diagnosing Sjogren’s syndrome can be challenging due to its varied and overlapping symptoms. A healthcare professional will typically conduct a thorough medical history review, physical examination, and order specific tests, including:

Blood tests: These may include tests for antibodies commonly associated with Sjogren’s syndrome, such as anti-SSA (Ro) and anti-SSB (La) antibodies.
Eye examination: An eye specialist (ophthalmologist) may conduct tests to evaluate tear production and assess the health of the eyes.
Salivary gland biopsy: A small sample of salivary gland tissue may be removed and examined to check for characteristic abnormalities.

Treatment and Relief Of Sjogren’s Syndrome:

Treatment of Sjogren’s Syndrome

The treatment for Sjogren’s syndrome aims to relieve symptoms, prevent complications, and manage any underlying autoimmune inflammation. It typically involves a multidisciplinary approach, and the specific treatment plan may vary depending on the severity of symptoms.

Common strategies for Symptom Relief:

Symptomatic relief: Artificial tears, lubricating eye gels, and saliva substitutes can be used to alleviate dryness of the eyes and mouth.
Medications: Nonsteroidal anti-inflammatory drugs (NSAIDs) may be prescribed for joint and muscle pain. Immunosuppressive drugs or corticosteroids might be used in more severe cases to suppress the immune system’s overactivity.
Moisture preservation: Measures such as humidifiers, avoiding dry environments, and staying hydrated can help maintain moisture levels.
Dental care: Frequent dental check-ups and good oral hygiene practices are crucial to prevent dental decay and infections.
Eye protection: Wearing sunglasses and using protective eyewear in dry or windy conditions can protect the eyes from further damage.
Patient education and support: Counseling and support groups can provide valuable information, emotional support, and coping strategies for individuals living with Sjogren’s syndrome.

It’s important for individuals with Sjogren’s syndrome to regularly follow up with their healthcare provider to monitor symptoms, manage complications, and adjust treatment as needed.  It is also important to understand this syndrome whether diagnoses or with symptoms.  The best way to do that is to read everything available.


 

Changing Primary Care Physicians

Building a good doctor/patient relationship takes time.  This is particularly true when the doctor is a specialist.   My primary care doctor suggested that I see a specialist because of my symptoms.  He felt that a Rheumatologist would be better able to treat me.  I trusted my doctor so I went to see the specialist he recommended.  Although, I was not changing primary care physicians, I was nervous about going to see another doctor.  The word rheumatologist itself was intimidating.

Changing Primary care physicians is not easy

Changing Primary Care Physicians because of Sjogren’s.

Changing primary care physicians started here

I feel comfortable at my family doctor’s office.

My family doctor knew about Sjogren’s Syndrome, but referred me to a specialist for ongoing care.  For me, referrals to specialists are always a little worrying.  Basically, what I have is too complicated for my doctor.  This makes me worry.  General practitioners can diagnose most everything, but their practice is to broad to treat everything.  When I think about this, I do feel less worried.  My doctor takes lots of things into consideration when he makes a referral.

  • My medical condition
  • Location of the referral
  • Reputation of the referral
  • Timing of the referral
  • Ease of consultation with the referral
  • Medical Insurance coverage

My doctor is really putting his reputation on the line when he refers me to a specialist.  His referral is based on his knowledge of the specialist.  For this reason, I am confident that the specialist is good.  But since I will be seeing a lot of that doctor, I am still worried about all that goes into changing primary care physicians.

Define Doctor Patient Relationship

In article on Sjogren’s Syndrome, NewYorkTimes.com states, “The manifestations of Sjogren’s are numerous and doctors generally are not familiar with them, which results in huge delays in diagnosis.”  How do you define doctor patient relationship?  Whatever definition you use, a referral means building a new working relationship with a doctor.  I have to go over all the personal information that has been shared with my family doctor.

changing primary care physicians can be intimidatingBecause the symptoms of Sjogren’s are not really dramatic, it took me awhile to realize that they might be related.  Now, with another doctor, I am going to have to explain from beginning until the present how the symptoms developed.

We have tried one treatment after another.  The special will want a detailed description of each treatment including my assessment of how they worked.  Then there’s the list of medications I take.  Rational, dosage and affect will be discussed in great detail.  Almost everyone has experience an initial meeting with a new doctor.  This one is particularly worrisome for me.  Because opinions on cause, treatment and severity of Sjogren’s vary so much, I am hoping that the Rheumatologist doesn’t suggest a completely new treatment.

Same Day Doctors Appointment

My experience with doctors related to Sjogren’s Syndrome seems to be typical.  I see doctors from dentists to dermatologists for treat of my symptoms.  My local rheumatologist retired.  She had treated me for a couple of years through my original referral.  She recommended that I go to the Stanford Rheumatology Clinic.  My family doctor gave me a short list of rheumatologists to research.  With so many doctor appointments and work, I try to schedule multiple appointments on one day.  A Stanford Clinic appointment would require a full day of travel and appointments. I would miss work.  So, I did my research before making a decision about another rheumatologist.  I don’t usually pay much attention to online reviews, but i did read a few in making this decision.  I had 5 things that I compared as I made my decision.

  • Location – Because of work, this was a primary consideration.  I did not want to have to drive a long way.
  • Reputation – This meant looking at reviews and relying on them.
  • Availability – I called each office to ask if they were taking new patients.
  • Communication –  When I called, I asked if the doctor could be reached by email with questions.
  • My Doctor’s Opinion – This was the deciding factor for me.

I Made My Choice

changing primary care physicians brought me here

When I realized that same day doctor appointments weren’t going to be possible, I decided on the Stanford Clinic.  I have not regretted that choice.  It turns out that the drive can be part of a nice day off work.  The clinic is efficient and on time.  The doctor is thorough, pleasant and easy to communicate with anytime through email.  Not only that, the Stanford cafeteria serves fantastic meals.  My appointments are every 6 month, but I can ask questions or set up an interim appointment any time.  I hope I don’t have to find another rheumatologist anytime soon.

Visits to the Stanford Rheumatology Clinic are for other blogs.  I wanted to write today to let you know that the frustration, embarrassment, worry about changing primary care physicians is normal particularly with something as personal as Sjogren’s Syndrome.  It would help others and me if you shared your thoughts in the space below.

This site offers non-medical opinions about life with Sjogren’s Syndrome.  Images are clickable links to more information or other websites.  This site is affiliated with Amazon.com and other companies and may receive a commission if items are purchased through this site.  DiagnosisSjogren’s.com accepts no payments.  Each  company is responsible for their shipping and quality control of their products.  

 

 

 

 

 

 

 

Dry Mouth Sjogren Syndrome – Chronic Irritation

Sjogren’s Syndrome has a variety of symptoms.  At first, they seemed minor to me.  But, the combined affect was profound. Dry mouth sjogren syndrome affected my work.  It disrupted my social life. It eroded my confidence.

Click on any image, link or banner for more information.

Dry Mouth

picture of early dry mouth provided by mollysfund.org

Dry mouth is a common problem. Many things can cause dry mouth.

Excessive use of alcohol

Medication Side Affects

Excessive Exercise

Medical Treatments

Medical Conditions

Food Allergies

The Environment

Weather

The condition can be frequent but temporary.  For me, it was chronic.  I tried treating my dry mouth with a drink.  I used gum to stimulate saliva. Chronic dry mouth is quite different.  I needed to apply moisture continuously.

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Contact Lenses – Dry Eyes – Treatment

My rheumatologist suggested a “shot gun” approach to dealing with my symptoms. He suggested mouthwash and ointments for my dry mouth.  As well, he recommended short naps for my fatigue.  Finally, he suggested cold compresses and drops for my dry eyes. But he never suggested contact lenses. Everyone reminded me that the impact of my symptoms could change. As a result, he ask, “Right now, what affects you most?”

this eye needs contact lenses

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Journey Continued- Medical Appointments

Lots of Medical Appointments

Once I received a diagnosis, I needed a treatment plan.  This began a long series of medical appointments.  My journey continued.Persistence is key to dealing with Sjogren’s Syndrome.  Treatment is different for each person.  This means lots of appointments. As symptoms change, treatment changes.  Dry mouth may improve or get worse.  So treatment changes.

Be Organized

Your doctor (s) will have test results.  Specialists will record information based on interviews and observations.  You are the only source of information about your health, yours symptoms and treatment effectiveness.

  • Log treatment applications.Keep a journal of the journey.
  • Note medication side affects.
  • Note changes in symptoms.
  • Make notes on appointments.
  • Keep a calendar for appointments and health events.
  • Maintain a contact list of all doctors.
  • Keep a Sjogren’s journal.
  • Keep a list of your questions.

 Ask Questions

Doctors ask questions during appointments.  They also offer explanations for symptoms, choice of medication and ordering of tests.  You should understand all that information.  If you don’t understand something, ask.  Ask the questions on your list during each appointment.

There is nothing wrong with saying, “I don’t understand. Please explain what you just said?” It can be helpful to have a spouse, relative or friend attend appointments with you.  Both of you will hear the same thing from the doctor.  Often, you will have two different interpretations.

 My Journey Continues

My journey continues with appointments.  I see my family, my optomologist and dentist regularly.   I have seen a hemotalogist and a GI specialist.  Appointments can be difficult to juggle.  They are all important.

If it seems that you have a lot of symptom related appointments, its because you do.

  •  Be sure to attend each appointment.
  • Prepare  for  each appointment.
  • Understand what doctors tell you.
  • Report how you are feeling honestly and accurately.
  • Follow all the doctors’ recommendations.

I realize that my journey continues.  There is no cure for Sjogren’s Syndrome.  Your doctors will work to treat your symptoms.  Treatment will make things easier.  The goal is for limit the affect of Sjogren’s in you life.

Share your thoughts in the comment section below.  Are your symptoms controlled?  Do you have lots of medical appointments?

This site offers non-medical opinions about life with Sjogren’s Syndrome.  Images are clickable links to more information or other websites.  This site is affiliated with Amazon.com and other companies and may receive a commission if items are purchased through this site.  DiagnosisSjogren’s.com accepts no payments.  Each  company is responsible for their shipping and quality control of their products.  

 

 

 

 

 

Journey Beginning – Reviewing Symptoms

The journey beginning with identifying symptoms of  Sjogren’s Disease has been long.

My Journey Beginning with Symptoms

My Symptoms

My symptoms didn’t seem connected at first.  Sjogren’s is not that well known.  There are so many symptoms,    It’s not the first diagnosis thought of.  My blood tests showed an elevated white cell count.  I experienced tears in both corneas.  I had severe dry mouth. I couldn’t talk without frequent sips of water.   I had pain in my face and overwhelming fatigue.  I also began to loose hair.  At first, these symptoms seemed unrelated.

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