Sjögren's syndrome affects more than exocrine glands!

Sjögren's syndrome (SS) is a common immune disease that mainly
affects the exocrine glands. That's what we usually read! But we sufferers know that it affects many, many other parts of the body.

What exactly though is an exocrine gland? These are glands that secrete a substance out through a duct. They include the salivary glands, sweat glands and glands within the gastrointestinal tract, which is the stomach and intestines. The exocrine glands are the "glands of external secretion." (medicinenet)

Xerostomia is the medical term for dry mouth. But it is so much more:

• reduced saliva 
• tooth decay 
• dental erosion 
• difficulty wearing dentures
• oral thrush  
• altered taste sensation 
• altered sense of smell 
• burning or tingling sensation in the mouth
• deep grooves in tongue 
• difficulty swallowing and chewing 
• dry, sore, and cracked lips and corners of the mouth 
• mouth soreness 
• dry throat 
• dry cough 

Keratoconjuctivitis sicca is the condition of having dry eyes. Symptoms include:

• eye irritation 
• redness 
• discharge
• easily fatigued eyes
• blurred vision
• scarring of the cornea may occur without treatment
• pressure behind the eye
• excess tearing

SS can involve many other organs including:

• lung (interstitial lung disease)
• kidney (renal tubular acidosis and hypokalemia)
• nerve (peripheral neuropathy) 
• vessel (vasculitis, Raynaud's phenomenon)
• bladder (interstitial cystitis)
• lymph node (lymphadenopathy)
• liver (autoimmune hepatitis)
• pancreas (pancreatitis) 
• GI (reflux esophagitis, peptic ulcer)

Join in with us for Sjogren's Awareness month this April

What can you do to help spread Sjogren's Awareness?
If you are on facebook please join us there for giveaways, games and information about Sjogren's that you can share. There will also be many opportunities for you to share your story.

If you are on PINTEREST maybe you could share some of our blog posts.
If you are on twitter please share some of our posts.
Helping others hear about Sjogren's Syndrome and understand about it is the beginning of community awareness and the first step in getting more research into the disease.

Personal stories about Sjogren's Syndrome

This was posted on the blog and we get so many stories here I thought it would be very worthwhile to share some of them:

I was diagnosed at the age of 2, very uncommon, and I am now 24.
The past couple years I have been developing more problems and discovering different symptoms connected with my SS.
Last year I had a lung biopsy and am now taking an inhaler as needed. I started seeing my Rheumatoid specialist at the age of 14 and it was discovered that I had rheumatoid fluid in all my joints. The fluid has decreased but pain is reoccurring.

The most common symptoms I have are: chronic arthritic pain as well as inflammation in my periodic/salivary glands. I have changed my diet and am now trying to be gluten free. Gluten causes inflammation, which SS can tend to be associated with. I have only been gluten free for a few months, however, I do see a difference in how I feel overall.

I am glad I discovered this blog. I find it interesting reading other's experience with SS since I've never met anyone else with this disorder considering it is very rare at my age.

Sjogren's Fact of the Week

90 percent of those who get Sjögren's Syndrome are women. Read more

Primary Sjögren's syndrome sufferers prone to develop serious complications

I did not like the results of this study and found it quite depressing.

Patients with primary Sjögren's syndrome are prone to develop serious complications over the long term, despite the presumption that this is a relatively benign autoimmune disease, a 25-year review found.

For instance, fully half developed an additional autoimmune disease such as cutaneous lupus, and one in every 10 was diagnosed with non-Hodgkin's lymphoma, according to Esha Abrol, BSc, of University College London.
 

The study was of only152 patients but they had been studied since 1986. There were other important facts that came out of this study as well:

• one quarter of the patients had nervous system involvement and peripheral neuropathy
• 18.5% of patients had died at an average age of 72, which is 10 years earlier than the average life expectancy of a woman un the UK
• the most common disease was non- Hodgkin's lymphoma

I am not sure what can be done about this except to enjoy life while we have it and have regular check ups by a specialist in Sjogren's Syndrome.

Do you feel that you have a good specialist who understands all this?

Read the full report from Medpage. Maybe we should be printing it out and taking it to our specialists.

 

Sjogren's Fact of the Week

Experts estimate that more than 4 million people have the disease.  

This makes it the second most common rheumatic disease yet many people have never heard of it. Read more...

What is Primary Sjogren's Syndrome

Primary Sjögren’s Syndrome is a diagnosis given when the person has no other autoimmune disease.

This is not exactly true though as I was told I had Primary Sjogren's even though I had an autoimmune thyroid disease.  Apparently autoimmune thyroid diseases are so prevalent in people with SS that they have been taken out of the equation. 

When Henrik Sjögren, the Swedish ophthalmologist, presented his thesis on Sjögren's in 1933, there was no such thing as Primary and Secondary there was just the name Sjögren's syndrome.  He wrote about 19 female patients with lacrimal dysfunction and dryness as keratoconjunctivitis sicca, meaning "inflammation of the cornea and conjunctiva" 13 of whom had arthritis. 

The symptoms of Sjögren’s Syndrome vary greatly between individuals and include a dryness of the moist areas of the body, like the mouth, eyes, ears, nose and vagina. Fatigue and depression, plus painful joints, are also associated with the disease.

When organs other than the lacrimal and salivary glands are affected, this is known as “extraglandular involvement.” Usually, this occurs in patients with primary Sjögren’s syndrome (see “Primary Versus Secondary Sjögren’s Syndrome”). 

Manifestations of Primary Sjögren’s Syndrome include :

• joint inflammation
• particular forms of autoimmune thyroid, kidney, liver, lung, and skin disease
• changes in nerve function of the upper or lower limbs
• small proportion of patients may progress to a form of lymphoma

Do you know if you have Primary or Secondary Sjögren’s Syndrome?
Did your specialist define this for you?

RESOURCE:  National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Did you know April is Sjogren's Syndrome month?

I am trying to post more often this month to help increase awareness of Sjogren's Syndrome. I figure it is the first, and basic step, in getting more research into this annoying condition.
Sjögren's Syndrome Foundation is promoting Bold Blue Day.
Do you know of anyone else doing something specially for Sjogren's awareness this month? Please let me know so I can post it here.
Also if you would like to help spread the word please post this on your social networks using the handy little buttons below - Cheers.

Do I have Primary or Secondary Sjogren's Syndrome?

Primary Versus Secondary Sjögren’s Syndrome

Sjögren’s syndrome is classified as either primary or secondary.
Both are systemic diseases, meaning they can affect many systems in the body, and they occur with about equal frequency.

The primary form causes early and gradually progressive decreased function in the lacrimal and salivary glands, and can include a variety of extraglandular conditions.

The secondary form occurs in people who already have another autoimmune connective tissue disease, most commonly rheumatoid arthritis or systemic lupus erythematosus. These people then develop dry eyes or dry mouth.

Some people with Sjögren’s syndrome have certain autoantibodies circulating in their blood called “anti-SS-A” and “anti-SS-B.” They are strongly but not exclusively associated with Sjögren’s syndrome. Other people with clear evidence of primary Sjögren’s syndrome do not have those antibodies.

Although people with secondary Sjögren’s syndrome generally have less severe ocular and oral problems than those with the primary form, they also have to contend with the effects of their primary disease (i.e., rheumatoid arthritis, systemic lupus erythematosus, etc.).

FROM: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Do you know if you have Primary or Secondary Sjogren's Syndrome?

Defining Sjogren's Syndrome

The Free Online Dictionary defines Sjogren's Syndrome as "A chronic inflammation of the lachrymal and salivary glands, often accompanied by rheumatoid arthritis and the presence of autoantibodies in the blood, occurring chiefly among women."

The Online Medical Dictionary says it's "An immunologic disorder characterised by progressive destruction of the exocrine glands (sweat glands, lacrimal glands, salivary glands). Symptoms include dry eyes, dry mouth, persistant cough (dry airways) and lack of saliva."

The lachrymal glands are the glands that produce tears and the salivary glands are those that produce saliva.

Does your Sjogren's affect your eyes and your mouth?
Do you have a persistant cough?
Do you have rheumatoid arthritis?

What are you doing to help your dry eyes in Sjogren's?

Man applying eye drops (not me)

Sometimes I am in the groove and remember to put my drops in regularly and other times I misplace them or forget and then I suffer! As I've mentioned before my eye problem is minor compared to some people with Sjogren's Syndrome. I get dryness and sometimes itching and I am mostly always sensitive to light. ( I use Systane, the regular one)

 

If I'm in a flare I get grittiness feelings and use ointments. (No particular brand).

 

What have you tried for your dry eyes? Have you had surgery on your tear ducts? Did it help?

Do you have any other tips you think help you eyes?

 

What Can I Do About Dry Eyes?  Has the following in detail:

 

• Eye ointment
• Artificial tears
• Hydroxypropyl methylcellulose
• Surgery to close tear ducts
• General Tips for Eye Care

Sjogren's Syndrome awareness

Greater awareness about the condition would aid faster diagnosis. Once diagnosed, therapy for Sjögren's syndrome is possible. Dr. V.R. Joshi MD

Consultant Rheumatologist, Hinduja Hospital, Mumbai

 

 

Symptoms of Sjogren's Syndrome

 

True stories about Sjogren's Syndrome at Lynne's Page about Sjogren's Syndrome.

Have you visited our facebook page which gives you resources to share about Sjogren's Syndrome?
Are you joining in to spread Sjogren's awareness and if so what are you doing? I would love to hear?

Sensitivity to light is a symptom of Sjogren's Syndrome

Did you know that people with Sjogren’s can react to the sun and other sources of ultraviolet light? Apparently this is a known fact and mentioned on many, many sites about Sjogren's Syndrome but no one says why! I am still searching for the reason why the sun affects me adversely, computer screens irritate my eyes and some with Sjogren's get migraines from bright lights. Anyone know?

Conditions often seen in conjunction with Sjogren's Syndrome

Adie's pupil
Anemia
Arteritis
Biliary cirrhosis
BlepharitisCandidiasis of mouth
Carpal tunnel syndromeChronic active hepatitis
Chronic interstitial cystitis
DermatomyositisEsophageal reflux
FibromyalgiaProgressive systemic sclerosis or Scleroderma
Lymphoma: Non-Hodgkins
HTLV-1 Human T-cell lymphotrophic virus, Type I
Lymphoma, malignant (non-Hodgkin's)
Polyclonal hypergammaglobulinemia - a rare blood condition
PolymyositisSystemic lupus erythematosis
Rheumatoid Arthritis
Vasculitis (of which there are many kinds)

I have made bold the ones I have and I am refusing to get any more!

What of these do you have?

RESOURCES:

NEUROMUSCULAR DISEASE CENTER Washington University, St. Louis, MO USA
Sjogren's and its treatment by Dr. Robert Fox and colleagues at the Scripps Clinic, and updated/modified by Dr. Robert Bennett.

New dry mouth treatment

I am always thirsty,
my tongue often has a burning feeling
and my mouth is dry no matter how much water I drink.
40 percent of American adults have similar symptoms!

A clinical trial using an all-natural lozenge to treat dry mouth, may change all that. It is conducted by Georgia Health Sciences University College of Dental Medicine.
"These patients' mouths are as dry as if you've closed the faucet, and we want to turn that faucet back on," said Dr. Stephen Hsu, Molecular and Cell Biologist and co-investigator of the study. "The cells and glands that produce saliva are still there, they're just not working." Continue reading

The cause of Sjogren's Syndrome

The cause of many auto immune conditions is not clear. A combination of factors cause something to go wrong with the immune system. These factors relate to heredity, hormones, viral or bacterial infections, loss of immune tolerance or the nervous system.

The cause of Sjogren's is not clear either. The white blood cells, called lymphocytes, attack and damage the moisture-producing glands - mainly the tear and saliva glands. This causes dry eyes and dry mouth. Sometimes the skin, sinuses, airways and vaginal tissues are also affected, causing dryness in these areas. Sometimes the white blood cells damage other organs, including lungs, kidneys and liver.

The difference between primary Sjögren’s and secondary Sjögren’s?

Sjögren’s syndrome is usually classified as either primary or secondary. All people with Sjögren’s can experience severe discomfort and complications.

Primary Sjögren’s occurs by itself and causes early, gradual and progressive decrease in the gland function in the eyes and mouth. It can include a variety of extraglandular conditions involving dysfunction of the heart, lungs, liver, renal system, nervous system, muscles, joints, skin, vascular system and blood.

Secondary Sjogren's occurs in people who already have another autoimmune connective tissue disease, such as rheumatoid arthritis,vasculitis or lupus. These people then develop dry eyes and/or dry mouth.


Further reading:

Similarities and differences between primary and secondary Sjögren's syndrome Research report at PubmedNeurological Manifestations Of Sjögren's Syndrome by Steven Mandel, M.D.

Difficult diagnosis in Sjogren's syndrome

This disease, Sjögren's syndrome, affects over three million Americans and is a common autoimmune disorder but how many people have heard of it?
Few people know how to pronounce it, let alone have heard of it and doctors rarely consider it when patients describe their symptoms. Apparently medical students do not learn much about Sjögren's and the symptoms are wide and vary from patient to patient. All of this leads to an average six years delay before diagnosis.

This is a dilemma as early diagnosis is important especially as people with Sjögren's have a higher risk of developing lymphoma. If they knew they had Sjogren's they could be alerted to the early warning signs of lymphoma cancer.

SYMPTOMS OF SJOGREN'S SYNDROME

Symptoms of Sjogren's Syndrome (SS) vary from person to person. No one person has all the symptoms listed. Some people have mild dry mouth and eyes and extreme muscle pain and others have only dryness and no muscle pain, making SS harder to diagnose.

Signs and symptoms of Sjogren's Syndrome may include:

Dry eyes
Dry mouth
Light-sensitive eyes
Corneal ulcers
Fatigue
Enlarged glands — especially salivary glands, located behind your jaw and in front of your ears
Difficulty swallowing or chewing
Change in sense of taste
Hoarseness
Oral yeast infections, such as candidiasis
Irritation and dryness in your nose
Dry skin
Skin rashes
Vaginal dryness
Dental cavities
Dry cough
Joint pain, swelling and stiffness
Muscle pain - especially on use
Nerve pain
Damage to tissues of lungs, kidneys and liver

While Sjogren's Syndrome cannot be cured many of the symptoms such as dry eyes and mouth can be managed.

Dr Peter D'Adamo explains SS:

"Sjögren's syndrome is a chronic disorder of unknown cause characterized by a particular form of dry mouth and dry eyes. This loss of tears and saliva may result in characteristic changes in the eyes (called aqueous tear deficiency or keratoconjunctivitis sicca) and in the mouth with deterioration of the teeth, increased oral infection, difficulty in swallowing, and painful mouth. There are many different causes for dry eyes and dry mouth. When they occur as a result of an "autoimmune" process, the condition is called Sjögren's syndrome, which usually occurs in middle-aged women and has prevalence in about 1 in 500 persons. Patients may also have inflammation of the joints (arthritis), muscles (myositis), nerves (neuropathy), thyroid (thyroiditis), kidneys (nephritis), or other areas of the body. Also, patients may have severe fatigue and disruption of their sleep pattern. Also, the blood of Sjögren's patients may contain antibodies directed against normal cellular substances such as nuclear antigens and immunoglobulins. Therefore, this disease is termed an "autoimmune" disorder to denote the apparent reaction of the immune system against the patient's own tissues." Dr D'Adamo's site explains why he recommends the use of Fucus, Nettle Root and Probiotics to help ease the symptoms of SS.