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

The symptoms of Sjögren’s Syndrome vary greatly between individuals.
Symptoms 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?

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.

Sjogren's fact of the week

Gluten: Wheat, rye & triticale

Biopsy of the small bowel revealed the occurence of celiac like disease in 15% of Primary Sjogren's Syndrome patients.

Want more information: Institute of Medical Technology, University of Tampere, Finland:

Celiac disease and markers of celiac disease latency in patients with
primary Sjögren's syndrome.

Read more about gluten (wheat, rte and triticale) and Sjogren's Syndrome and my personal story here.

What affects your dryness in Sjogren's?

Have you noticed a problem with sugar and your health?

I have found a few things that increase my Sjogren's dryness in my mouth. Obviously salt and soy sauce and take away foods that are full of salt but also tea. Yes plain ordinary tea. I drink it with skim milk and almost 1 sugar. Whenever I have a cup of tea my tongue gets sore afterwards, almost as if the tea has burnt it but I am not drinking it very hot.
Now I have found something that actually decreases my mouth dryness! SUGAR. I don't mean eating sugar, I mean removing sugar from my diet. The added bonus is when I don't use sugar I don't enjoy tea so it kills two birds with one stone. The dehydrating effect of tea is gone and the sugar is gone too.
If you are interested in quitting sugar I have found a great book called The 21 Day Sugar Detox which gives a step-by-step program, recipes, guidance including daily emails and an online community. Click Here! if you want to find out more.

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)

Why You Should Be Drinking Green Tea with Sjogren's

More Reasons Why You Should Be Drinking Green Tea – Type 1 Diabetes & Sjogren’s Syndrome.
I am so trying to quit ordinary tea (AGAIN) and drink green tea. How about you? What do you drink? Black, green, both or none?

New gum for dry mouth in Sjogren's Syndrome

A worrying symptom of Sjogren's Syndrome is dryness of the mouth, which can lead to dental problems and a cough. A chewing gum called MighTeaFlow is now available for dry mouth.

 

• Helps reduce bacteria that flourish in a dry mouth, causing plaque and tooth decay
• Helps relieve mouth dryness without side effects with all the benefits of green tea and Xylitol
• Naturally stimulates salivary flow.

Xylitol helps prevent dental decay and stimulates saliva.
Jaborandi leaf extract is a herb that has been used in South American countries for centuries to increase secretion. 
Developed by Dr. Stephen Hsu, a professor at Georgia Health Sciences University, College of Dental Medicine.

It is made in the USA at FDA-Approved Manufacturing Facilities – U.S. Patent Technology. I have not seen this product in Australia yet. Is anyone using this gum and what do you think of it?
The only place I can find to purchase it is here.

DISCLAIMER: I am not affiliated with this product in any way and do not get paid when you purchase their product.

Protecting your eyes with Sjogren's syndrome

I can't go out of the house anymore without my eyes being so aggrevated the rims turn red and I look like I've been crying. I wear multifocals normally and here begins the dilemma.  What to wear to protect my eyes from glare? Only another person who wears multifocals will understand.
If I use normal sunglasses I am as blind as a bat.
I bought some clip ons and lost them and they may also scratch the lens of the multifocals. (Also my daughter tells me they are not cool!)
Apparently you can get wrap arounds that fit around the top of other glasses but they are expensive and block your vision. So the dilemma continues!

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 you can do when diagnosed with Sjogren's Syndrome

Shout: "Hurrah, finally some one believes me, I am not going crazy, I am not a hypocondriac, I have Sjogren's Syndrome." Yes, diagnosis is difficult and it is just the first step. The next step is realizing that SS is usually not life threatening but it is a chronic condition that needs on going attention.

Just as we get a handle on it the symptoms can change, flare ups occur and new symptoms arrive. We must constantly re evaluate our health to get the best quality of life. Here are some handy hints from people with Sjogren's Syndrome:

You need to be actively involved in your own care to find the best ways to relieve your symptoms. Smoking, poor diet, alcohol and certain medicines may aggrevate your condition.

Get a good relationship with a G.P. and a rheumatologist who will help you maintain a reasonable quality of life.

A healthy diet and a healthy lifestyle may help manage your symptoms.

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