Cold weather tips from people with Sjogren's syndrome

These tips for coping with Sjogren's syndrome in cold weather come from members of the Sjogren's blog facebook page. You can join this page by following it here on facebook.

Ten natural cough remedies

Many people with Sjogren's develop a cough because of dryness in the air passages. 

Sjogren's is a systemic disease and treatment for a dry cough caused by SS should be treated by a medication/treatment that treats the whole body.

Many people, for a variety of reasons, do not fare well on these medications and choose to try complementary treatments. Here are 10 natural cough remedies (which were reviewed by a doctor):

1. Honey tea: mix 2 teaspoons (tsp) with warm water or an herbal tea. Drink this mixture once or twice a day.

2. Ginger: Brew up a soothing ginger tea by adding 20–40 grams (g) of fresh ginger slices to a cup of hot water. Allow to steep for a few minutes before drinking. Add honey or lemon juice to improve the taste and further soothe a cough.

3. Warm Fluids: beverages that may be comforting include:

• clear broths
• herbal teas
• decaffeinated black tea
• warm water
• warm fruit juices

4. Steam: Take a hot shower or bath and allow the bathroom to fill with steam. Stay in this steam for a few minutes until symptoms subside. Drink a glass of water afterward to cool down and prevent dehydration.

5. Marshmallow root: Add hot water to either dried herb or a bagged marshmallow root tea and then drink it immediately or allow it to cool first.

Marshmallow root is available to purchase in health stores or online.

6. Bromelain has anti-inflammatory properties. Some people drink pineapple juice daily to reduce mucus in the throat and suppress coughing. However, there may not be enough bromelain in the juice to relieve symptoms.

Bromelain supplements are available and may be more effective at relieving a cough. However, it is best to speak with a doctor before trying any new supplements. People who take blood thinners or specific antibiotics should not take bromelain.

7. Thyme is a common remedy for a cough, a sore throat, and digestive issues. To treat coughs using thyme, look for a cough syrup that contains this herb. Alternatively, make thyme tea by adding 2 tsp of dried thyme to a cup of hot water. Steep for 10 minutes before straining and drinking.

8. Dietary changes for acid reflux which is a common cause of a cough. Avoiding foods that can trigger acid reflux is one of the best ways to manage this condition and reduce the cough that accompanies it.

The foods and beverages that most commonly trigger acid reflux include:

• alcohol
• caffeine
• chocolate
• citrus foods
• fried and fatty foods
• garlic and onions
• mint
• spices and spicy foods
• tomatoes and tomato-based products

9. Slippery elm

Make slippery elm tea by adding 1 tsp of the dried herb to a cup of hot water. Steep for at least 10 minutes before drinking. It is important to note that slippery elm can interfere with the absorption of medications.

Slippery elm is available in powder and capsule form in health stores and online.

10. Probiotics

Probiotics do not directly relieve a cough, but they may boost the immune system by balancing the bacteria in the gut.

A superior immune system can help to fight off infections or allergens that may be causing the cough.

Supplements containing Lactobacillus and other probiotics are available at health stores and drug stores.

Some foods are also naturally rich in probiotics, including:

• miso soup
• natural yogurt
• kimchi
• sauerkraut

However, the number and diversity of probiotic units in foods can vary greatly. It may be best to take probiotic supplements in addition to eating probiotic-rich foods.

To read the full article with the reasons why these things are recommended please visit Medical News Today. 

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.

Why You Should Be Drinking Green Tea with Sjogren's Syndrome

GREEN TEA may prevent or slow down  autoimmune diseases.  It is a natural treatment being studied by Dr. Stephen Hsu, a researcher in the Medical College of Georgia, USA.  A component of green tea called EGCG helps suppress inflammation, according to Dr. Hsu and hi colleagues.

Dr. Hsu's study, at the Medical College of Georgia, USA,  found much less damage in the salivary glands in the group treated with green tea extract. About 30% of elderly Americans suffer from degrees of dry mouth, while only 5% of the elderly in China, where green tea is widely consumed, suffer from the problem.

Dr. Hsu says “EGCG...significantly lowered the serum autoantibodies, reducing the severity of Sjögren’s Syndrome-like symptoms.”

EGCG is Green Tea catechin.

"The benefit of using green tea in preventing or slowing these autoimmune diseases is that it's natural and not known to harm the body," says Dr. Kevin Gillespie, first author of the study.

More Reasons Why You Should Be Drinking Green Tea – for Type 1 Diabetes & Sjogren’s Syndrome.

 

I am trying to quit ordinary tea (AGAIN) and drink green tea. I am hoping it reduces the common symptom known as dry mouth.
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.

Do you have a favourite gum or dental product that you use for your Sjogren's?

Protecting your eyes with Sjogren's syndrome or Sunglasses Dilemma

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!

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.

Some dietary suggestions.

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

Gluten and Sjogren's

Several studies have shown that many people who have celiac disease, an abnormal immune response to gluten, also have Sjogren's syndrome. 
For example The findings show a close association between Sjögren's syndrome and celiac disease. Even among nonceliac patients with primary Sjögren's syndrome, an ongoing inflammation is often present in the small bowel mucosa. 1999 research (See RESOURCES below)

I was diagnosed with an intolerance to wheat, at the Prince Alfred Hospital Allergy Clinic in Sydney, over 10 years ago. This does not mean I am a celiac but I am finding that I feel so much better when eliminating all gluten, sugar and dairy.  I discovered when trying the paleo diet that most of my aches and pains disappeared and I had more energy too. I think my eyes and mouth also felt less dry , but can't really remember. I also found it hard to maintain in western society and I have unfortunately lapsed.

WHY IT IS HARD TO BE GLUTEN FREE?
Gluten is found in grains: it is a protein found in wheat, rye, barley, oats and triticale and I find it sneaking into my diet in so many ways unless I prepare every single piece of food myself.  Many thickeners used in gravy, sauces, mayonnaise and stocks contain wheat starch, soy sauce can contain wheat, icing sugar sprinkled on desserts even when requesting grilled fish and chicken dishes they may be floured before cooking. Some prescription medications and vitamins can also contain gluten.

WILL I TRY AGAIN?
It needs a concerted effort from me, especially as 4 other members of my household love bread and pasta, but it is definately worth it to be mainly pain free.

SO WHAT CAN I EAT?
All proteins and all veges both of which should make up the basis of my diet.
Fresh and dried herbs.
I can eat fruit but only about 1 piece a day (this is another issue, not gluten).
All beans and legumes.
Rice, tapioca, amaranth, arrowroot, millet, quinoa, sorghum, and chia seed. I have not tried all of these but I guess I should try.
Have I forgotten anything?

Do you have a problem with wheat or gluten? Have you tried an anti inflammatory diet or the paleo diet or Dukan Diet and found your symptoms improved?

RESOURCES:
1999 Celiac disease and markers of celiac disease latency in patients with primary Sjögren's syndrome. Iltanen S, Collin P, Korpela M, Holm K, Partanen J, Polvi A, Mäki M. .  Institute of Medical Technology, University of Tampere, Finland.

2004 Coeliac disease in Sjögren's syndrome--a study of 111 Hungarian patients.

Szodoray P, Barta Z, Lakos G, Szakáll S, Zeher M. Division of Clinical Immunology, Third Department of Medicine, University of Debrecen Medical and Health Science Centre, Hungary.

2007 Gluten sensitivity in patients with primary Sjögren's syndrome.

Lidén M, Kristjánsson G, Valtýsdóttir S, Hällgren R. Department of Medical Sciences Rheumatology, University Hospital, Uppsala, Sweden.

Coeliac Australia has helpful information on this condition

RECOMMENDED BOOKS:

• The Paleo Solution: The Original Human Diet  
• The Paleo Diet: Lose Weight and Get Healthy by Eating the Foods You Were Designed to Eat
• Paleo Comfort Foods: Homestyle Cooking for a Gluten-Free Kitchen

Sjogren's syndrome treatment

I've had Sjogren's Syndrome SS for over 6 years now and all that time I never knew essential fatty acids EFA'S would help treat many of the symptom's of Sjogren's.

EFAs have been implicated in the abnormal function of salivary and lachrymal glands. Measurements in Sjögren's syndrome patients have shown that EFA deficiencies are present (Oxholm P et al 1998), and controlled clinical trials of supplementation with EFAs, including gamma-linolenic acid (GLA), have yielded positive results (Horrobin DF 1984). 2012 Life Extension

So why aren't my GP and Rheumatologist and Immunologist telling me to take these essential fatty acids and what are they?
Apparently they are the Omega-3 and Omega-6 that we keep hearing about. They are found in flax oil and olive oil, dark green vegetables, such as broccoli, kale, spinach and seaweed, kidney beans and mung beans, salmon, tuna and mackerel, anchovies, sardines, cod, halibut, herring, mullet, trout, flax seeds, pumpkin seeds, walnuts, hazelnuts, cashews, almonds and brazil nuts.

I can't think of the last time I ate mung beans and I don't think I have ever eaten kale or herring, halibut or cod or mullet and I think i ate trout once when I was about 12.

I remember my grandmother telling me that everyone use to have a teaspoon of cod liver oil everyday when she was growing up. I wonder why we stopped?

Of course people with Sjögren's should consult with their doctor before taking any new tablets which may interact with their prescription medication.

Burning mouth in Sjogren's Syndrome

Lately my mouth symptoms have gotten so bad -
tongue tingling
burning feeling in whole mouth
loss of taste
feeling tongue is swollen
weird metallic taste in mouth
I drink alot of water but have learnt that while that is important it is not a cure. In SS, decreased exocrine gland function leads to the "sicca complex", a combination of dry eyes and dry mouth. An exocrine gland is not simply water. It is made up of complicated combinations of material for a particular task. For example tears are to lubricate, prevent bacteria and remove dirt and dust. So it is not just a matter
of replacing water in the diet.
So here are some things that I am trying to help control my extreme symptoms of dry mouth at present:

• I have noticed that sugar does aggravate these symptoms so I have eliminated it from my diet.
• I have been using lip balm daily.
• A gel-based saliva substitute at night or if I have a rest
• Mouthwash designed for dry mouth - I find this is the best relief (Make sure you never use ordinary mouthwash as this is extremely drying)

Here is some great information about treating dry mouth - What Can I Do About Dry Mouth?

Is there a diet that helps Sjogren's Syndrome?

Most doctors and specialist would say there is no specific diet for Sjogren's Syndrome and just to eat a healthy diet. Some may say to avoid your own known allergens. (Mine are dairy and wheat) This is due to the connection of SS to the immune sysytem.

Here at Sjogren's blog I will be highlighting some specific diets. This does not mean I have tried them or endorse them, I am just talking about them.

Dr. West has a Protocol for Sjogren's Syndrome which includes eliminating all milk, wheat, and gluten products for 30 days and helping you identify if these are triggers to your Sjogren's or not. You see every one is different. But you knew that, right?

Eye complications in Sjogren's Syndrome

When I came out of the anasthetic, after the operation, my eyes were really dry and sore, especially one of them. I thought I must have had my eye open or had been leaning on that eye or something as it just didn't seem right. I now know that Sjogren's Syndreome can have this complication and the surgeon and anesthetist should have been told I had Sjogren's. The moral of the story is no matter how mild or under control Sjogren's is these doctors need to know you have it if you are having any operation.
After my operation I needed to use eye ointments which are thicker than artificial tears. Because they moisturize and protect the eye for several hours. They may blur your vision so they are most effective during sleep.

Venus William's attempts to beat Sjogren's Syndrome

"Williams withdrew from September's U.S. Open with Sjogren's, a chronic disease where white blood cells attack moisture-producing glands and can cause dysfunction of organs and body systems.


The five-time Wimbledon champion, who changed her diet to include more vegetables after suffering fatigue from the disease, said last month that she hoped to return to the tour full-time in 2012 and to top the rankings. — Reuters" Read the full article from December 21st, 2011.

There is a wide variety of views regarding diet and Sjogren's Syndrome. Some people believe that modifying your diet can help Sjogren's Syndrome but there is no specific "Sjogren's diet". Here you will find a random variety of suggestions regarding diet. If you know of any more please let me know.

• As Sjogren's depletes the moisture-producing glands keeping hydrated is extremely important.



• Water is the best beverage to drink.



• Reduce caffeine



• Fruits and vegetables that are high in water content may be useful to hydrate the body. Some of these foods include celery, watermelon, peaches and cucumbers. Many people who have this condition feel that removing wheat and dairy reduce some symptoms.

• Thoughts on gluten free and Sjogren's Syndrome


• Diet & Food Tips from Sjogren's Syndrome Foundation



• Anti inflammatory diet at Sjogren's Syndrome site



• Anti-Inflammatory Diet Tips from Dr Andrew Weil



• Dr. West's Protocol for Sjogren's Syndrome

New Year's Resolutions for Sjogren's

These are my own personal goals to help manage my Sjogren's better and have a healthier year ahead:

1. Go to sleep at a regular and earlier hour

2. Drink more water throughout the day

3. Eat more fresh food - salads and fruits

HOPE YOU HAVE A GREAT NEW YEAR

SJOGREN'S SYNDROME BOOKS

• A Body Out of Balance by Nancy Carteron & Ruth Fremes




• Medifocus Guidebook on: Sjogren's Syndrome Elliot Jacob PhD. (Editor)




• Positive Options for Sjogren's Syndrome: Self-Help and Treatment by Sue Dyson




• The New Sjogren's Syndrome Handbook (Sjogrens Syndrome Foundation) by Daniel J. Wallace




• The Sjogren's Syndrome Survival Guide by Teri P. Rumpf & Katherine Morland Hammitt




• Understanding Sjogren's Syndrome by Sue Dauphin

Do you know any others?

What to do for dry eyes and dry mouth

Yesterday was extremely windy and it is the winter solistice here and people with Sjogren's do not cope well with heaters and wind as it dries them out even more. Today I have dry eyes, blurred vision, eye discomfort, dry mouth, swollen glands behind the jaw and difficulty in swallowing and I am very thirsty and fatigued.

I will use more mouth spray lubricants* for dry mouth and more drops for my eyes even though I always wonder if these things actually help much.
I definately need to get and use a humidifier.
More ideas for dry eyes.
More ideas for dry mouth both from (NIAMS) National Institute of Arthritis and Musculoskeletal and Skin Diseases
*The mouth spray lubricants are a saliva substitute that try to mimic saliva by making the mouth feel wet. You swallow them sooner or later. "It is best to use these products rather than water when awakening from sleep: They reduce oral symptoms more effectively, and they do not cause excessive urine formation." Interesting information from Is there any treatment? showing that they do have some benefit over just sipping water, but sipping water is important too.

Treatment of Primary Sjögren's Syndrome Reviewed

"There is a very low level of evidence for the majority of drugs currently used in primary Sjögren's syndrome, according to the results of a systematic review reported in the July 28 issue of the Journal of the American Medical Association." Read more of this 2010 article by Laurie Barclay, MD, at Medscape News.

Trying gluten free again

Jamie Oliver's Mexican meal

I do not remember what happened last time and why I stopped but I am going gluten free again. I now know that it is not a cure but it can help reduce some symptoms. I also understand that a small percentage of people with Sjogren's have inflammed small bowel mucosa similar to Coeliac disease.
The reason why I decided to try this again is the puffiness and aching I get in my fingers and toes after eating wheat (which I rarely do). This make me think there is some dietary connection for me.
I am also going to add green tea on a daily basis as I have just read of a Dr who believes it can reduce inflammation in autoimmune conditions. Wish me luck and stay posted.