home remedies?

[msabball]

Hi
I am 32 male - diagnosed with SS 3 months ago.   Negative ANA but lip biopsy done showed Grade 3 SS.  Dry eyes - I have had cornial erosions due to my dry eyes atleast once every 2 years before I had the punctal plugs inserted 2 months ago.

I wanted to add some of my symptoms to see what others thought and what life will be like for me moving forward.  As mentioned I am 32 and trying to start a family with my beautiful wife.   I have had dry eyes my entire life but one day my mouth just went dry.

Since I was diagnosed 3 months ago - my mouth is very dry - my tongue is actually coated white.  My breath is HORRIBLE im sure due to the lack of saliva.  When they did the saliva test it showed i had less than 1/3 of normal.  Also I have 12 cavities.  My wife has been GREAT in trying to help me - come up with a plan to attack life.   I am also pretty tired - I have had punctal plugs put in my 2 eyes.  Because I have woken up before with a cornial erosion.  I feel feverish all the time and very hot.  I am trying to drink 1 gallon of water per day.  i have no joint pains or anything else....

What does a Grade /Level 3 SS mean? is that the worst?  What can I expect moving forward in life?  What home remedies can help with me dry mouth - white tongue and bad breath?  I have read that SS can attack other parts of the body....what can I do?  Also - if I cannot handle the evoxac medicine what else is there for meds?

How do I plan for the rest of my life? what do I expect?  please help

[Scottietottie]

Hi msabball 

Welcome to Sjogren's world!  I haven't heard of SjS being graded before. That's a new one to me so I'll watch and see what others answer.  Do you see a rheumatologist and an opthamologist? Usually an opthamologist will suggest Restasis I believe. One of our long standing members suffered from corneal abrasions and found that Restasis helped. Also it;s important to try to use preservative free eyedrops.

SjS is progressive but it can progress very slowly and can even come to a dead halt sometimes. You could be one of the lucky ones who never gets the joint pain. It's possible. I realise that the dryness is painful in itself.

A lot of us get put on Plaquenil when we are first dxd as it's meant to slow down disease progression. In my case it also helped my eyes a bit too and increased my energy levels. Recently I've been taking cod liver oil capsules 3xper day and I think they are helping too.

Have you had your mouth checked to make sure you don't have 'thrush'. Sjoggies are more susceptible to it.

Take care - Scottie 

[msabball]

hi scottie,

Thanks for the feedback.  Is Plaquenil over the counter?  I am on evoxac but it is making me drowsy so i need to see my doctor.  I do have an opthamologist who inserted puntal plugs.   My tongue has had a white coat for a long time - they say its not thrush.   My breath is horrible and I am trying to get my teeth cleaned asap

How often should i brush? should I floss? should I drink lots of water? specific diet I should be on?  I have not seen a rheum but I may

It sounds like the corneal erosions are not normal?  I am only 32 but so scared for my future

[genko_b]

Plaquenil is not over the counter. It is worth asking your doctor about though. It really helps many of us, others not so much. You won't know until you try.

Definitely brush and floss. There are a number of products for dry mouth and eyes - drops, creams, sprays, etc. Look through the threads on this forum and you will find many suggestions for how to make yourself more comfortable.

Corneal abrasion or erosions are common when your eyes are dry and untreated. The Restasis helped me to completely clear mine up. My eyes feel very good now. I still use Restasis and also over the counter drops to moisten. Your eye doctor will explain to you how to do this.

Once you get into a routine of caring for yourself, you will find your life will go on. No one can predict how your disease course will unfold, but there are manay things you can do to deal with it and have a good life.

Take care.

Genko

[lynnmarie219]

Some of the over the counter products that Genko mentioned are Biotene mouthwash, gel and toothpaste....there is also an Oasis spray for dry mouth and other products as well. These can be found in any department store within the toothpaste and toothbrush aisles.

Sipping water always helps, sucking on sugar free candies (lemon works well to stimulate saliva) and gum can also help! Please make sure that you see the dentist more often to avoid anymore problems with your dry mouth. I Would also make sure that the doctor/dentist checks out the tongue again to insure that you get some kind of answer as to what it is that is causing the white coating on the tongue. As Scottie said...its usually diagnosed as thrush and treated fairly easily. 

Good luck to you!

[Annj5]

Hi Msabball,

I'm glad that you found this forum. It's a great place to ask any question you may have and get some great answers.

I am wondering if you are seeing a rheumatologist for your Sjogren's? This is the type of MD that seems to treat most Sjogren's patients. There are others, such as immunologists and internal medicine physicians.

Usually, when a diagnosis is made and the patient is symptomatic to the extent that you are, they are started on some medications to slow down the autoimmune effects, such as plaquenil. It definitely is a prescription drug, may take several months to take effect, but also must be monitored by eye exams and labwork to make sure there are no unwanted side effects. If your inflammatory markers such as C-reactive proteins or sed rates are elevated, then sometimes other drugs such as prednisone may be used short term to help reduce inflammation and discomfort until the plaquenil kicks in. If the plaq doesn't work for you, there are other drugs to try.

As others have mentioned, its really important to take good care of your mouth and teeth. Decreased saliva production can wreak havoc in your mouth, on your tongue, and can promote lots of cavity formation. A white coating on your tongue may simply be a symptom of dryness but it could also be a symptoms of a yeast infection, as others have mentioned earlier. Your doctor can prescribe medications to treat the yeast infection.

Please let us know how things go for you!
Julia

[Joe S.]

Hi Msabball,

My background is alittle different. I started wit Fibromyalgia. After a trip to a pain clinic with training in alternative care. I find I am doing better than the others that have followed traditional western medicine over the years. I am new to Sjogren's also. Plaquenil and methotrexate are not options for me, I have bad side effects.

I believe that we should 1) support our bodies, 2) remove toxins from our body, and 3) eliminate the cause. We can support our bodies with diet, supplements, vitamins, herbs, teas, and juice therapies. We can remove toxins with chelation, herbs, teas, and poultices. In order to eliminate the cause we must learn the most that we can about it.

Some ailments can be eliminated with pharmacological means. Some your body will take care of if it is supported. There are other alternative therapies that can eliminate "bugs" like those from Rife, or the sounds that have been traditionally used in Tibet and India.

In order to truely eliminated the illness we must learn as much as we can about it. What causes it? How does it progress? What treatments have we got? How well do the treatments work? Are we just treating symptoms or are we treating the disease? If we are treating symptoms, why does a treatment work for one person and not another? Does anyone have any other ideas?

I read an article in Popular Science magazine a number of years ago about a Red Tide out break in the northeast. The CDC (Center for Disease Control- US) decided to throughly investigate it because it was impacting a major industry. They isolated the bug and grew it in various mediums. Suddenly their researchers became very ill and some died. The illness depended on what medium they grew the bug in. Some developed cancers, MS and other varieties of autoimmune diseases. The result was that the Red Tide, was reclassified from harmless to dangerous because the bug mutated to 24 different forms. Could this bug or something similar be what is impacting our bodies?

[Skylar]

Sorry to hijack the post - Joe S., red tide is an overgrowth of algae and not a bug. The danger is with some overgrowth of algae, they produce toxins which can cause health problems in humans and the aquatic animals living in the water where this is happening. Not all overgrowth of algae is dangerous, just some. But you're right - you want to avoid these dangerous and life threatening toxins. You can read about it in wiki http://en.wikipedia.org/wiki/Red_tide

Hi Msabball and welcome. Definitely try the biotene products - I find their toothpaste, mouthwash and gel very effective. I did read somewhere that we should avoid lemon or other citric flavored candy because it has acids which can damage our tooth enamel - but I can't remember where I read this or if it is true - but definitely buy candy/gum with Xylitol and not sugar. Sipping water should be you main fluids - to keep your mouth and body hydrated as you compensate for poor saliva.

I believe that the grade refers to a quantification of inflammation seen in your biopsy. It does not refer to how bad your Sjogren's symptoms will become. Ask your doctor for clarification on this issue so you can put your and your family's minds at rest on that subject. Learning all you can about your disease and treatment options will really help - there is a ton of info here that you can start reading through old posts and a lot of good support.

Skylar

[Pooh]

Hi Msabball,
Welcome to our forum.  As the others have said, Biotene products are really good for those of us with Sjogren's.  It doesn't burn your mouth and is really quite soothing to the mouth.

I also think you should definitely talk to your opthalmologist about being put on Restasis.  I had severe cornea abrasions in both eyes and after using the Restasis for about a year, they have healed up.  I also had my bottom ducts plugged a couple months ago and WOW what a difference.   

Skylar, I think what you heard was not to use lemon hard candies with sugar.  Always use the sugar free lemon drops or hard candy.  This will keep a check on the cavities and saliva.

Welcome again Msabball, and come often.  We aim to help all those we can. 

Pooh

[Sjenny]

Dear Msabball:

I also suffer from dry mouth.

To protect teeth from lack of saliva:

I brush with Restore toothpaste which restores the calcium and other mineral ions saliva uses to protect teeth.  I buy it online at the following website:
http://www.dentist.net/dr-collins-restore-toothpaste.asp

I also apply MI Paste which can be found here:
http://www.dentist.net/prospec-mipaste-recaldent.asp

MI Paste is supposed to strengthen tooth enamel like Natural saliva since it contains calcium and phosphate.

Also, I gargle with Biotene mouthwash containing bioactive enzymes to protect the teeth which I get from Walmart.  Many people prefer the Oasis mouthwash.

I also floss after every meal.

For comfort from the dry mouth, if you don't like the Evovac, the other prescription alternative is Pilocarpine (Salagen).  Pilocarpine brings moisture to my eyes and nose too. 

A few members on the forum say that the prescription drug Plaquenil reversed their dry mouth.

I use Biotene Oral Balance mouth gel to coat my tongue which I can't find in my area except online at:
www.drugstore.com

My rheumy recommends coating the tongue with Vitamin E oil for comfort.  I sometimes coat my tongue with Fish Oil (yeah it tastes terrible) because I'm afraid of getting too much Vitamin E and because fish oil is good for dry eyes. (Yeah, I smell like fish and I don't particularly even like fish.)

Sucking on Crystal Light sugar free lemonade candies makes saliva flow.  Sucking on Methyl B-12 tablets (which I order from www.iherb.com) makes my tongue comfortable (I dont know why, but it works) and it also protects the nerves.

I hope you find the care you need.
Best Wishes,
Sue