Newly diagnosised & I need a drink ;) Help for dry mouth please!

[deeindiana]

Hi everyone. I'm new to SS and kind of scared. Okay...not "kind of" scared. I'm just plain scared. I can't comprehend how I could be fine 8 weeks ago, go through a simply virus, and then BOOM! -- my mouth becomes unbearably painful with unexplained sores and I'm diagnosed with SS. Yes, I've had some vague symptoms for about three years (Blepharitis, dry/peeling skin, red/blotchy face) but the sudden way this mouth pain hit -- from nothing to vicious pain practically overnight -- has really shook me up.

The rheumatologist was quite calloused and offered little information or advice. He simply stated my antibody score (3.3), told me I have a "mild" version of SS, said "stay hydrated" and made me another appointment in six months. Huh? I didn't even get a cheap "Welcome to the exciting world of SS" brochure!

After crying for three days, I finally did some online research and found instructions for dry mouth. But I'm hoping some of you could offer personal suggestions on ways to ease my mouth pain. Although that is my main complaint, I'd appreciate ANY advice or encouragement you all can offer.

This doesn't feel "mild". My mouth burns all the time. It almost feels like the texture of the inside of my cheeks and gums is changing, getting rough/grainy. My taste buds around the edges of my tongue are bumpy and very red. It often feels like I have sinus drainage (or something back there) and need to swallow frequently. And yet  it often seems hard to swallow (which I confess makes me feel panicked). The inside of my upper lip gets lumpy and tender (doc said it is swollen saliva glands). Food or drink that is merely warm feels burning hot. I bought some over-the-counter things for dry mouth (Biotene gel, toothpaste and gum, Oasis mouthwash & spray) and they offer a little relief. But I sort of feel like I'm battling a forest fire with a squirt gun.

The mouth pain is changing who I am. Normally a funny, outspoken woman I have grown silent because it hurts to talk. I don't smile as often because it hurts. I avoid kissing my husband. I worry, "Will it always hurt like this?" "Will it get better?" "Worse?"

A little about me...  I'm 50, married, work in a library, and live in a constant state of stress. *snort* No, the library isn't that stressful! But on top of working full time I am a freelance photographer, care for my elderly parents and have an 18-year old son (always drama there!). My husband works out of state and I am in the process of selling our home and moving us all up to join him. It's a lot of hard work to handle alone.

One last thing: Today, I searched for someone who specializes in SS/Lupus and made an appointment with a doctor at the University of Michigan Medical Center. I don't get in for almost 6 weeks, but I'm trying to be hopeful that I'll get some good information and help in the end.

Sorry to drone on so long...  But any suggestions or advice will be deeply appreciated.

[Livvie2]

Hi DeeIndiana,

I could practically have written this exact post myself (including the drama with a teenage son!    ).
I've got to go out right now--I'm trying to think, though, of what is most soothing for when the mouth gets sore like that.

Biotene products are good.  Also baking soda and water (to keep the PH up; if the PH is low then very vulnerable to cavities).
(I sometimes add baking soda to the biotene mouth wash.)
I keep my mouth well coated during the night (with the biotene gel)--as night is very traumatic for dry mouth, to prevent waking up with sores and burning.  Wet the mouth a bit and then use a generous amount of the gel (several times during night as needed.)

I like Carifree gel as a toothpaste (but hate their gum; it's awful tasting; do not use).  It can be swallowed and holding it in my mouth when I need can be very soothing. It was recommended by a dentist.  I also use their fluoride rinse.
I also LOVE using a Waterpik.   


Xylitol is good.  Anything with Xylitol kills bad bacteria.  I  also sometimes add "good bacteria" back into my mouth with a product called  "Evoraplus" which are "probiotics" for the mouth. People with dry mouth are vulnerable not only to cavities (which occur at the base of one's tooth and there can be tooth loss) but also  "fungus." Fungus is considered a precursor, one dentist speaker talked about, to cancer. Also we don't want fungus as it's a major pain to get rid of.

Another product (to protect my teeth) I use is a mineral rinse that Marla told us about which was recommended at the last Sjogren's conference: Calphovess.


Dee, I  understand the panic and fear you are going through.
My symptoms for Sjogren's occurred in March and it was a major shock and trauma for me. I went through sobbing and grief and fear.   It changed my world.     
It's been very helpful to educate myself (read, research, try products). I am managing this disease with a lot of loving self care, but I know there are no guarantees it won't get worse.  It's one day at a time, and I'm grateful for things which I never thought to be grateful for (swallowing, tasting, speaking, for example)

Patze will recommend that you use the search tool on this site --and I recommend it also. It's very helpful. You can enter in "dry mouth" or whatever topic you want to research,  and it will give you a ton of information.  (There are also prescription meds to use--which others can talk about). 
I also  recommend Sjogren's Foundation.  They have tapes on dry mouth that you can order.  I posted about one on this site a few weeks back.

I have also found this group to be warm and supportive.  It's a shocking disease, Dee, which most people have not heard of, but it comes with a great group. It gives me comfort to know there are others and I'm not alone (though I wish, of course, none of us had to experience this.) 

   

Livvie2

[YYC_ Mommy]

I just wanted to welcome you here! It is a wonderful place with amazing people and it is my soft landing place when the rest of the world does not seem to understand. I know that someone here will.

For me my dry mouth is managable right now with drinking fluids and I always go out with gum or something else that I can put in my mouth when I am talking to people. I have tried Biotene myself and I really just don't like the taste of it, I prefer something that actually foams. But I am still searching.

For me the worst symptoms right now are the joint pain, fatigue and the electrical shocks through out my body.

Everything that you are feeling is what I have felt and still do. I hope that you find a wonderful doctor that can offer some treatment for you. I have MAJOR problems with my sinuses and I am now on Nasonex as well for that. It does seem to help the drainage for me.

Right now you have a lot on your plate, and you have to remember to take care of yourself. I know easier said than done! Sjogren's tends to get worse when you are under stress.

Again, welcome!

[deeindiana]

Thanks you Livvie2 and YYC Mommy for the kind welcome. It is truly appreciated.

Livvie2 - I will look up those products that you mentioned. Do you order these things online? My local drug store doesn't seem to carry much for dry mouth. I was surprised to see you mention baking soda. I thought about it, but was afraid it would dry things out even worse. And the Waterpik is a great idea!

Could you (or someone) direct me to the dry mouth video that you posted? I can't seem to find it.

I've noticed that some of the health food/alternative medicine sites offer "cures" for SS but I know that is just empty promises. But it's hard not to think, "This is all a mistake!" and a simple diagnosis for my problem will be found. But I guess there's no arguing with that antibody test of 3.3. 

I don't even know you people, but I already want to hug you!
dee

[Julie]

Dee,

I am sorry that you have been diagnosed with SS.  It is very likely that you have had this for awhile.  The episode you are having is the first 'flare' that you have experienced.  As the years go by and you learn more about this syndrome and its symptoms, you will think back and be able to put your finger on more odd reactions/illnesses, that at the time were unexplainable and dismissed.  These were early manifestations of Sjogrens.  

I really can't offer much more for your mouth than what the 2 ladies already have.  It sounds like you may benefit from a swish and spit prescription that calms thrush.  Many recommend sugarless hard candies for helping to produce saliva, but even those burn my tongue.  I do use Oasis spray from time to time.

What I DO want to offer you as a bit of hope so you wont' be so scared, is that your mouth will NOT stay like this.  It will come and go.  Be kind to the tissues of your mouth by avoiding spicy foods, alcohol, etc.  I am sure I didn't even need to say that.  You have found for yourself that those things hurt like crazy.  I can always tell when my mouth is in a flare because catsup burns.  I HAVE to have catsup on everything. I refuse to give that up.  I need it for the moisture to help me swallow things anyway.  The content of catsups vary from one brand to another.  After trying them all, I have found Heinz to be the least acidic.  When my mouth is burning from a particular food, what helps me is to put a teaspoon of sour cream in my mouth and hold it for a few seconds before swallowing.  It's very soothing.  Yogurt can help in this way too.  

Another thing that is very apparent as to why this flare up ocurred now.  STRESS play a huge factor in the symptoms of Sjogrens. Nearly everyone on these boards will tell you that the person with Sjogrens is a perfectionist by nature and one that tries to juggle a million things in their lives at once.  Along with that comes stress, and unfortunately Sjogren's flares.

Once you have gotten through the sale of your home, moved, and your family life has calmed down, you will notice your Sjogrens has also calmed down.  You have your hands full right now.  It WILL get better.

Welcome to the Boards and best wishes to you!!

Julie

[deeindiana]

What I DO want to offer you as a bit of hope so you wont' be so scared, is that your mouth will NOT stay like this.  It will come and go.

Julie - Thank you! This sentence actually made me cry! I didn't realize that this was what is considered a "flair" and that it would come and go.  I thought my mouth pain would be continual from now through eternity! Just knowing that there will be good days ahead too makes it more bearable.

Odd, but even though I read that stress makes SS worse, it never occurred to me that reducing my stress would make it better. Duh! Do SS patients find some relief through yoga, biofeedback, deep breathing (through the nose, of course!)  or other stress-reducing exercises?

The more I hear the more it becomes apparent that I need a doctor who is better then the guy who dropped this diagnosis on me like a bomb and then hurried on to his next patient.

Thank you again. You have no idea the relief that flooded through me when reading your post!
dee

[Sweetgirl]

Welcome! You are not alone.

I think we have all been where you are right now.  I have just recently joined the boards as well.  I was diagnosed with Fibromyalgia 10 years ago, but looking back, I think it has been SJS all along.  I am sero negative (nothing shows up in the blood work..yet) I've had the raised red rash and raw feeling on the tongue off and on for 9 years, and not one single doctor could tell me what caused it.  Unfortunatly you really have to be your own health advocate ( I am still learning about this illness through the wonderful people on this board)  doctors don't seem to know much about this illness.  At least the ones I have encountered.

I've just started a medication called Plaquenil.  The experts don't know how it works but it has helped a lot of people with the symptoms of this illness.  It takes 3 to 6 months or longer to kick in, but I am hopeful it will help me.  Might be something you could discuss with your new doctor as a possible treatment.

Good luck to you, and visit us as often as you need too.  We are all in this together.   

Hugs

Kristine

[DragonflyC]

Welcome!  I'm so sorry to hear that you've been suffering. 

There is hope with Sjogren's.  It sounds like you are heading in the right direction by seeing a specialist.  For some reason, too many doctors are not up-to-date with Sjogren's treatments and are strangely unsympathetic.

As for treatments, you've been given great advice in the previous responses to your posts.  I second all of the information provided!  There is no cure, but the things recommended here can make a huge difference.

Most of the advice so far has been for over-the-counter products, but there are also prescriptions available that might help you.

Plaquenil, as Sweetgirl mentions, may slow the progress of the disease, and it definitely helps a lot of us with fatigue and aches and pains.

A short course of a low dose of prednisone (a few weeks) helps some of us get out of a flare.

Evoxac and salagen are available to increase saliva.

Restasis helps some people produce more tears.

Many of us also take supplements like fish oil to increase moisture in our bodies and reduce inflammation.

A lot of things are hit-or-miss.  Nothing works for everyone, but trial and error (and a better doctor) will provide you with some degree of relief.  If you end up having to work with your original doctor, consider bringing an article or two--though no more than that--that explains the problems Sjogren's can cause (I like http://www.hqlo.com/content/7/1/46 but you'll find others if you look around on these forums).  Sjogren's is a lot like lupus, and doctors have finally begun to realize that it's more than just an add-on to other connective tissue diseases or a simple issue of minor dryness.  Don't be afraid to ask your doctor to let you try any of the treatments recommended by people on this forum.  Ultimately, you and your doctor will decide what's right for you, of course, but you'll get great ideas for what you can discuss trying here.

[Carolina]

Dear deeindiana:

Help is on the way!  You are in the right place and doing all the things you need to do.

And seeing someone at a Medical Center is at the top of the list of smart stuff to do.

Keep us posted.

We will be looking for you.

Kisses

Carolina

[bjnc]

Hi Dee,

I'm adding my welcome to the board.  As you can see, I'm fairly new here, too, and I've learned so much from this message board. 

I want to encourage you to find a new rheumatologist.  Don't stick with one just because he/she is the first one you've gone to, or it's too much trouble to find one that you like.  A good dr. who knows what he's talking about and cares about his patients makes all the difference in the world.  After the rheumy I had retired a few years ago (she was the 3rd one in our city I'd been to; the others were not good), I went to another and stuck with her for 3 1/2 years even though I was not pleased.  Just this January, I did some research and found another rheumy here that people liked, went to him, and he's great.  Very knowledgeable, takes time with his patients, and communicates that he really cares.  Always willing to try something else if what we're doing is not working.  I don't think waiting to schedule another appointment for 6 months is a good idea if you are going through so much now.  So try another dr. and find someone you're really happy with.

For dry mouth, I take Evoxac, and it has helped a lot.  It's a prescription you might want to ask about at your next appointment.

Hang in there, some days are better than others.  And allow yourself to rest when you're in the midst of not feeling so well.  That helps me with energy and joint pain. 

Becky

[Pegasus47]

My mouth is not bad.  My eyes are very dry.  I use TheraLife Autoimmune Dry eye formula - which helps with dry eye relief and seems to be regulating the autoimmune system to some extent.  Using less prednisone now, and less flare ups.

Pegasus

[warmwaters]

No good advice on the dry mouth from me, as that doesn't happen to be my worst symptom.

But welcome - and yes, we understand the shock of the new! One day you're fine, next day you're sick! Very, very very startling.

Here's one vaguely cheery thought - start researching the doctors in the area where you are moving to. Though the doctor you've got now may be a bit of a dud, maybe you'll find a great doctor in your new location.

And about the 18 year old. I used to work with a woman who routinely offered to give her son away on the company "for sale" email alias. Hope it's not that bad for you guys!

You've landed at a good place - there's a lot very helpful kind folks here.

[Livvie2]

Hi Dee,

I was referring to an audio tape of a lecture called "Dry Mouth and Sjogren's"  by Andres Pinto, DDS, DMD, from the 2009 Sjogren's conference that I ordered and listened to.  This is the link http://www.sjogrens.org/ssfstore?page=shop.product_details&flypage=flypage.tpl&product_id=34&category_id=6 (I reviewed it in an earlier post; I'll put the review in the "PS" of this post.)

For those of us unable to attend the National Conference on Sjogren's we can order audio tapes of various lectures for about 12 dollars each. They now have available tapes from the recent conference in San Francisco.

Here are links to some of the over the counter products I use. (I also added a link for Salese dry mouth lozenge. I really like those as I get headaches from aspartame sugar free candies such as Ricola).

I also like what Julie said about how your mouth will not stay this way. It does get better.  When it is very dry and/or I have burning issues as I did a few months ago, then I can barely tolerate anything with menthol or cinnamon.
Regarding the baking soda, I just use that to raise the PH sometimes.    

Carifree. for Oral Neutralizing Gel (which does foam, YYC, so you may like this), and Maintenance Rinse (both the mint and citrus are good, but the citrus is the gentlest if mouth is irritated)

http://www.carifree.com/patients/products/index.html

Evoraplus
http://www.evoraplus.com/
Salese
http://store.nuvorainc.com/salese_peppermint.aspx
Calphovess
http://www.calphovess.com/Default.asp

Livvie2
PS.Notes from the audio tape by Dr. Pinto.

Dr. Pinto talked about keeping the PH high, and he's aggressive with fluoride (even trays). He said a study found that less than half of Sjogren's patients use fluoride treatments. He said that was "shocking" to him.
He also talked about the way Sjogren's patients lose teeth. Typical decay (for a child) is more on the chewing surfaces. However with dry mouth, the cavities are between your teeth. We need to get X rays. He talked about those with dry mouth damage -that  fillings will pop out of their mouths.  Healthy mouth/teeth have "smooth and shiny" surface. Dry mouth causes "dull and spotty enamel"
Use non abrasive toothpaste. (Do not use any rinses with alcohol as it's drying). No peroxide.
Keep the mouth moisturized, he said and he said to try what's out there.  He said about half of dry mouth patients can "find relief" with this type of scrupulous care; the other half needs a "medication routine."

He also told about a patient who had acupuncture near her ear lobes and was able to increase saliva 40%. He said that's an amazing amount. Even if there was a 20% improvement, he said, that would help one's mouth substantially.
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[YYC_ Mommy]

Carifree. for Oral Neutralizing Gel (which does foam, YYC, so you may like this), and Maintenance Rinse (both the mint and citrus are good, but the citrus is the gentlest if mouth is irritated)

http://www.carifree.com/patients/products/index.html

Thanks for this, I will have to check it out.

[LeoLady]

Welcome, Dee.  (my sister's name!)  I second all that's posted thus far.  This site is so very valuable for support, resources and information - or just a place to vent.  Everyone struggles with different Sjogren's issues at times and it's so helpful to know you're not alone.  We all wish you speedy relief.

LeoLady