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I woke up with a super dry mouth most mornings in first few weeks after finding out and bought these lozenges which helped a bunch.

First Symptoms

My first Sjogrens symptom was a weird sensation of dryness in my upper gums, and what I thought was extreme thirst - I realized I was carrying a bottle of water with me everywhere, but figured I was just dehydrated.

After that, things progressed to a tight feeling in my throat, like I had something stuck there. I was constantly coughing to try and relieve the feeling. I put it down to work stress.

My next symptom was dryness of my nose and sinuses. It was winter, and it literally hurt to breathe on my daily walks with my dog. My nose provided no moisture or humidity at all to the freezing air I was breathing in.

I realized I had a real problem when I went to a local Swiss-German deli and ordered a plate of cold sliced meats with dry crackers and bread. As I ate I realized my mouth wasn't producing saliva. The food was sticking to my teeth and gums, and swallowing the crackers was impossible without taking a sip of water with each bite.

After this experience, I made an appointment with an Ear/Nose/Throat (ENT) specialist, who put an endoscope up my nose (not the most comfortable procedure!) and said he'd never seen anyone with such dry sinuses.

He prescribed me Salagen (the generic is Pilocarpine), which to my amazement made my mouth produce saliva again. It also had the 'fun' side effect of making my nose run as if I had a cold, and bringing me out in a full-body flop-sweat for an hour after taking each pill. Yuck! I actually had to cut pieces off each pill with scissors to minimize this effect.

But once I found the right dose (half a Salagen pill) it was wonderful to have saliva again, if only for a short time after taking each pill.

Seeking a Diagnosis for my Dry Mouth

The ENT referred me to a Rheumatologist, who did all sorts of blood tests that came back negative for Sjogrens, including the "Early Sjogrens test". By now my nose and mouth was so dry that I developed severe insomnia - for almost 3 months after my first dryness symptoms I slept only 1 or 2 hours a night. Each time I tried to sleep, my mouth got so dry I had the irresistible urge to reach for my bottle of water to take a sip. And of course after an hour or so of this I had to get up and go to the restroom.

I tried switching the water bottle for a bowl of ice chips, which would inevitably end up in the bed with me as I reached for one so frequently. If I got any sleep, I'd wake up soaked as the ice-chips would melt and then spill into the bed. Those mints you are supposed to stick inside your mouth didn't work for me - I had such a dry mouth they came unstuck after a few minutes. If I did get to sleep I'd often wake up coughing as I'd swallowed one in my sleep!

After a few months of this I developed brain-fog and depression, and totally lost my appetite as a side-effect of sleep deprivation. I dropped 20lbs in 30 days and was living on BOOST protein shakes, as it was the only food I was able to make for myself. It was one of the worst times in my life as I had no clue what was wrong with me or how to fix it.

At this point I decided to take a month off from my job, and during that time I researched my symptoms online - I read some of the forums dedicated to Sjogens, and realized my symptoms almost exactly matched those described there for primary Sjogrens.

I went back to the Rheumatologist and asked about the lip biopsy to diagnose Sjogrens. He said he did not recommend it as it often gave false negative/positive results. He also said it could potentially leave me with a scar inside my lip and there was a risk of nerve damage, which would result in permanent numbness of my lip.

Thankfully, he agreed to treat me for Sjogrens anyway, since I had all the symptoms of primary Sjogrens. He said Sjogrens often takes up to 10 years to show up in bloodwork, and by that time your glands would be totally destroyed, so early treatment was key to preserving what glandular function I had left.

He prescribed me a better saliva-producing pill, Evoxac (the generic is Cervimeline). I now take 4 Evoxac capsules a day, and half a capsule if I wake up in the night. (I create a "half pill" by pulling apart the capsule and dumping out around a half of the white powder inside.)

The Evoxac, along with a sleeping pill prescribed by my primary care doctor, allowed me to finally get some sleep! I get maybe 5-6 hours a night, but it's better than nothing. When I wake up in the morning my mouth is totally dry and my tongue is so dry it looks cracked. I also have a white coating on my tongue. It's worth it however to finally get some sleep!

Dealing With My Dry Mouth... a Daily Battle

As soon as I wake up I moisturize my dry mouth by drinking a full glass of water, then brushing my teeth with a toothpaste that doesn't have the foaming agent sodium lauryl sulfate in it, which can make mouth dryness worse. I tried several different types of toothpaste for dry mouth, including the Sensodyne range, but my favorite is SALIVEA toothpaste, which is super gentle on your mouth and gums. I also use their mouthwash, which is very mild and contains salivary enzymes to help rehydrate the tissues of your mouth.

SALIVEA doesn't contain fluoride, so I follow up by taking a soft dry toothbrush and brushing my teeth all over with a fluoride treatment. There are lots of brands out there, but my favorite is MI Paste Plus, which comes in tasty flavors like melon, vanilla and strawberry. I let the paste sit on my teeth as long as I can so the fluoride really soaks in to strengthen them.

I also (gently!) scrape and then brush my tongue to remove the white film. I use the softest toothbrush I can find and soak it in coconut oil, which has antibacterial properties. I brush my whole tongue with the coconut oil for about 3 minutes (I like Nature's Way premium liquid coconut oil - if you live in CA you can buy it at Sprouts).

Throughout the day and between meals, I suck sugar-free lozenges and candies sweetened with xylitol. It's important to stay hydrated if you have dry mouth, but constantly sipping water is actually counter-productive and can make your mouth drier, as it washes away what little saliva you may manage to produce.

I got sick of sugar-free mints just a couple of months into my 'dry mouth illness', so I was delighted when I discovered the Spry range of sugar-free products, which include flavors like Mixed Berry. I also like the ACT dry mouth lozenges, which come in Honey flavor as well as Mint.

As yet, I have no cavities - when I first read about Sjogrens I was terrified of losing all my teeth, but so far I'm winning the war by simply prioritizing dental hygiene. I try to minimize sugar consumption during the day, and have cut out sugary drinks and caffeine (which makes dry mouth worse). I brush my teeth and tongue first thing in the morning and last thing at night, floss twice daily, and rinse my mouth with water then chew some sugar-free gum after each meal.

If you think this sounds like a lot of work, it IS a lot of work. But once your teeth are gone, they are gone for good, so to me, the time spent is well worth it.

Looking to the Future

I've had unofficial Sjogrens for about a year and a half now. "Dry mouth" sounds like such a trivial condition until you have to live with it and work pretty much around the clock to keep your mouth moisturized! Below are some links to recommended tests and products which might help you with your own dry mouth.

Primary Sjogrens is an "invisible disorder" - meaning friends, family, and even partners may not understand the impact it has on your life. Explaining what you have been going through may help them grasp your situation. You can help them by sharing links to Sjogrens websites, or (depending on their desire to help you) lending them one of the many excellent books available on Sjogrens.

Sorry for the long post, but I hope that my post helps some of you who are in the earlier stages of Sjogrens. I wish you the best of luck!

RESOURCES:

Early Sjogrens test (via Quest Diagnostics - Test code is 93748): https://testdirectory.questdiagnostics.com/test/test-detail/93748/early-sjogrens-syndrome-profile?cc=MASTER

Additional tests for Sjogrens: https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/

Evoxac (Cervimeline) info: https://www.webmd.com/drugs/2/drug-18093/evoxac-oral/details

Salagen (Pilocarpine) info: https://www.webmd.com/drugs/2/drug-10088/salagen-pilocarpine-oral/details

SALIVEA toothpaste and mouthwash: https://www.salivea.com/products

Nature's Way Coconut Oil: https://www.naturesway.com/products/liquid-coconut-oil

MI Paste Plus (Dental fluoride treatment): https://www.dentamart.com/gc-mi-paste-plus-strawberry.html

Spry Xylitol Mints: https://xylitol.org/xylitol-product-spotlight-spry-xylitol-mints/

ACT sugar free honey lozenges: https://www.amazon.com/ACT-Mouth-Lozenges-Honey-Lemon-Count/dp/B07911P26H?th=1

*NOTE: This is a personal post describing my own subjective experience with combatting severe dry mouth, as an undiagnosed Sjogrens patient. I am not sponsored by or affiliated with any of the brands recommended above.

First Symptoms

My first Sjogrens symptom was an odd sensation of dryness in my upper gums, and what I thought was extreme thirst - I realized I was carrying a water bottle everywhere, but figured I was just dehydrated.

After that, things progressed to a tight feeling in my throat, like I had something stuck there. I was constantly coughing to try and relieve the feeling. I put it down to work stress.

My next symptom was dryness of my sinuses. It was winter, and it literally hurt to breathe on my daily walks with my dog.

I realized I had a real problem when I went to my local Swiss-German deli and ordered a plate of cold sliced meats with dry crackers and bread. As I ate I realized my mouth wasn't producing saliva. The food was sticking to my teeth and gums, and swallowing the crackers was impossible without taking a sip of water with each bite.

After this experience, I made an appointment with an Ear/Nose/Throat (ENT) specialist, who put an endoscope up my nose (not the most comfortable procedure!) and said he'd never seen anyone with such dry sinuses.

He prescribed me Salagen (the generic is Pilocarpine), which to my amazement made my mouth produce saliva again for a short time. Almost too much, in fact! It also had the 'fun' side effect of making my nose run, and bringing me out in a full-body flop-sweat. Yuck! I had to cut pieces off each pill with scissors to minimize this effect. But once I found the right dose (half a Salagen pill) it was wonderful to have saliva again, if only for a short time after taking each pill.

Seeking a Diagnosis for my Dry Mouth

The ENT referred me to a Rheumatologist, who did lots of blood tests that came back negative for Sjogrens, including the "Early Sjogrens test". By now my mouth was so dry that I developed severe insomnia - for almost 3 months after my first dryness symptoms I slept maybe 1 or 2 hours a night due to the constant discomfort.

After a few months of this I developed depression/ brain fog and totally lost my appetite as a side-effect of sleep deprivation. I dropped 20lbs in 30 days and was living on BOOST protein shakes, as it was the only food I was able to make for myself. It was one of the worst times in my life as I had no clue what was wrong with me or how to fix it.

At this point I decided to take a month off from my job. During that time I researched my symptoms online - I read some of the forums dedicated to Sjogens, and realized my symptoms matched those described there for primary Sjogrens.

I went back to the Rheumatologist and asked about the lip biopsy to diagnose Sjogrens. He said he did not recommend it as it often gave false negative/positive results. He also said it could leave me with a scar inside my lip and there was a risk of nerve damage, which would result in permanent numbness of my lip.

Thankfully, he agreed to treat me for Sjogrens anyway, since I had all the symptoms. He said Sjogrens often takes up to 10 years to show up in bloodwork tests, and by that time your glands would be totally destroyed, so early treatment was key to preserving what glandular function I had left.

He prescribed me a better saliva-producing pill, Evoxac (the generic is Cervimeline). I now take 4 Evoxac capsules a day, and half a capsule if I wake up in the night. (I create a "half pill" by pulling apart the capsule and dumping out around a half of the powder inside.)

The Evoxac, along with a sleeping pill prescribed by my primary care doctor, allowed me to finally get some sleep! I get maybe 5-6 hours a night, but it's better than nothing. When I wake up in the morning my mouth is totally dry and my tongue is so dry it looks cracked. I also have a white coating on my tongue. It's worth it however to finally get some sleep!

Dealing With My Dry Mouth... a Daily Battle

As soon as I wake up I moisturize my dry mouth by brushing my teeth with a toothpaste that doesn't have the foaming agent sodium lauryl sulfate in it, which can make dryness worse. I tried many different types of toothpaste for dry mouth, but my favorite is SALIVEA toothpaste and mouthwash, which is very mild and contains salivary enzymes to help rehydrate the tissues of your mouth.

SALIVEA doesn't contain fluoride, so I follow up by taking a soft dry toothbrush and brushing my teeth with a fluoride treatment paste. There are lots of brands out there, but my favorite is MI Paste Plus, which comes in tasty flavors like Melon, Vanilla and Strawberry. I let the paste sit on my teeth as long as I can so the fluoride really soaks in to strengthen them.

I also (gently!) scrape and then brush my tongue to remove the white film. I use a soft toothbrush and soak it in coconut oil, which has antibacterial properties. I brush my whole tongue with the coconut oil for about 3 minutes (I like Nature's Way premium liquid coconut oil - if you live in CA you can buy it at Sprouts).

Throughout the day, I suck sugar-free lozenges and mints sweetened with xylitol. I got sick of sugar-free mints just a couple of months into my 'dry mouth illness', so I was delighted when I discovered the Spry range of sugar-free products, which includes flavors like Mixed Berry. I also like the ACT dry mouth lozenges, which come in Honey flavor as well as Mint.

As yet, I have no cavities - when I first read about Sjogrens I was terrified of losing all my teeth, but so far I'm winning the war by prioritizing dental hygiene. I brush my teeth and tongue first thing in the morning and last thing at night, floss twice daily, minimize sugar consumption, and rinse my mouth with water then chew some sugar-free gum after each meal.

If you think this sounds like a lot of work, it IS a lot of work. But once your teeth are gone, they are gone for good, so to me, the time spent is well worth it.

Looking to the Future

I've had undiagnosed Sjogrens for about a year and a half now. "Dry mouth" sounds like such a trivial condition until you have to live with it and work pretty much around the clock to keep your mouth moisturized! Below are some links to Sjogrens tests and dental products which might help you with your own dry mouth.

Primary Sjogrens is unfortunately an "invisible disorder" - meaning friends, family, and partners may not understand the impact it has on your life. Explaining what you are going through may help them grasp your situation. You can also help them by sharing links to Sjogrens websites, or lending them one of the many print books available on Sjogrens.

Sorry for the long post, but I hope that my post helps some of you who are in the earlier stages of Sjogrens. I wish you the best of luck!

RESOURCES:

Early Sjogrens test (via Quest Diagnostics - Test code is 93748): https://testdirectory.questdiagnostics.com/test/test-detail/93748/early-sjogrens-syndrome-profile?cc=MASTER

Additional tests for Sjogrens: https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/

Evoxac (Cervimeline) info: https://www.webmd.com/drugs/2/drug-18093/evoxac-oral/details

Salagen (Pilocarpine) info: https://www.webmd.com/drugs/2/drug-10088/salagen-pilocarpine-oral/details

SALIVEA toothpaste and mouthwash: https://www.salivea.com/products

Nature's Way Coconut Oil: https://www.naturesway.com/products/liquid-coconut-oil

MI Paste Plus (Dental fluoride treatment): https://www.dentamart.com/gc-mi-paste-plus-strawberry.html

Spry Xylitol Mints: https://xylitol.org/xylitol-product-spotlight-spry-xylitol-mints/

ACT sugar free honey lozenges: https://www.amazon.com/ACT-Mouth-Lozenges-Honey-Lemon-Count/dp/B07911P26H?th=1

*NOTE: This is a personal post describing my own subjective experience with combatting severe dry mouth. I am not sponsored by or affiliated with any of the brands recommended above.