Sjogren's Strong

Introduction

Let’s Talk Dry Mouth

Lupe and Brian discuss their experiences with “Dry Mouth” products and some of the things to stay away from. If you are dealing with a dry mouth you do not want to miss this episode.

Let’s Talk Dry Mouth

Lupe:     Welcome to another episode of

Lupe & Brian:     Sjogren’s Strong.

Lupe:     My name is Lupe.

Brian:    And this is Brian.

Lupe:     And today we’re going to be talking about dry mouth.

Brian:    And what we can do to combat dry mouth. What kinds of things do you do to combat your dry mouth?

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Lupe:     I do several things, actually. First of all, I try to stay hydrated.

Brian:    Sip constantly, and stay hydrated.

Lupe:     That’s correct. There’s over the counter med’s that you could do. There’s prescription meds that you can use, lip balms and chap-sticks and toothpaste and mouthwashes.

Brian:    And we’re going to dive into each of these a little more. Starting with sipping constantly and staying hydrated.

Brian:    This might sound silly, but one of the coolest things you can do to help you stay hydrated is get that vessel that you’re happy to carry and that you’re proud of.

Lupe:     That’s the truth. You know why…? I must have like 15 – 20 different kinds of bottles.

Brian:    So we’ve gone through Contigo. We’ve gone through ZUMA. We’ve gone through the awesome giveaways., you find that health fairs, like the FedEx water bottle.

Lupe:     You know they’re all good bottles, the ones that they give you. I mean, but the only thing is, like, for example me, I like my water cold. I’m talking ice cold and only certain brands keep it ice cold all the time. So my favorite is Hydro Flask. If I’m allowed to say that.

Brian:    Hydro Flask, Zuma, some of the Contigo bottles that we’ve used… what you’re looking for is a double walled insulated bottle. So that double wall is going to help keep things either hot or cold, when it’s in there. But, you know, it’s the little things like an easy carry handle. Not that large of a vessel. Maybe a couple of different size of vessels depending on what you’re doing at any given time. Identifying and finding a cool bottle. And I hate to use the word cool, but that meets your specification. Maybe you don’t like ice cold water so it doesn’t matter and just the bottle of water out of the cooler at your local convenience stores fine for you and as it warms up, you really don’t care.

Brian:    She likes her water ice cold. She likes all her beverages, ice cold, except for hot teas.

Lupe:     If they’re supposed to be cold. I like them cold. If they’re supposed to be hot, I like them hot!

Brian:    So once you find that bottle, you’re happy with, cherish it and utilize it and throw some stickers on it, make it your own.

Lupe:     And there are different brands. Some are less expensive than others. Like I said, my favorite is Hydro Flask, but I recently bought one at Walmart. It was only $10 and it works the same as Hydro Flask. And to give you an example, I worked 7 – 4, so I’m at work at 6:45 and at 6:45 I go to the ice dispenser. I put ice and water in my bottle. And if I don’t finish it that day, the next morning when I go to work, it still has ice in it.

Brian:    So some of these double walled bottles are awesome and they’re going to keep your beverage hot or cold, all day long. Hiking; when we go out hiking, even if it’s a city hike, uh, urban hike, if you will, we use some sort of bladder system. So the bladders in the backpack. And we have a hose that runs up over the shoulder so we can sit constantly. They work well and I prefer those over bottles. I like to keep my hands free as much as possible.

Brian:    But it doesn’t matter the vessel, doesn’t matter the brand, whatever works for you. But identify it. It seems that if it’s just a bottle of water, It’s easy to go, oh, I’ll just stop and get one when I get gas. Or I’ll just stop and grab one on the way. But if we carry that bottle with us… And make it a game, how many bottles can I drink today or can I finish this bottle by this mile marker. And challenge yourself, playing those games helps me. I’m a very competitive person. So that helps me accomplish those goals to consume.

Lupe:     I’ve been trying really hard not to put Gatorade in my water, because again, a lot of sugar. I find… one time I was at a car wash and Brian, he bought me a “Life Water” and that water, I prefer it room temperature and to me it tastes like clouds. I don’t know how to explain it. It just tastes like clouds.

Brian:    And what Life Water is, it’s a Ph balance. There’s added minerals to it. Um, it’s a higher end water, so it’s not something we consume daily. But for recovery, for example, if we’re coming back off of a long hike, we’ll stop and get it. And you can pretty much find it in any convenience store out here in southern California. It, again, being Ph balanced with added minerals, it not only taste great, it has a great mouth feel, it helps with recovery.

Brian:    So something else that can help combat dry mouth are prescription meds. And the two most popular right now, our Salagen and Evoxac, and I’m probably pronouncing that wrong, so I’m going to spell it out E V O X A C, Evo-Zach, maybe?

Brian:    You’ve taken Salagen. And why don’t you talk about it.

Lupe:     Salagen was prescribed to me and I took it for a couple of month, probably, but for me it had some side effects. It made me jittery, like I just drank a whole bottle of Monster and that is not good for me. It gave me hot flashes. I was sweating and hot and it just was not a good med for me. Also, it does give you saliva but it gives you like a gush of saliva for about maybe 10 minutes. And then nothing. That’s how it was for me. I don’t know, it might be different for other people.

Brian:    Yeah and we want to stress. That that was his experience with it. We encourage you to try, it if it’s prescribed, and if you have different results, please share them with us. But she didn’t have a positive experience with Salagen and she hasn’t tried the Evoxac yet, so…

Lupe:     It was prescribed to me, but I never filled it because I was afraid of the same side effects. So I just, I didn’t fill it.

Brian:    Maybe we’ll try that in the future and can report back on it. If not in the meantime, if you’ve tried it, please let us know?

Lupe:     There are also over the counter remedies like gums, lozenges, oral sprays. I most recently, actually, I just came from Walmart and I bought… they’re called TheraBreath Dry Mouth Lozenges, and they’re really cool because they come in individual wrappers so you could stick them in your purse and your pocket anywhere and they work.

Brian:    I tried one and it did force a saliva production. The flavor is strong. I don’t want to say overwhelming – strong. The texture was nice but it left like an abrasive feeling in my mouth. Like I just eaten a bunch of dry crackers, I don’t know, abrasive. It feels like it’s raw, but it’s not. So I’m not sure what ingredient in that might’ve caused that. But they have Xylitol in them and one of the coolest things is on the front of the box it states works or it’s free. And again this was an over the counter remedy that she just found today. So, we don’t have a lot of experience with it other than a one-time use before recording this and they are sugar free, which is another great benefit.

Lupe:     But so far I like them and I’m going to continue using them because they did help me produce a lot of saliva. To the point that I had to take it out of my mouth to talk. Because I’m not used to producing saliva. So I kind of feel like I’m choking, if that makes sense.

Lupe:     I have tried other brands like ACT and the mouth feel to me feels sugary, like when I eat candy or if I have a lozenge or chew gum that has sugar in it. That’s the way it leaves my mouth feeling. Even though it says that it’s sugar free, there’s something in it that, it does help you produce saliva. But to me, it leaves my mouth a little sticky so I don’t prefer it. So, so far, I really liked these ones that I just got, TheraBreath, I’m giving it a thumbs up.

Brian:    And we’re going to do our best to throw links to these products in the show notes.

Brian:    And again, full disclaimer, none of these are sponsoring the show. This is just stuff that we’ve tried. It’s not a recommendation. We’re letting you know what we’ve tried and what experience she’s had and I’ve had with the product. But again, it’s not an endorsement by any means.

Lupe:     I also chew gum on occasion, not all the time because I get tired of chewing gum and keeping a gum in my mouth. But my favorite brand is Trident with Xylitol and that’s spelled x y l i t o l. And that helps you produce saliva, yes?

Brian:    It’s in the ACT Dry Mouth lozenges. It’s in the TheraBreath lozenges we just spoke of. It appears to be in a lot, but I have not done research on Xylitol and or what it does or doesn’t do, but it seems to be a common ingredient.

Lupe:     But the Doc has told me to buy gum, sugar free gum, with Xylitol. So it must be a good thing.

Brian:    Safe assumption.

Lupe:     Yeah.

Brian:    In addition to the lozenges, there’s a lot of over the counter oral rinses for dry mouth now, as well. But one thing we want to caution you, if you haven’t heard this from your doc, any product you’re going to put in your mouth that has alcohol in it to include alcohol…. you shouldn’t have it if you’re combating dry mouth. Because alcohol does dehydrate you and it evaporates really fast and it will dry your mouth out really fast. So steer clear, turn that bottle around and read the ingredients. And if it has alcohol, it wouldn’t be recommended.

Lupe:     So for example, toothpaste, I’m sure everybody, mostly, everybody has heard of Biotene and they recommend this for dry mouth. And it’s awesome. So the toothpaste, the mouthwash, the oral spray, they are awesome products.

Lupe:     So besides Biotene, I also use Moisyn and I kind of alternate. So, I have a little sprayer in my purse and I kind of alternate every other week between Moisyn and Biotene. And also when we’re hiking, I kind of alternate, as well.

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Brian:    And to learn more about Moisyn, we did whole episode with Leo from Moisyn he explains and talks about his product very well so you can go back a few episodes and find that episode, if you’d like to know more.

Lupe:     Anything else from me doesn’t really work because it has alcohol and it just dries my mouth. To the point where, one time I had a dentist appointment and I didn’t put the Biotene in my purse, but I had an old toothpaste, not old, it just wasn’t Biotene, at work and I brushed my teeth and the Doc, she noticed that it kind of peeled my mouth from the inside. If I’m saying that correctly.

Lupe:     So, if you have been listening to the show from the beginning, you know, that I go to the dentist a lot because I’m a teeth freak. And a friend of mine, she was selling toothpaste to whiten your teeth and I actually did buy one. And I just want to talk about it because I did use it for a couple of days and it really dried my mouth out. Because I didn’t read the instructions. Not the instructions, but the ingredients. And it must have a lot of alcohol. After a few uses, my mouth was really dry and I didn’t know what it was until, when I had to brush my teeth again, light bulb moment and I realized it was a toothpaste. So, you know, I like having white teeth, but this one was a little harsh, so be careful.

Brian:    And something else about toothpaste. A lot of toothpaste, have an ingredient… its either listed as SLS or Sodium Lauryl Sulfate. And what this ingredient does is it produces the foam that you see and feel in your mouth. From what research I’ve done, it’s there to have a feel and visual effect to make you think it’s doing something, and it really has no positive benefit. I’ve read that it’s intent is a special effect and SLS will actually dehydrate your mouth, as well. So, if a tooth paste has SLS or Sodium Lauryl Sulfate in it, you should steer clear from it.

Lupe:     Now, dumb question, maybe, is it going to be listed as SLS or that other word you said?

Brian:    It might be listed as both. It should be spelled out as Sodium Lauryl Sulfate.

Lupe:     That’s good to know. So, they’re not all going to say, contains alcohol. It might have that too. And that’s bad.

Brian:    Or could have both, right?

Lupe:     Yeah.

Brian:    That tooth whitening toothpaste you were talking about actually does have SLS in it, so…

Lupe:     Because I’ve used those whitening strips from Crest or I don’t know, I think that’s the brand and those aren’t as harsh. They just take a little bit longer. But, you know, I don’t feel that they’re as harsh. So, I’m just going to stick to those.

Brian:    So have we covered all the over the counter?

Lupe:     Um, I wanted to talk about Chap Stick and lip balm.

Brian:    Lip Balm

Lupe:     I use a lot of Chap Stick, that’s the actual brand. And my favorite is Cherry and Strawberry. I don’t think because of the flavor because it doesn’t really taste like anything. But it gives me a little color on my lips. Because I really don’t wear lipstick anymore because my body just absorbs it. So, you know, using cherry or strawberry gives me a little… my lips are a little pinkish, so I liked that.

Lupe:     I liked Vaseline Lip Therapy. And I recently discovered O’Keeffe’s Lip Repair. It’s kind of glides right on. I don’t know how to explain it.

Brian:    It’s like Clouds.

Lupe:     No!

Brian:    It’s got a really good feel to it. A little thicker than other products like Chapstick. For example, I love Blistex during the winter because it’s thinner than Chapstick. Where Chapstick is a denser wax. And then during the summer, it’s typically hot out and when you go to apply Blistex, it just smears all over your lips because it’s got a thinner consistency to it.

Brian:    So, this, O’Keeffe’s is actually thicker than a Chapstick is and it’s. And it’s got a really good feel to it. It goes on really nice. It seems to fill in any cracks you might have in your lips, But it seems to be a good product, but it’s something she’s just starting to try as well, so I’m sure we’ll circle back on this in a few weeks

Lupe:     And it says guaranteed relief for extremely dry, cracked lips. So far it’s working. I really like it, except it’s a little pricey. I think one was $4.

Brian:    And one thing to keep in mind that dry lips… if you find yourself licking your lips, you’re dehydrated and start sipping. And it’s hard to come back from dehydration, especially if you have to remain active. So it’s important to recognize these signs and symptoms. And that sign or symptom would be if you’re licking your lips a lot, they’re dry, so get some product on them and start sipping some water.

Lupe:     I do want to circle back to prescription meds. My Doc, about a year ago, he prescribed to me something called NuMoisyn Lozenges.

Brian:    They’re tiny.

Lupe:     Yeah. I was trying to do it with my fingers. They’re really tiny. But they’re very citrusy and you produce so much saliva. And they’re really good, but I do remember he said that they were discontinued in the U.S. Last week, I went to, you know, I’m searching for a new rheumatologist, and I asked her about these. And she called in a prescription to the pharmacy. And then the pharmacist called and said, hey, these are over the counter, but I haven’t been able to find them, so. But they’re really awesome. They are called NuMoisyn, N U M O I S Y N.

Brian:    And we did find them on Walmart.com. We could not find them on Amazon.

Brian:    I want to bring up the point that hospitals and clinics have policies and procedures and guidelines. And sometimes it’s easier for a doctor to say they don’t make that anymore, then explain to a patient that they cannot prescribe it anymore.

Brian:    And it’s really hard for a patient to hear that the med that they feel works for them really well, isn’t available through that doctor anymore. And wrapping your head around that is, can be a challenge. But they do have policies and procedures and guidelines so it’s easier to say they don’t make it and that typically ends the conversation and you move on to a different med. But do your research and point blank ask the doctor do they not make it or are you no longer allowed to prescribe it? And that might alleviate some of the frustration about finding this product like NuMoisyn still being available. You know, she’s gone without for quite some time.

Brian:    So, that about wraps up the remedies that we’ve implemented. And actually we discussed some remedies in our “Dry Eyes” episode that will work or help for dry mouth, as well.

Brian:    For example, the humidifiers. If it’s really dry air, where you are, whatever time of the year… run some humidifiers in the house. You put that moisture in the air and it will help you overall. Whether it be eyes, ears, nose, mouth, skin, it will help. So that’s something else that, you know, twofold, eyes and mouth that we didn’t really talk about here. But uh, you can go back to the “Dry Eyes” episode, take from it what you may.

Lupe:     We hope some of this information was helpful. One thing to put into place is turning the box over and looking at the ingredients. With Google, It’s easy to research ingredients these days.

Lupe:     We invite you to join our Facebook group “Living Sjogren’s Strong” to engage in meaningful and helpful discussions about these products and products you’ve been successful with.

Lupe:     And remember, like Lorena said, Sjogren’s is going to be with us forever. We have to treat it like it’s our best friend and learn to coexist with it.

Lupe:     Until next time, SIP CONSTANTLY AND STAY HYDRATED.

Links

Living Sjogren’s Strong

Contigo

HydroFlask

HydroFlask

O’Keeffe’s

Moisyn affiliate link

Biotene

TheraBreath

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