Dry Mouth advice please : Hello, has... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Dry Mouth advice please

Duck33
Duck33

Hello, has anyone got any recommendations for products that help tackle a dry mouth, especially during the night (I have CREST). I've tried Biotene toothpaste but it hasn't helped much. Thanks very much.

44 Replies
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I just got a prescription for salagen. Hoping it helps, biotene didn't help me.

Duck33
Duck33 in reply to Atu8

Thanks so much for replying. I'll look into that. And hope it helps you. Thanks again.

I get prescrip glandosane:the only artificial saliva we could find without xylitol (I can’t tolerate xylitol). At regular intervals, I spray it in my mouth twice & sort force it around like a mouth wash...mainly, I need it at night, cause during the day I hydrate with water. Once I got used to it, glandosane has been a lifesaver...I use the natural flavour...I now like it so much, I bought a spare on amazon so I never run out between prescriptions

Duck33
Duck33 in reply to Barnclown

Thanks very much for replying. I'll check that one out. I've been using an over-the-counter spray from Boots, if I wake in the night. It helps but doesn't seem to last long. Great to hear how helpful Glandosane has been. I'll definitely look into that. Thanks again.

Barnclown
Barnclown in reply to Duck33

Good luck. Maybe cause I have quite severe Sjogrens in my mix, nine of my dryness issues ever decrease in severity..,if anything they just get worse over the decades...so I kinda accept that all the treatments I use for dryness in all my ‘holes’ 😉 are a constant, repetitive 24/7/12 routine thing...eg am 67 & get up at least 2x each night for loo, always with a very dry mouth too: so every time I also give myself a couple of glandosane sprays..it is what it is 🤷🏼‍♀️🙄🍀❤️

Duck33
Duck33 in reply to Barnclown

Oh, so sorry to hear that. You have it much worse than me. Really appreciate you sharing what helps you. Really kind of you. And take care of yourself.

Barnclown
Barnclown in reply to Duck33

You’re v welcome...am glad you post: you’ve got such great replies! 👍✌️🤞❣️

Duck33
Duck33 in reply to Barnclown

Aw, yeah, definitely. Thanks again! Much appreciated :)

I use oralieve gel - put a squirt in my mouth before going to bed and spread it around, keep tube on the bedside table and have another squirt if needed. Use it during the day too.

Duck33
Duck33 in reply to Poppy221

Thanks so much. I'll definitely check it out. I haven't heard of this one, but I'll go look for it. Thanks again.

foxglove
foxglove in reply to Duck33

Definitely try oralieve gel, have tried many and find this one works!!!

Duck33
Duck33 in reply to foxglove

Thanks so much for the recommendation. I'll definitely try it out.

Hi there, unfortunately there is no real easy solution to dry mouth, and different things work for different people. Here are a number of things that I have been told over the years...

1. Take sips rather than ‘glugs’ of water and swill and spit rather than drink, or only drink small amounts

2. Chew sugar-free chewing gum

3. Try using saliva replacements, also gels, lozenges, sprays (glandosane) or pastilles (Salivex pastilles)

. Biotene do a gel.

4. Saliva stimulation tablets can help

, these may need prescribing by a Consultant Rheumatologist, rather than your GP e.g. pilocarpine

5. Take a spoonful of natural sugar free Greek yoghurt before you go to bed

6. Review your medication list with your doctor as some medicines you take may worsen your dry mouth

, this is especially true of some pain meds, and antidepressants

7. Try Xylimelts (obviously this is not for you if you don't tolerate Xylitol, but for other people these are a good idea)

8. Try to breathe at all times through your nose. Many people are mouth breathers, especially at night, and this will guarantee you wake with a dry mouth, even if you don't have an underlying medical condition.

9. Try using a humidifier in the bedroom to moisten the air (or put a tray/bowl of water need a radiator for a DIY effect)

Hoping that maybe one or a few of these will help

all my best

Lucy xxx

Duck33
Duck33 in reply to LucyJean

Hi Lucy, thanks so much for all the ideas. I really appreciate it. I'll definitely give some of them a go, thanks. It's such a frustrating side effect of this condition, isn't it. During the day isn't so bad as I keep a bottle of water by my side and just keep sipping it. But the night time is definitely harder. Not to worry. I've got some ideas now on how to tackle it. Thanks again for your help. xx

Hi, I have pilocarpine on prescription which helps but my consultant has just recommended bioXtra products. I’ve got the gel to use but there’s also a liquid, toothpaste & mouthwash available too in this brand.

Hope you get some relief soon 😀

Duck33
Duck33 in reply to MoominMomma

Thanks so much. I've added the bioXtra products to my list to check out. Thanks again for the recommendations. :)

My Periodontist suggested putting coconut oil on my gums and teeth when I go to bed. I've tried it and it works better than everything else I've tried. Be extremely careful of any product that contains Xylitol if you have a dog. Xylitol is extremely poisonous to dogs. One piece of Orbit sugarless gum that my neighbor accidentally dropped in my yard killed my Keeshond.

Duck33
Duck33 in reply to Dargomom

Oh that's awful. I'm so sorry to hear that. Thanks for the warning.

Coconut oil sounds very interesting; great to try something natural. Thanks for the advice.

i hope you are not in pain in case you are try (wild lettuce extract) ebay has it ok. works great hugs, kisses, prayers for a better tomorrow love julieanna.

Thanks so much for the good wishes. And to you, also. And thanks for the recommendation. I really appreciate it xx

Hi,

I have tried different products including the Glandisane spray. It was OK but not brilliant for me.

I talked to my consultant as I have Systemic Sclerosis & prior to this illness I never had any issues.

She asked the Dr to prescribe saliva stimulating tablets. These have really helped me as the tablet dissolves slowly in the mouth & for me lasted longer. I still wake up 3/4 times a day so pop another tablet in my mouth.

It is a pain having the dry mouth but I think it's something we have to live with on top of everything else we endure.

I hope you get some relief soon. Xx

Thanks so much for your message. Yeah, I agree, it's another bad part of this condition. Thanks for the recommendation of the saliva tablets. I'll ask my GP about them. Definitely worth exploring. Thanks again and take care xx

Duck 33,

Thanks so much for asking this question... I to have Sjorgens, my mouth is so dry i have to have a drink with anything i eat otherwise its hard to totally swallow. I don't know if its my imagination but food tastes so less enjoyable ;-( I take salagen and use biotene mouthwash but i will try the other remedies that have been mentioned .... The dryness feels like it goes all the way down my throat and most mornings i wake up with a sore throat ... Stay well everyone and thanks for the advise .. x

Duck33
Duck33 in reply to catkar

Thanks so much for your reply. Dry mouth really is awful. And added together with reflux, the pleasure of food is definitely reduced. But so grateful for all the great advice and recommendations here. Lots of things to try. x

You can also get Biotene mouth gel which I find helps me.

Duck33
Duck33 in reply to 136824

Thanks for the recommendation... I'll definitely give the gel a go. Thanks again.

Hi.

Sorry for the delayed reply! I’ve read what everyone has said and have tried them all over the years. I have severe shortens and systemic sclerosis amongst other conditions and take quite a lot of medication the double whammy for e is dry mouth and awful taste!on trawling the internet I came across these on Amazon:

The Breath Co. Mouth Wetting Dry Mouth Lozenges. 100 wrapped pieces. Citrus&Lemon flavour. £12.54

They work immediately you pop them into your mouth and the effects last, for me, much longer than the Salivex pastilles. They may seem expensive but I weighed that up against my dry mouth and there was no question! The company also have other products advertised but I haven’t tried any others as yet. X

Duck33
Duck33 in reply to kimmo

Thanks so much! I'll definitely check them out, they sound great. Really appreciate the recommendation. Take care and thanks again. x

have you asked the dentist, doctor, could be a medication side effect. i have it too. maybe go on line see if anything is out there i have crest the side effects of meds are terrible stopped taking it. wild lettuce extract for pain helps me a lot. ebay. hope this helps youhugs, kisses for a better day love julie

Thanks Julie, I'll check that out. All the best to you xx

My dentist prescribed Colgate Duraphat Toothpaste which I use before bed. I also find Biotene Moisturising Mouth Wash helpful. Xylotol Melts work for me, really well. I do also chew some gum if I am really dry or I use Orelieve Gel which works very well.

Duck33
Duck33 in reply to amc282

Thanks so much for the ideas. My dentist isn't doing appointments at the moment, but I'll definitely ask about the toothpaste when he's back up and running. Thanks so much! And also for the other recommendations. Really grateful, thanks.

amc282
amc282 in reply to Duck33

No worries. It was actually my Rheumy who told me about the toothpaste but it must be prescribed by your dentist. There must be people in the dentist office? Even if they aren’t totally up and running. Get the Rheumy to write a letter directly to the dentist and your GP requesting it. Goodluck

Duck33
Duck33 in reply to amc282

Good thought, thanks. I'll give the dentist a ring tomorrow. They're still doing emergencies, so there are staff in there. Thanks so much! :)

Hi my name is Sylvie, I haven't been posting for awhile but I saw your post about dry mouth. This is something I do suffer from, I produced zero saliva when I did the test for Sjogren's. I have tried countless products, and I did change my toothpaste to Oral B which has helped, even my dentist said Im not as dry as usual. My dentist like some other professionals have not found any of the products thus far on the market helpful for dry mouth. I have found that if I drink just half a glass of wine, I will get an even drier mouth, so I avoid. It is trial and error. Recently my Sjogren's Group were offered some products free for people to try. These are the two products but I haven't tried them. Also I thought that you might like to search this YouTube Sjogren's European Conference as they talk about Dry mouth and have borne out what my dentists opinion. Hope you don't feel there isn't any hope. I have used these sweets on some occasions when it's been so bad but they are expensive and are only a temporary relief. Quite honestly, you are just as well off with the herbal sugar free sweets from the supermarkets or Holland and Barrett.

HAp+ they come in different flavours.

dentocare.co.uk/oranurse-un...

youtube.com/watch?v=jXPTwr9...

youtube.com/watch?v=jXPTwr9...

I hope you find some relief to your dry mouth.

Best wishes,

Sylvie

Duck33
Duck33 in reply to SylvieJ

Hi Sylvie, thanks so much for your message and all the information. I'll definitely watch the vids, thanks. It really is a case of trial and error, I guess. My reflux has flared a bit lately, which isn't helping the dry mouth. But not to worry. I stay hopeful. I'm always up for trying absolutely anything. I keep hoping that with all the medical research buzzing around the world with the hunt for a covid vaccine, they might accidentally stumble across something that could help our conditions. You never know. :) Thanks again for your kindness. xx

SylvieJ
SylvieJ in reply to Duck33

Anything else I can help you with I will try. I too get the acid reflux and after having a camera down the throat, which they found nothing untoward. I am glad they didn't but I was fortunate that the Consultant who spoke to me to give me my results said he also suffered from acid reflux. He suggested to me that the strongest of the Gaviscon might work, or failing that he takes a spoonful of Manuka Honey if you can bare swelling a teaspoonful. All the great things we enjoy seem to be the things that set off our problems unfortunately :( Still we just have to try and find ways that make our living with it a little more comfortable. Keep your chin up.

Best regards, Sylvie

Duck33
Duck33 in reply to SylvieJ

Thanks so much Sylvie. It's lovely to be in touch with yourself, and the other friends on here. It really makes a huge difference to me to hear about other people's experiences. Our conditions can be quite lonely, as not many people seem to have heard of them. Reflux is awful. I, too, had the camera thing last year, and Gaviscon has been brilliant. I shall try the manuka honey, as my reflux is particularly bad at the moment, after being relatively good for quite a few months. But hopefully it'll settle again soon. Like you say, we need to stay positive. I remain always hopeful. Thanks again for being in touch. Take care xx

MoominMomma
MoominMomma in reply to Duck33

Hi, I have a hiatus hernia and suffer from acid reflux (amongst a list of other things!) and my gastroenterologist recommended Gaviscon Advance, which I now get on repeat prescription. Can’t live without it..

Omeprazole (on prescription) taken daily works wonders for me

Duck33
Duck33 in reply to Kilncadzow

Thanks so much for replying. Really good to hear the Omeprazole helps. So grateful for all the suggestions on here. Thanks again.

Duck33
Duck33 in reply to MoominMomma

Hi, thanks so much for the message. Sorry to hear about the HH. I too have one, which definitely doesn't help with the reflux. I agree, Gaviscon Advance is brilliant! Thanks again.

Try Biotene gel. I have had this problem for over 40 years, and this is the only thing that has worked for me. It is available on the internet.

Duck33
Duck33 in reply to cakedecorator

Hi, thanks so much for the recommendation. I've ordered some to try. Thanks again.

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