Mouth Dryness: I have Schleroderma and... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Mouth Dryness

coser profile image
coser

I have Schleroderma and I experience extreme dryness in my mouth daily and at night it is off the scale and it keeps me from sleeping. The doctors in Spain offered me medication which cost almost a weeks pension for 20 pills and I would need to take 2 per day!!! When I took it, it helped the dry mouth but, gave me hot flushes that lasted up to 30 minutes at a time. With the summer´s here at more than 40 degrees on times in August I can´t afford to have hot flushes. So I use really good lip ointment which helps marginally.

17 Replies

Hi Coser ,

I have exactly the same problem ... I have Scleroderma , and Sjorgrens . I have found that using Biotene Mouthwash and a Biotene gel that you put a small amount on my tongue when i go to bed has helped , (i get them from Boots )i also put a lip moisturiser on.

I have Crest syndrome and it seems the gift that keeps on giving..

I hope you find a solution that helps ...

Take care

Sending love Cat x

coser profile image
coser in reply to catkar

Thank you for your reply. I wish I had access to boots here in Spain. It is illegal for liquids to be sent in the post abroad unfortunately but, if you could give me more information about the product, its active ingredients and perhaps the manufacturer it may help the Spanish pharmacy to source something similar. Thank you so much for your reply. This is my first venture into using a site that deals with Scleroderma and other conditions the like. It is good to hear a voice that echo´s mine, if that makes sense. Sending love. Coser x

282523 profile image
282523 in reply to coser

I have overlap of Sjögren’s and Scleroderma and, despite having the former for many year - the dry mouth only arrived in full force last year just as I was newly diagnosed with systemic sclerosis.

It’s the most horrible feeling and has put me off my appetite to such an extent that I’m now being tested for gastroparesis. As well as Pilocarpine/ Salagen (which it sounds like you’re on already) I’m prescribed a gel called Oralieve. It’s literally the only thing that gives me some relief. That said many swear by Xlimelts and there are dry tablets you lodge in your mouth to slowly dissolve. They didn’t do much and added to my GI issues but many swear by them so maybe worth a try 😊

Hello Coser - sorry to hear you are suffering. I too have Sjogrens and the dry mouth thing (along with Raynaud's and system sclerosis etc). Sometimes I wake up and feel like my teeth are stuck to the inside of my face and my tongue feels all strange - dry and scratchy like a cat's tongue. I find the best relief is keeping a bottle of water handy - sometimes I'll suck a Strepsil (sore throat sweets) and then I go back to sleep again. I also get dry eyes - they get quite sore and now I can't wear eye makeup, as soon as it touches my skin a get horrendous itching and have to wash it off so I've given up trying. I'm afraid any attempt at looking glamorous is hopeless. I find that as time goes by the Sjogrens episodes get more frequent. I remember a few years back I was told I had Sjogrens before I even got the symptoms. Over the years they have become more frequent and are now a daily/nightly visitation. What fun. Chin up everyone and I'm sending you all a hug.

🥰🥰

coser profile image
coser in reply to Betsie

Hi Betsie, I know that feeling well, teeth are stuck to the inside of the mouth and tongue feels dry and numb. I too always have a bottle of water to swill around the inside of my mouth frequently. I cannot put make up on either. I get a sore red rash that is itchy. I don´t bother trying to look glamorous anymore. Thankfully, in the summer here, I can wear sunglasses and lip balm and look almost normal lol. Sending you much love

Hi coser

I suffer from dry mouth and was recommended to use lemons to stimulate my saliva gland. I found it does help me, I drink water with slices of lemon in and have an endless supply of sherbet lemons and lemon boiled sweets. The down side was my dentist was not impressed with my new sweetie habit.

Take care

E x

coser profile image
coser in reply to Elle-St-Joan

Thank you Elle-St-Joan, That sounds like something worth a try. Though Sherbet Lemons I might give a miss. Lemons grow profusely here in Spain so I will never be in short supply. Thanks again and take care x

It’s horrible isn’t it? I always keep water by the bed, obviously. Most of the dry mouthwashes are based on glycerine which you can dilute and ‘swish’ rinse before bed, and I always keep small sweets like Tic-tacs by the bed. You can get the Biotene range on Amazon, but I don’t find that very useful when the dry-mouth is really bad. Your dentist should have something which would help too.

coser profile image
coser in reply to Morganalefaye

Thank you Morganalefaye, I am due to visit the dentist in April so I will ask his advice

Hi my hygienist advised using coconut oil because as well as helping the dryness it is anti bacterial which also helps. She said take a small spoonful and let it dissolve in your mouth. I hope this helps along with the other things you are doing.

coser profile image
coser in reply to Patr1c1a

Thank you Patr1c1a, I have coconut oil in my cupboard so I will give it a go.

Hello, firstly can I just say thank you to all the repliers for their useful answers.

I have had Primary Rayauds for about 15 years. I have suffered with a dry mouth for ages which was put down to the medication amitriptyline. However I swapped to a new medication about 18 months ago and although the dry mouth got a bit better it didn't go away and I was constantly suffering with a sore throat.

There are two things that have helped relieve the symptons somewhat:

(a) a toothpaste Colgate® Duraphat® available in at least 2 strenths 5000ppm fluoride toothpaste and 2800 - this helps protect your teeth from a dry mouth and I find it makes my mouth feel happier.

(b) I use sodium chromoglycate eye drops and a beclometasone dipropionate nasal spray (mines called Beconase) for all year round "hayfever". My Doctor suggested that I use them after I have cleaned my teeth, and put in extra eye drops, to make sure it all came into contact with the back of my throat (everything is connected back there!) for as long as possible. This has been especially helpful with the dryness and soreness in the back of my mouth and in my throat and it also helps the roof of my mouth as well.

I hope you are able to find relief quickly, N. xx

Hi,

I suffer too!

I take Saliva Stimulating tablets as recommended by my consultant. One of the brands given was Saliva which are sugar free.

I keep the tablets under my pillow & take one when I wake with a dry mouth. Pop a tablet in your mouth & let it dissolve slowly. They really help.

I tried taking a spoonful of yogurt before bedtime & other natural ideas but I find the tablets suit me best.

I was prescribed a spray ( Glandosane) but found this difficult to use with my secondary raynauld.

I lived in Spain for a while & found the chemists very helpful. They should be able to find a suitable product for you & refer you back to your Dr for a prescription if needed.

Enjoy the warmer weather as it really aids our disease. Xx

Salivix is the product name, sorry the spelling was changed

Hello, and thank you I will ask my pharmacy if they do Salivix or something similar. I wish you good health

I’m so sorry I used to experience this as well. I have systemic scleroderma but found the right treatment 2 years ago and I’m doing so much better I would say about 70 percent! Please go to roadback.org to learn about the antibiotic protocol treatment and there’s a book you can take to your rheumatologist called scleroderma the proven therapy that can save your life. Also another tip for dry mouth make sure you have a cool mist humidifier in your room at night. And some of that dry mouth gel at pharmacy and maybe some coconut oil or aloe Vera natural treatments.

coser profile image
coser in reply to Bec9680

Thank you Bec9680 I am checking roadback.org out now, and thank you so much for all the other tips. Very helpful

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