I'm not sure why i'm asking or what i'm asking , but more recently My dry mouth is on a permanent flare up . Its takes ages to eat food as there is not enough saliva to break the food down, the trouble with always having water at hand is the relief is momentary as the dryness comes from deep inside ... But lately every time i eat something my tongue gets really sore and i have a small pimple in various different areas... I do the usual stiff , biotene, picrafil , water and mints which specifically supposed to help with dry mouth , but nothing has a significant effect . My gums have now receded so badly my bottom teeth are wobbly ....Can anyone suggest anything to help please , i feel at my wits end , I was diagnosed with Crest 5 years ago , but looking back i have probably had it a lot longer without knowing ...
Thank you for reading ..
Cat xx
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catkar
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Hello I’m new here and have nothing much to offer in advice but lots sympathy/ empathy having same combination of ctds as you. My mouth tastes so salty? Oralieve gel works best for temporary relief if I hold in my mouth and allow it to get into all the corners etc. Also use xylimelts and got a very effective thing for tongue ulcers from Boots which is a Bongella plaster stick you smear on ulcerated area and boy does it burn😖 - but it has really helped me overnight or even during day with the pain on my tongue. I think for me the progressing problem is maybe more reflux than sjogrens dryness now as my tongue not sticking to roof anymore but saltiness overload still powerful got gastro issues all the way down.
Hello there, not sure I can add much, but wanted to say that I understand and definitely sympathise. I really feel for you. Wish I could recommend something that really helps. I've started using unflavoured Xylimelts, like OldTed recommends. I think they help with the acid reflux, too, as I read somewhere that a lack of saliva makes the acid worse, as saliva neutralises the acid. I know they don't last that long, but they do make a difference for me, especially when sitting watching TV in the evenings. I've recently tried to cut back on gluten, too. That seems to have helped a bit - I try not to eat wheat products in the afternoon and onwards and I'm trying gluten free bread at lunchtime. I've also gone onto lactose-free milk. These changes along with all the usual obvious non-acid diet changes, so no citrus, caffeine, alcohol etc, seem to be helping with dry mouth and acid for now, but I suspect it'll all flare up again sometime soon. Really sorry you're having such a bad time. I hope it settles down a bit soon. Take care.
Same problem here. Mouth so dry makes eating and talking difficult not to mention sore mouth frequent ulcers and receding gums. My Consultant has started me on Pilocarpine and it is a game changer. Mouth back to normal (ish). Have been on it for 6 weeks. Its lovely not waking up with your tongue glued to the top of your mouth, eating something dry and not choking and talking without chewing gum! Not sure it works for everyone but certainly worth a try. Good luck x
So sorry you are going through this. I only have one suggestion and it comes from my days calling on brick layers. One of my customers had no saliva glands due to cancer. I made sure that he had water (not soda or pop) for his dry mouth. He ALWAYS chewed gum for the same reason. This may be too simple, but thought just in case I would share it with you. God Bless You!
Hi, really sorry to hear all that’s going on for you. I have systemic sclerosis and also have very dry mouth. Since early last year I was getting repeated mouth ulcers, sore tongue and sore sides of mouth. Dentist said I was grinding my teeth so went through the trauma (no exaggeration) of getting mould of bottom teeth done to then have a guard made to wear at night for my supposed teeth grinding.Persevered with we guard throughout the year alongside bonjela and Orajel. Just into this new year, I was waking up every day to a new ulcer/ sore etc. and it was really getting me down. Told my consultant of this and she arranged swabs. It turned out I had oral thrush! Was put on medication (mouth drops) and since then, mouth still a bit dry but all sores etc. gone. Was really annoyed dentist didn’t pick up on this and am currently looking for a dentist sympathetic and knowledgeable to a patient who has systemic sclerosis. Any help there? I live NE Scotland. This may well not be what’s wrong with you but just thought I would let you know my story. Best wishes x
Hi, sorry that you have this horrible condition. You may well have a thrush infection (candida) in your mouth. It commonly happens in people with dry mouth. I had this a few months ago and it drove me crazy with the increased dicomfort. It is possible to have thrush without showing "classic" white patches in your mouth, as I found out. You can ask your GP or practice nurse for Nystatin prescription, which is an effective treatment. A rheumatologist told me he recommends treatment routinely every 6 months. You can get Daktarin gel OTC but it is expensive and I don't think it's as good. Taking a treatment certainly worth a try since the treatment is pretty harmless. Good luck!
Hello … I’ve read your post and really empathise with you. I have had scleroderma since 1996, turning to systemic sclerosis in 2010, and that’s when my real problems began. I’m now in a position where I have lost most of my teeth and my dentist has referred me to the restorative dental hospital inManchester as she thought it was related to my SSc. It’s not, it is the Sjogrens that has weakened the ligaments around my teeth so they are so wobbly they eventually fall out. I tried everything to solve my dry mouth problems but nothing really worked. I suppose what I’m trying to say is get a dentist that is willing to learn, or already knows, about your condition and perhaps restorative work can be carried out before it becomes a serious issue. I now have to have a metal plate fitted to my remaining teeth, top and bottom, in an effort to keep them. I’m not looking forward to this at all; I’ve had five appointments so far for impressions and my teeth felt as if they were going to fall out after each appointment. I wish you all the luck but you may have to push for answers. I have a private dentist and was very lucky 🥰
Thank you for your reply , It is soul destroying when the loosening of teeth is NOT due to poor hygiene.... I always feel ashamed when i go to the dentist as if they are thinking it was preventable .... Good luck with your teeth i hope things go well ..
Thank you for your information. In 2010 I underwent a life saving operation caused by my scleroderma. I was in hospital for a month and lost my colon and large intestine. I was told by a leading consultant in a specialist scleroderma unit that I now had limited cutaneous systemic sclerosis as my internal organs were involved. I appreciate there are various schools of thought on what terms are used for the condition, but on my copious hospital notes that is what is now written.
I know, I used to have such lovely teeth too! This condition gives us unwanted lines around our mouths which makes us look like we smoke, but now I have the additional problem of more and sunken cheeks where my teeth are missing🥴. I’ve been told it could affect the way I speak too once the metal plates are fitted and it’s a bit late in life for a lisp 😂
Unbelievably...I have the opposite problem...my salivary glands are on all the time like a leaking tap! But I have no sensation of it actually inside my mouth...the saliva runs out of the corners of my mouth and drips onto my chin constantly. My mouth inside is slightly on the dry side. Especially overnight my tongue sticks to the roof of my mouth which is weird! It is the only time the saliva stops running. Just find it so strange.
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