Sjogrens Syndrome.

[Diana1954]

I have Sjogrens Syndrome. I wonder if one of the reasons I get oral thrush plus black tongue so bad when on all antib's is because of. My mouth literally dries so bad my tongue sticks to the roof of my mouth....I know many people have probs with their ab's. It is vy painful. Feels like someone has stripped the skin from my tongue, roof of mouth and down my throat. Hurts to eat or drink. Badly. No sailva with SS but gallons of mucous with the copd! I do have the probiotic yogs but they dont seem to help much...any ideas?

[Hidden]

I have the same problem I have to chew chewing gum all the time the inhalers, steroids and abs can contribute to it and recently been diagnosed with psoriatic arthritis take care

[201251]

My mess leave me with a really dry mouth I can highly recommend Biotene Gel Got mine at Boots but probably available at most pharmacies. It is specifically for very dry mouth. Kath

[201251]

Was meant to say my meds ****

[juzwundering in reply to 201251]

sorry 201251, I thought that was a funny way of speaking about your medications...and guess it does kinda fit! MESS.

[barbs47]

Hi Diana 1954 I really can sympathise with your dry mouth problem. I don't have the condition you have but I suffer terribly with a dry mouth. My mouth particularly at nite is so dry I can swallow or get my tongue of the roof of my mouth. I did some research and found a product called XyliMelts they are manufactured by a company in USA and were around £23 for 40. Researching some more I found an on line company in Uk mouthulcers.co.uk their price is around £7.50 for 40 tablets. These are the best thing I have ever used. They are a round tablet which is brown on one side and white on the other. You put them in your mouth brown side against your gum and they slowly dissolve lumbricating your mouth. I tried all sorts of things before I found these. I showed them to my doctor who had never heard of them but was very interested. I have used them now for well over 12 months and cannot recommend them highly enough. There is no minimum order I do recommend you give them a try. They can be used in the daytime or nighttime, don't interfere with speech or anything as they stick to your gum. They do mint-free or mint. Good luck hope this helps..

[delilah]

Sorry Diana, sympathise absolutely but afraid I'm unable to offer a solution. I'm a Bronch with Sjorgrens and and have tried everything available as the dry mouth is my worst symptom also. As you know trying to talk/eat when your mouth feels full of 'superglue' is not a lol is it? So far I haven't had oral thrush tho, but then always on anti-bi's for the chest.

About 15 - 20 years ago in its earlier stages I was able to suck a sweet and chewing gum used to help me speak but now nothing does, none of those gels, sprays pastiles designed for dry mouths work when you produce no saliver at all. The relief from them only lasts seconds then you need to rinse out your mouth to get rid of the sticky residue they leave behind as your own mouth is unable to Get rid of this for you. Forkful of food + a gulp of water gets the food down, inelegant but better than choking.

My trusty bottle of water is the only thing I can rely on but need to sip it approx every 5 mins now if there's a danger of anyone speaking to me.

Being hard of hearing doesn't help either so all these auto immune diseases are turning me into a bit of recluse actually, was always 'quiet' but beginning to find social gatherings too stressful now.

I'm on my own consultants register for Sjorgrens and they have 4 meetings a year so will pass on any breakthrough I find out about.

[adleybra in reply to delilah]

I have found sugarless gum is my best answer. I use Oral 7 toothpaste and mouthwash works well. The other brand changed formula and I could not use .

I have been getting patches of very dry skin that feels stinging and burning . I too had a hearing problem and now have hearing aids. Always something.

[Diana1954]

Hello, thanks for yr advice etc. V sorry for you. SS horrid isnt it my eyes r terrible, gp gave me artificial saliva spray for mouth but made me gag! Like u i depend on water. Woke up this am to find my throat is closing, hope its not pharyngitis again. Suppose id better ring dr think its caused by ab's...like you im deaf. With loud tinnitus. Both sides. Uses two hearing aids. I have hearing but not good. When i get infections it nearly disappears. Please take care of yourself. Bfn!

[Valcopd]

Hi Everyone. Please note that anything with sugar in it will only make any oral problems worse. Strepsils do a Sugar Free version, available from Tesco, only in the one Strawberry flavour. XX Val

[tamariki]

I get thrush from using Symbicort. I take a course of Nilstat oral drop when it gets too bad, and this works wonders.

[knash88 in reply to tamariki]

Do you rinse your mouth out after taking your inhalers? Inhalers can cause an increase in thrush and is important to rinse your mouth out with water after use.