Tongue issue

[Valnvaughan]

I believe I have read posts on here re waking with your tongue "glued" to the top of ones mouth in an arch. Was there a remedy?

[Soraya_PMR]

Two thoughts spring to mind...

Oral thrush?

Sjögren’s syndrome?

[Soraya_PMR in reply to Soraya_PMR]

mayoclinic.org/diseases-con...

[Valnvaughan in reply to Soraya_PMR]

Thanks. Already have the dry eyes and skin. And the thyroid disease. Goody goody!

[SheffieldJane]

A dry mouth is a side effect of a lot of medications we take. I have been prescribed a dry mouth spray by the GP, the dentist will prescribe a special tooth paste. I have bought a lotion called Biotene from the Pharmacy that I find good. I am only troubled at night and sometimes apply it once or twice during the night and drink water.

[Valnvaughan in reply to SheffieldJane]

Thanks. Will send Hubbie for some, as not mobile after hip replacement.

[Janstr]

I had this pre diagnosis & pre pred. I assumed I was dehydrated & drinking more fixed it.

[PMRpro Ambassador]

Not something I remember.

But at a guess I'd say dry mouth - Sjogrens itself or sicca syndrome which accompanies many autoimmune disorders. As janstr says - possibly you need to drink more. It could also be you are mouth-breathing overnight.

[Valnvaughan in reply to PMRpro]

Thanks. I'm well hydrated. But maybe mouth breathing as having to sleep on my back to prevent new hip dislocating, and snoring! I am told.

[Celtic PMRGCAuk volunteer]

Yes, Val, that happened to me. Sjogren’s Syndrome or Lymphoma were suspected and various tests carried out but eventually my wonderful rheumy ruled both out, suspecting instead Mickulitz’s Syndrome, a close relation of Sjogren’s and a condition that would eventually burn itself out. It did after about 7 months. At the time, the Sjogren’s Society recommended chewing a certain type of gum but I’m sorry I can’t remember which one! If you are in the U.K., perhaps a call to them might help. Good luck - that’s a horrid experience - I hope you will be as lucky as I was with the outcome.

[Valnvaughan in reply to Celtic]

Thanks for advice

[PMRpro Ambassador in reply to Valnvaughan]

Xylitol gum????? It has natural antibacterial properties it says! Dry mouth doesn't do mouth hygiene any good - so be careful and maybe speak to the dentist?

[Valnvaughan in reply to PMRpro]

Thanks. I am watching my mouth as have "lost" two slivers from my front tooth in last 3 months!

[Hidden]

I suffered badly from this when on a higher dose of pred. 25mg. As I reduce the dose, now 9mg tapering to 8mg, the symptoms are diminishing. It was very scarey when it first started and no amount of water would quench the night thirst. It also coincided with oral thrush, dry eyes and my mucus drying up. Again, all these problems have reduced since lowering my dose of pred. MY GP (who said it wasn't Sjogrens) referred me to an ENT doctor, who gave me a thorough examination, including with a camera into the back of my throat and he could find nothing amiss. I think that my tongue sticking to the roof of my mouth has been one of the worst side effects of pred, because when I woke in the night it was so alarming.

[Valnvaughan in reply to Hidden]

Thanks. I'm down to 4 mg Pred. But maybe it is PMRpro idea as to cause....mouth breathing.. Sleeping on my back to prevent new hip dislocation with difficulty and snoring a lot, I'm told!

[Canygirl61]

The first suspected diagnosis for me was Sjogrens (though since ruled out), because of chronic dry eyes, and very dry mouth at night. I never sleep without water on my bedside table. Glad you asked, because I learned valuable info from others here. 😊

[Telian]

I too had a very dry mouth but they ruled out Sjogrens saying I had too much saliva! They are monitoring for Sicca syndrome instead.. ATB

[Valnvaughan in reply to Telian]

Thanks for input. I tried rinsing my mouth and drinking water each time I had to go to bathroom last night....4 much too often! ....and it helped.

[Telian in reply to Valnvaughan]

Do you have enough saliva to swallow easily? - just when you mentioned your tongue sticking to the roof of your mouth, that was a Q my GP asked if I suffered with, as it didn't happen to me he dismissed Sjogrens.. also if it was oral thrush you would have more discomfort than 'just' dryness I would have thought. As mentioned I am being monitored for Sicca, which my Dermy thinks I might have as have dry eyes, sides of mouth, not in the mouth, and nasal passages - but juries out with Rheumy on that one.

If there is a remedy I haven't come across it yet, just use eye drops, vaseline on a cotton bud for nasal area and Canestan for side of mouth for occasional use - how many more side effects can we get is the million dollar Q,,,, ATB

[PMRpro Ambassador in reply to Telian]

Sjogrens and sicca are, to all intents and purposes, the same symptoms. The difference is that you have antibodies for Sjogren's. But like everything else - you don't have to have all the symptoms to have it so rulling it out becauseyou didn't have a dry mouth is a bit daft...

[Telian in reply to PMRpro]

Interesting - I've got used to managing the symptoms but see Dermy in August so will see what he has to say - it's my GP that said about the dry mouth... thanks