Sore tongue linked to Pred and/or GCA?

[Phoenix51]

For some months now I have had a really sore tongue .. feels like I’ve eaten something that’s too hot or keot a fizzy sweet on my tongue. Initially GP thought oral thrush. Prescribed nystatin, then daktaein gell then a tablet, no improvement, also had a mouth swob came back negative for thrush but i was on antifunfal treatment at the time. GP prescribed gavisvon and upped dose of omperezole as thought maybe reflux as I have sour/bitter taste in mouth. I have changed toothpaste to biotene and also mouthwash of the same brand. I have been thinking burning tongue syndrome as the symptoms match mine and also Sjögren’s as I have dry mouth, eyes and blurry vision. The only time I have respite from it is when I’m eating which isn’t good as it encourages me to eat more! I just don’t know what to try next. Really fed up. I’m posting a picture to give more of an idea , may have to enlarge, zoom in to see the blisters/sores. Anyone had anything similar? Could it be caused by Pred or GCA?

[yorkieme]

I do sympathise with you as everything that you describe fits my experience to a tee,including the treatments recommended by the G.P. but all of them failed. Few days of thinking it had been resolved and back it came.

I have found that certain foods are a problem,e,g, I eat sourdough bread,I bought brown thinking it would be best ??? No,it just felt like sand paper.So I tried olive oil instead of spread but that made it taste even worse.

Although I cannot help check out your local health products shop,we have an excellent one here in Rhos on Sea,extremely knowledgeable about this terrible disease but they are great for advice and don't push their products too hard.

Good luck.

[Phoenix51 in reply to yorkieme]

Thank you so much for your reply .. I will take onboard your comments re. carts in foods as hadn’t thought of that. I don’t live too far from this on sea so could consider a visit to the shop once my shielding ends. Thank you and I hope your situation improves let me know if you find the Holy Grail!

[Phoenix51 in reply to yorkieme]

Hi. I’m still having problems with my tongue ... I changed my toothpaste to Biotène and also bought the mouthwash of the same brand. Was hopeful but alas no change in fact think it made it worse. Dr suggested Diflam mouthwash - I have been using 3/4 times a day for a week and a half, still got the sore tongue and burning sensation especially at the tip and sides of my tongue.GP feels it’s the Pred and it will go as I reduce but I’m not convinced. Hoping you have had more success?

[yorkieme in reply to Phoenix51]

Sad to say I am still struggling,however my situation is now made worse by Morphine 24 hours/day,no appetite,no taste sensation and just as you say my tongue pretty sore.Keep going,there must be an answer but again I reckon the G.P. is probably right.

[Phoenix51 in reply to yorkieme]

I hope you are feeling somewhat better? How is your tongue?

[Marilyn1959]

Ouch! Can't help as it is out of my experience but do empathise. Looks really, really sore. Hope you find root cause and cure very soon.

[Phoenix51 in reply to Marilyn1959]

Thank you so much for your replying and empathic response ☺️

[Phoenix51]

I tried to add an additional photo of the end and top of my tongue but don’t seem to be able to do that. That area of the tongue has little red dots

[PMRpro Ambassador in reply to Phoenix51]

Has to be as part of a pre-prepared collage to put it in the same post.

[Dilly-B]

Ouch. Poor you.