Burning mouth: I am writing for the first time on... - LUPUS UK

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Burning mouth

AdrianaB profile image
19 Replies

I am writing for the first time on behalf of my mum, 83, who has started experiencing burning in her mouth, mostly on her tongue and palate!

She also has very itchy face and scalp!

Dr cannot help, all sorts of creams, including steroids, shampoos, havent help!

She is on hydroxychloroquine 200mg x 2

Has anyone experienced those symptoms and can you help, please!!!

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AdrianaB
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19 Replies
Spanielmadlady profile image
Spanielmadlady

Hello.sorry your mum is have problems .has she tried the salivix pastels from her gp? I have sjorgens and they are prescribed for dry mouth .sorry I cant be of anymore help x

AdrianaB profile image
AdrianaB in reply to Spanielmadlady

Thank you very much for your prompt reply, I appreciate it!

I will contact her GP tomorrow and ask for Salivix! Take care x

Spanielmadlady profile image
Spanielmadlady in reply to AdrianaB

They are a sugar free fruit flavoured pastel and are really pleasant to suck.they dont have cough syrup taste like some do . X

AdrianaB profile image
AdrianaB in reply to Spanielmadlady

Lovely! Hopefully it will help, thank you again! X

PMRpro profile image
PMRpro

Burning mouth syndrome maybe? No real treatment but management options:

mayoclinic.org/diseases-con...

healthline.com/health/burni...

AdrianaB profile image
AdrianaB in reply to PMRpro

Thank you so much for this useful information! Best wishes x

Salzer profile image
Salzer

I've found Gengigel spray helpful for sore burning tongue. It's quite light but works quickly and definitely helps me as I get this fairly regularly. It's available in Boots I think. Hopefully you can find something to help. Sounds miserable for her. x

AdrianaB profile image
AdrianaB in reply to Salzer

This is a welcoming suggestion, thank you very much, will head to Boots tomorrow! Take care x

Gcart profile image
Gcart

For me vitamin b12 has done the trick .

B12 under the tongue with compound vitB’s .

Seemed to clear it up very quickly after years of issues with that symptom .

janekins profile image
janekins

My rheumatologist and my dentist both recommended fresh pineapple, not tinned. I had a slice every day for 2 weeks and it worked.

Hope your mum soon feels better. Burning mouth syndrome is not pleasant at all.

Jane x

AdrianaB profile image
AdrianaB in reply to janekins

What an unusual remedy but the healthiest, mum will try it from today, thank you very much for this advice! Take care x

Olderkitten profile image
Olderkitten in reply to janekins

That's interesting, I never would have thought of that because of the acidic properties, I would have thought it would make it worse but at this time I'll try pretty much anything if it helps. Thanks 😊

janekins profile image
janekins in reply to Olderkitten

Just make sure it's fresh pineapple. It really helped me and hopefully you will notice a difference in a couple of weeks.

Good luck.

Jane

Olderkitten profile image
Olderkitten

Hi AdrianaB, I have been going through the same thing with burning mouth and itching and it's miserable because everytime I mention it to one of my doctors they say that's not their area of expertise and go see the dentist who also has no clue says see your gp....so frustrating! I recently saw my rheumatologist and made sure she paid attention to what I said so it's possibly sjorens so she increased hydroxychlorquine and had 8 day taper of steroids and of course labs and I do feel better. I wish you and your mom all the best.

AdrianaB profile image
AdrianaB in reply to Olderkitten

Thank you very much for your reply! Mum’s journey is the same as yours, nobody knows much about about these symptoms and how to help, we are on the same journey as you, seeing Rheumathogist soon and probably adjusting her medication! Her GP strongly suggest against steroids while my husband who is a dr thinks they would help with quality of her life because of her age!

I wish you all the best, take care! x

Minnskimoo profile image
Minnskimoo

Hi AdrianaB

Sorry to hear about your mums discomfort - I know the feeling well. Most unpleasant.

I suffer with terrible oral problems, BM being one of them. Mouth ulcers and peeling skin in the oral cavity also.

I am seeing an oral medicine consultant for these problems and Sjögren’s is a consideration along with possibility of lupus - or other autoimmune disorder. This is not to say it applies to your mum, of course. In the meantime, (bloods not done yet) I have been prescribed B12 as my levels are low. Oralieve toothpaste that doesn’t contain sodium lauryl sulfate and mouth gel to put on at night to keep the mouth moisturised inside. (I’m a mouth breather)

The itchy skin- dermatologist actually recommended Aveeno moisturising cream with oatmeal. (Oatmeal baths are an old remedy for many skin ailments and it helped my grandaughter when she had an extremely bad case of chicken pox) We put a sock with oatmeal in the running bath water. (I’m ancient-chuckle) It seemed to help her intense itching.

I suppose we are all different - and what works for one, might not necessarily work for others. Just some considerations.

Hoping you find some relief for your dear mum.

🤞🏼💐

AdrianaB profile image
AdrianaB in reply to Minnskimoo

Thank you so much for taking your time to reply and describe your experience! I will certainly try to apply oatmeal remedies along Aveeno cream on mum’s skin, other creams haven’t help so far! I

I wish you all the best and hope all your discomforts disappear soon, I believe in miracles too 😊 x

Minnskimoo profile image
Minnskimoo in reply to AdrianaB

You are v. welcome!

And thank you . Truly appreciated. x

DJK99 profile image
DJK99

Hi there - so sorry to hear your ma is going through all this.

Also - has she got ulcers in her mouth and on her palate? I have them a lot in the winter for some reason - I went to the GP with these symptoms last year as it was getting so bad could only eat soup and yoghurt etc. She prescribed soluble steroid pills as a mouth wash only ie not to be swallowed. I have to say I didn't use them in the end as I'm so wary of steroids, and it was beginning to turn the corner by the time I got to see the GP anyway... but they might work for your ma. And the Salivix pastilles are good too. And one other obvious essential in life - does she drink lots of water each day? She should be drinking 2 litres a day - unless of course she has some underlying condition that means she shouldn't. Staying hydrated internally directly affects our whole body inside and out... although it has a hard job to with our kind of conditions. Also - I'd leave some bowls of water around the area of radiators which allows for humidifying the air as in the winter the drier air from heating can really affect our eyes, skin allover and our mouths.

I also have very itchy extremely dry skin allover and so have discovered Eucerin 10% Urea Intensive Skin Lotion for my body - but they do have great face creams too - and for scalp. eucerin.co.uk/products/dry-... Please have a good look round the site - I get mine via prescription now as it's quite expensive and I use the body lotion twice a day which has transformed my skin! I used to leave a trail of flakes wherever I'd sat and there was a cloud of skin coming off my clothing when I undressed... not great - and just a very uncomfortable way to live. Also iff she has cracked heels the lotion twice a day will sort that out.

Hope that helps and all the best to you and your mum - you're obviously doing all you can for her! x

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