Mouth ulcers : Anyone else get really painful mouth... - LUPUS UK


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Mouth ulcers

Nikki246 profile image
β€’31 Replies

Anyone else get really painful mouth ulcers? I've had them on an off for years, way before I'd even ever heard of Lupus.

Monday evening I could feel I was coming down with them, by Tuesday morning I had ulcers down the back of my throat. I went to the doctor and he just looked and said 'oh I don't know what to suggest' πŸ˜” He gave me Difflam spray and said if it doesn't clear in a few days to phone my Rheumatologist at Guys. The ulcer in my throat is giving me ear ache where my throat is so sore. All I eat at them moment is bread, the spray isn't doing a lot apart from making me feel a bit sick. 😐

31 Replies

You poor dear. Mouth ulcers are definitely consistent with lupus, or maybe a strain of herpes simplex? I would definitely go to the rheumy to have him or her evaluate.


Nikki246 profile image
Nikki246 in reply to JenInCali

I can get to rheumatologist until end of July (this was the next available appointment when I made it back in February). I can only ring them πŸ˜”

Ask for a steroid asthma inhaler ( clenil ) and spray it directly onto the ulcers up to 4 times daily. It works really well.

I get that badly as well.really feel for you. Do a search on this forum for mouth ulcers,lots of good advice and things to try.

Ooh that sounds very painful. Poor you!

I have never had ulcers in my throat but I do have them all the time on my gums and sometimes on the tip of my tongue and on the hard palate.

Sometime I cannot eat because of the pain. I always have lidocaine gel to put on the spot(s) before eating. That numbs the area for about 30 minuten.

And I use pyralvex to let them heal faster. That is awfully painful but it makes them dissappear more quickly.

Depending on the size of the ulcer they last from a few days to a few weeks.

I have UCTD but I feel it is more SLE.

Hi Patricia2015

Do you get your Lidocaine gel and pyralvex from the GP?



My rheumy prescribed me the lidocaine gel at first and the following prescriptions are from my GP.

The pyralvex you can buy at most drug stores and pharmacies. No prescription needed (here in the Netherlands).

Thank you, I'll see if it's available over here (UK).πŸ‘πŸ»x

I hope it is. Here you can find what it contains:

Maybe it is available under another brand name in the UK.

That's helpful thanks, looks as though it's available online but I'll ask in the pharmacy, they're pretty good at getting things in if they haven't already got them.

I didn't know that rhubarb has anti inflammatory properties, maybe I need to eat more! πŸ€”


Hi Diane,

I didn't know that either from rhubarb. I do know turmeric, ginger and garlic have anti-inflammatory properties. I love the Asian and Italian kitchen so it is very easy to use these ingredients.

Good luck and hope you were able to buy Pyralvex.

Thank you, I shall try for the Pyralvex in the week and yes I love Asian food too, I take garlic capsules everyday as well and I really love ginger in cooking πŸ˜‹

Hope you're having a nice weekend


hey Nikki246,

I just want to say that complete the course of medication. And meanwhile, you can try out some home remedies which will relieve you from this pain.

Nikki246 profile image
Nikki246 in reply to snowmantis

I haven't been given a course of medication just a spray to numb it. It helps enough to drink but can't eat much as it stings and gives me ear ache. Managed two small bread rolls last night.

Hi Nikki

So sorry you have such nasty mouth ulcers. Usually they can be a sign of a flare, are you getting other symptoms. Are you on Lupus treatment?. You could ask to be considered for a Rheumy appt cancellation as you've got a long wait.

Difflam also comes as a mouthwash, really helps to numb the pain before eating. You can buy it or get it on prescription. Hope they improve soon, X

Nikki246 profile image
Nikki246 in reply to misty14


I'm on Hydroxychloroquine 200mg (was on 400mg, but it got cut down on last remmy visit). I could try and get a cancellation but it's 120mile round trip so not something I can just nip off too. I had a nearer remmy but he was useless and didn't for me, at least this one is a Professor and is a Lupus specialist.

misty14 profile image
misty14 in reply to Nikki246

Hi Nikki

Looks like your Hydroxy dose needs to go back up. Glad you've got a good Lupus specialist but tough he's so far away. Have you got a lupus specialist nurse you can contact?. The ones who understand the illness are like gold dust and have to be stuck to like glue!. Try the Difflam mouthwash, I've found it very helpful. X

Has anyone ever checked you blood B12 and folate levels? Low folate can be a reason for developing mouth ulcers and is easily remedied.

Nikki246 profile image
Nikki246 in reply to PMRpro

Thank you will mention it next week as have a blood test booked.

Hi Nikki246,

I really feel for you, mouth ulcers are so so painful, I've suffered with them for years, I get them constantly for months at a time and they are HUGE, they can be anywhere but usually underneath or on top of my tongue, they're excruciating and if they're in or near my throat I get horrible earache too, like you eating is too difficult. I rinse with pink Himalayan salt and water mouthwash and use Covonia throat spray on mine or dab with anbesol before I eat, the only thing that has ever helped was Adcortyl in Orabase paste the dentist used to give me , it was amazing stuff and overnight it would take the pain away, but it was discontinued😫!

If you call your rheumatologist's secretary and explain perhaps they'll speak to the rheumy and get back to you with some advice without you having to go all that way or offer you an earlier appointment if they get a cancellation.

Really hope you get some relief soon. 🌺X

Hi there: Adcortyl in orabase has kept me sane for decades....when it was discontinued in the UK, I started getting my GP to give me an official prescription for adcortyl in orabase every time I travel or I have a close friend/family member abroad. This way I always have a few tubes in stock. For instance, I'm with family in Switzerland now & have just got 2 tubes from the pharmacy in the village...often these foreign pharmacies supply the kenalog version, which is just as effective (if not even combines an antibacterial apparently with the steroid

πŸ€πŸ€ coco

I can tell you Coco I wept when it was discontinued, my son gets really nasty ulcers too , when he was younger I used to dab a little on his at night and it made all the difference, he used to call it 'hairy paste' it was so thick and claggy!

You've given me an idea, my brother goes to France alot and my other brother lives in Kenya and will be over in August I'm going to ask them if they can check out the pharmacies there for something similar, he already stocks me up with Citro soda when he comes over, I swear by this when I have bladder pain and I can't get it here in the UK!

Hope it's warmer in Switzerland than it is here, enjoy your family time.πŸ™‚



Chilly & rainy here at the mo....but so beautiful in the mountains....πŸ€—

I currently have soreness and swelling on the roof of my mouth towards the right side that extends down into my throat. It sort of feels like when you get a mouth burn from eating something really hot, like pizza. If I'm not careful, the skin will tear open and I'll end up with sores. When the swelling is really bad, it is very painful. It always comes on suddenly.

Do you or anyone else experience this as well? I have Sjogrens and lupus.

What is lidocaine gel? Is it only avail via prescription? I'm in the USA.

Barnclown profile image
Barnclown in reply to milkwoman too...had this for decades...horrible. Just got over a session this week. The minute there are the least signs of this coming on....I gargle with gengigel mouthwash & paint on gengigel gel with a long Qtip (believe it or not: I've learned how to use mirrors to see where I'm painting + not gag) which settles my version quite effectively BUT during the 40 years before my lupus was recognised & combined therapy daily meds prescribed, nothing could settled this so SURE my lupus meds mean gengigel can help to this degree

milkwoman profile image
milkwoman in reply to Barnclown

Thanks Coco! Nice to know I'm not alone! Everyone talks about the ulcers but there is little mention of the palate swelling and pain.

Your reply made me remember a mouth rinse I have that I used to use (it is called Edo-Dent). I've been rinsing with that today and it has done wonders. It is an "oral wound cleanser/oral debriding agent" that contains "a blend of 12 essential oils with COQ10, echineca, goldenseal & baking soda."

The gengigel products look really interesting....found them on Amazon and will get some the next time I am ordering other things.

You are awesome!!

Barnclown profile image
Barnclown in reply to milkwoman

You too! πŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘

Edo-dent sounds great.

Oddly enough, my hygenist tells me gengigel's action is due to Q10...& that it doesn't help everyone....I also take Q10 supplements daily. As much as gengigel products are helping periodontist only prescribed them 18 months ago....I should've consulted a periodontist years ago! Especially after my hero head of lupus clinic ordered me to "take good care of my mouth" after her initial clinical examination (my oral cavity is full of scars from all the lesions all over, especially on my ultra high hard palate & tongue edge....this lupus clinic appt was 5 years ago now.....I just didn't realise what a periodontist does...I had been relying on dentists & hygenists & my oral surgeon).

Whatever, I still have lots of oral inflammation, ulcers etc (despite being congratulated on my oral hygiene) impression is that my EDS vascular type predisposes me to this no matter how effective my SLE/SS/PID treatment plans πŸ€—πŸ˜‰πŸ€πŸ˜˜

Am vvv much feeling for you version of this has given me v similar probs all my life. Way before my infant onset lupus diagnosis was recovered 5 years ago in my 50s, one GP suggested gargling with dissolved aspirin...which maybe helped a wee mother was a big fan of gargling with seasalt, which never helped me at all. I've added replies below re a few treatments that have helped me....I feel as if I've tried everything OTC, prescription & complementary therapy over the decades. I do take small teaspoons of pure manuka honey when this is really bad: to let the honey coat my throat at the end of whatever sort of snack/meal I've managed to swallow...I try not to drink or eat anything for at least an hour afterwards...I've found this does soothe. Also, ginger tea made fresh from the root itself is soothing...I sip it all day long just to help my mouth, throat & stomach...+ am sure it soothes my IBS

You've started a great hoping you'll let us know what helps you with this

πŸ€πŸ€πŸ€πŸ€ coco

Hi Nikki246, we wrote an article about coping with mouth ulcers a few years ago and compiled people's tips. It may be worth a read to see if anything may help -

Nikki246 profile image
Nikki246 in reply to Paul_Howard

Thank you

I get far fewer mouth ulcers since using a tongue scraper every night before cleaning my teeth. Maybe worth a try.

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