Lupus

[Berm]

What to do for mouth sores related to lupus

[weathervane]

Hi there , i have Sjögrens and i have been getting alot of very painful mouth ulcers lately. I told tthe rheumy nerse and she suggested Manuka honey 18 + to dab straight on ulcer . I haven’t tried it yet but Holland and barrett hsve some on 1/2 price at moment as is expensive . I hope this helps 🌺

[Chris_O in reply to weathervane]

Hi saw your post on lupus site, I'm on the NRAS site, but have suffered from mouth ulcers for some time.

I have used all of the following in an effort to clear them up.

Corsadyl mouthwash ( generic is chlorhexidine gluconate - cheaper)

Salt water gargle

Difflam spray ( prescription pain killer - direct spray on mouth area )

Bonjela (adult version - gel rubbed on ulcer )

Anbesol (similar to bonjela but stronger )

Out of all these the most effective for me was anbesol, but the mouth washes helped in short term.

If the ulcers persist please see your GP as they can be a sign of something else. I was eventually referred to my local hospital maxillofacial department where they took a biopsy, turned out just a nasty bout. Apparently 'some people are prone to this' !!!

No problems now but since I suffered on and off with mouth ulcers since I was a child I fully expect them to recur. Hope yours clear up soon.

Chris_0

[weathervane in reply to Chris_O]

Hi chris , i have also used all of the above! My white cell count is low so im prone to bouts . I have only just cleared up from last bout , if it does happen again I will try the Manuka honey as i only heard about it on Thursday. I hope you stay ulcer free , best wishes 🌸

[strawberryshortcake in reply to weathervane]

Manuka honey works for mouth ulcers and sore throats. Very good for all those sort of things.

[Heather211 in reply to weathervane]

Have you tried aloe vera that only take it down but i dont no about the rest.

[Berm]

Thanks everyone I will try this,my entire mouth is covered in these sores

[MandaH1 in reply to Berm]

Hi

I have a degree in oral health science and can help

Try not to use chlorhexadine ( corsodyl) it stains your teeth brown.

Try:

Gengigel comes in gel or mouthwash very good stuff

Difflam - won’t heal it but will numb your mouth

Peroxyl mouthwash - will heal and is good stuff and won’t stain your teeth.

Anbesol or Bonjella gel

Salt water

I’d personal try the gengigel £7.95 in boots.

I would also get blood tests to check your B12&6 levels. Zinc and for anaemia

Good luck. X

[weathervane in reply to MandaH1]

That is great info ! Do you have any suggestions for thrush as well ? I have have had bouts after biologic treatment , it seems to be a common problem ☹️

[MandaH1 in reply to weathervane]

Hi

Is it oral thrush you have? If so the dactarin gel is good. You can buy this over the counter for less than £5. Or a dentist or dr can prescribe you nystatin.

X

[weathervane in reply to MandaH1]

Thanks i have had it afew times . I found nystatin brought me out in a rash. I have used the dactarin gel but can take ages to clear .

[MandaH1 in reply to weathervane]

Chlorhexadine mouthwash ( corsodyl) can help. As I said previously it can stain your teeth brown. So don’t use for more than 2 weeks and don’t use around toothbrushung time or when you drink a tea as the ingredients in toothpaste and tea are what cause the staining. X

[angelswish]

I hope you dont mind me asking this, but as you said you are experienced with this thought it was worth a shot.

I have just been tested for srojens, after struggling with dry eyes, dry nose and mouth for some time, my mouth at the moment feels strange no amount of fluid takes the dry feeling away. it is hard to describe how it is, i dont have ulcers, my mouth feels really sensitive to spicy foods etc also.

Many thanks

Jane

p.s. I have had lichen planus in the past many years ago, i did notice spots on my feet recently as well

[leslieliesel in reply to angelswish]

hummmmmm...your lichen planus caught my attention....I had it also, so my dermatologist said.......Then I got the rash to top all rashes..had it biopsied and that is when /how I found out I have Lupus....maybe my dermatologist didn't consider Lupus because of my age??

[angelswish in reply to leslieliesel]

I had an alleric reaction to something years ago, i was covered from head to toe in lumps and bumps which then left a blistered rash behind, it took weeks to settle down, and weeks for my swollen feet to get back into shoes. After that my mouth was so sore and an itchy rash just kept appearing, after 6 months my mum offered to pay private, and five minutes with a dermatologist he said it was lichen planus and prescribed steroids.

I have not been diagnosed with Lupus, but was informed by a rheomotologist that I had Lupus symptoms

20 years on I am not much further, other than chronic hypermobility and more recently fibromyalgia. I told them I think it is just an off shoot from the hypermobility which has never been treated or managed properly.

I am 51 when I was 30 I had an abscess wrapped around my parotid gland, which was surgically removed, but no investigation as to the cause.

[leslieliesel in reply to angelswish]

Are You taking medication for Sjogrens?? Or have your results not come back..I'm unclear on that...Well, I am all for getting wild rashes biopsied... I really think my" lichen planus" was Lupus I am 62..."an old white female" my Rheumy told me...in this case though, being old(er) at DX is to my advantage...I am goint to have to look up parotid gland...maybe I better not, I am very suggestive and will think something is wrong why my gland!! can we say Hypochondriac?? lolxx

[MandaH1 in reply to angelswish]

Sounds like the lichen planus maybe flaring up again. You could try difflam mouthwash. Also tests for anaemia , B12&6 and Zinc May prove useful?

You can get a product called biotene which can help with the dry mouth?

X

[Hidden]

I’ve had a bad spate of mouth ulcers all over my tongue and elsewhere following a heavy cold. I have Sjögren’s and I use Salivex pastels and oralieve gel daily. But I had a few days where my tongue was too sore for these so I used Manuka honey instead. It seems to have worked well for all but a few persistent offenders.

[Jennwehrle7]

I always use Peroxyl when I get them. It’s a mouthwash made by Colgate, and works wonders for me. Good luck! I know how miserable they are.

[chrisj]

I use Difflam mouthwash when ulcers pop up, prescribed for me but you can buy it over the counter. I bought the spray and the dental hospital prescribed Difflam wash, much better than Bonjela

[Heather211]

Aloe vera good for cold sores.

[Paul_Howard Partner LUPUS UK]

Hi Berm ,

We published a blog article last year which has lots of helpful information and tips for managing mouth sores. You can read it at lupusuk.org.uk/coping-with-...

[Berm in reply to Paul_Howard]

Thanks for information. It was very helpful

[Bmagrl]

Hi,

My Rheumy said the ulcers were due to lowered blood counts caused by meds. He prescribed Folic Acid and they worked great! The ulcers were very bad but cleared up within a week of starting the Folic Acid rx and I haven't had any since

Hope this helps!