Mouth ulcers: Hi all, I’m wondering if you can... - NRAS

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Mouth ulcers

Emye343 profile image

Hi all,

I’m wondering if you can recommend anything to get rid of persistent mouth ulcers? I’m on humira (coming up to 6 months now - my rheumatologist insisted on keeping me on it even though it was doing nothing for me and she seems to have been right as it’s finally starting to work!), but I have developed a whole set of mouth ulcers inside my lower lip which I’ve had for around 6 weeks and they just won’t shift. They are sore but not terribly painful, but I’m aware of them all the time because of their position. I can only assume they are linked to my depressed immune system. (I suffer from oral lichen planus in my mouth but this is different). Any suggestions as to what I might take to get rid of them would be gratefully received. Thank you!

55 Replies

Hi, I got mouth ulcers when I started on methotrexate - I take a supplement called Lysine which has stopped them (along with cold sores). Not saying it will work for everyone but I was lucky! Hope you find something that works for you soon.

Emye343 profile image
Emye343 in reply to Dobcross1

Hi Dobcrost1,Thanks. How much do you take? I was recommended lysine for the oral lichen planus but with the proviso that too much wasn’t good for the kidneys. No idea how much is too much though!

Dobcross1 profile image
Dobcross1 in reply to Emye343

Gosh I'd no idea about the kidney warning! I've been taking 1000mg each day since starting mxt in 2019!

Cheylann profile image
Cheylann in reply to Emye343

I would rinse my mouth out with sea salt and boiling water twice a day and use anbusol gel or liquid on them. May burn a bit but brilliant.Obviously the cause needs to be treated going forward.

Sorry to hear about your sore mouth. Would it be worthwhile to have a word with your dentist ?🤔

Emye343 profile image
Emye343 in reply to Pythagorus

Hi Pythagorus,Thanks for the suggestion. I already see him a lot for the oral lichen planus in my mouth so I’ll mention it next time I go, if it hasn’t cleared up by then.

Morning. Do you take folic acid?? I had mouth ulcers and now take 5mg per day except Mx day. No problems since.

Emye343 profile image
Emye343 in reply to CripLady

Hi CripLady,I used to take 5mg a day 6days a week when I was on methotrexate, but didn’t think it was necessary with humira. I might well start it again. Thanks for the suggestion!

CripLady profile image
CripLady in reply to Emye343

I’m not a Rheumatologist.. but it’s worth a go x

Hi Emye343, I swear by Diflam spray, you can target the actual ulcer without it numbing your whole mouth. It’s over the counter as well.

Emye343 profile image
Emye343 in reply to Lizard28

Hi Lizard28,I’ll get some. Thanks! Anything is worth a try.

You can buy hydrocortisone buccal tablets over the counter to place on the ulcer to help heal them. Like someone else mentioned I take folic acid 5mg 6 days a week, but not sure if humira affects folate levels like MTX.

Hi Maureengibson,I didn’t think humira affected folate levels, but I suppose if it depresses the immune system all sorts of thing might come to the fore. I might try a small dose to see if it makes a difference. Thanks for your help.

Try Gingigel mouthwash. It helps.

Emye343 profile image
Emye343 in reply to Wobbies

Hi Wobblies,Thanks. I’ll try that - got some in the cupboard I think!

I’ve got Sjogrens,I often have ulcers and sore mouth.The practice nurse prescribed me Salivex pastilles.

I don’t know if they because. I’ve been waiting 12 days.

Pharmacy trying to hold of them.

Nystatin helps me,but they won’t put it on repeat.

summer32A profile image
summer32A in reply to Oshgosh

There has been a long time shortage of salivix ask then to prescribe glandasone oral spray instead.For dry mouth.

Ulcers I use good old anbesol liquid to dab on,.

Gengigel also good

Cheylann profile image
Cheylann in reply to summer32A

Anbesol is brilliant

Emye343 profile image
Emye343 in reply to Cheylann

Thanks!

Oshgosh profile image
Oshgosh in reply to summer32A

Thank. You

Emye343 profile image
Emye343 in reply to Oshgosh

Thanks Oshgosh.

I had horrible clusters of mouth ulcers after my Pfizer jabs. The GP prescribed a steroid mouthwash which worked really well . Hope you get some relief soon, they are so miserable.

Emye343 profile image
Emye343 in reply to rounder

Thanks rounder, yes, it’s miserable.

I use oragel mouth rinse. It helps

Emye343 profile image
Emye343 in reply to noelkruse11

Thanks for the suggestion!

Corsodyl medicated mouthwash might help, my dentist recommended that. It tastes disgusting though but I have found it helps.

Emye343 profile image
Emye343 in reply to ruth_p

Thank you!

Oshgosh profile image
Oshgosh in reply to ruth_p

Thank. You

HiI used to get them a lot and just used bonjela which stings initially but then numbs so as well as getting rid of them takes away the discomfort. I started on a variety of supplements earlier this year to try and help with another persistent issue and funnily enough haven't had any since which might of course be a coincidence. I now take probiotics, cod liver oil and D-mannose.

Emye343 profile image
Emye343 in reply to grumpygirl

Thanks!

I used to get them all the time when i first started on Methotrexate & often between 10-20 at any given time. I was eventually referred to dental hospital who prescribed something called Adcortyl in Orabase & it’s the only thing that every worked. It was like a paste. I’m not sure if it’s still available. X

Subeyk profile image
Subeyk in reply to Otto11

Same here I used adcortyl in orabse which is no longer available in the uk but I buy it from universal pharmacy and it’s very expensive for a small tube around £10 for a tiny one but one tube has lasted me about two years you only need a small amount. I tried everything else and nothing worked. However since I have been on methotrexate the mouth ulcers have eased and I only get occasional flare ups so Methatrexate seems to stop them for me. I have a tube of adcortyl on standby.

Emye343 profile image
Emye343 in reply to Otto11

Thanks Otto11.

Hi, I use all the Gengigel products, they do a gel, a spray with a long tube that reaches places easier and also a mouthwash. When I get ulcers or even just a sore mouth I find they work really quickly. I couldn't be without them. 😊

Emye343 profile image
Emye343 in reply to Circlrdancer

Thanks Circirdancer, I’ll try that.

Lysine, Vitamin B12 (right before bed), and what I do is rinse my mouth with Oral B mouth sore rinse/mouthwash before bed after brushing. Usually, the sores are either gone or much better after just one use. I get mouth ulcers as a side effect from Actemra. GOOD luck!

Emye343 profile image
Emye343 in reply to patrickd

Thanks patrickd.

I too have had some really bad ulcers, on mtx & lefluminode aswell as other meds, had a bad cold recently & chest infection so knew my immune system was really low, asked in the chemist who have me iglu, its like a paste you dab on the ulcer(s) which when wet from saliva seals over the ulcer, tbh my ulcers were really bad & trying to put a paste on them hurt but the relief was brilliant although you do feel like you've got a plaster on the inside of your mouth, I also tried bonjela which was a lot easier to put on aswell as anbesol both sting a bit, think having antibiotics though was the main reason for them starting to clear up & taking a break from mtx, antibiotics now finished so still applying any one of these hoping they don't come back as bad x

Emye343 profile image
Emye343 in reply to Garnacha

Thank you!

I too was given Adcortyl by the dentist years ago and it was brilliant but it is not now available. I take 5mg folic acid every day apart from Mtx days. I still get ulcers mainly big ones on the inside of my lower lip, like you. I now use Bonjela Complete + which I get online. It forms a protective barrier over the ulcer and is the best thing I have found so far.

Emye343 profile image
Emye343 in reply to Alfiesmith

Thanks. I’ll look out for that.

I was recommended by a Maxillafacial Surgeon at our hospital to use Corsodyl mouthwash, use twice a day until they are gone and then once a day to keep at bay. This has pretty much eradicated my mouth ulcers and at their worst I had about 30!!! Bongela to use when you have one or salty mouthwash😬. Hope this helps. Xx

Emye343 profile image
Emye343 in reply to Bessieboo1

Thanks Bessieboo1. I certainly have lots of suggestions to explore now!

Bessieboo1 profile image
Bessieboo1 in reply to Emye343

Hope that you find something that works for you as they can really make life miserable. Other name for Corsodyl is Chlorhexadine digluconate. Xx

I’m sorry to hear this. I too suffer with them terribly. I’ve been on methotrexate and sulfalazine and happens with both of those meds, so think it’s also the RA and not the meds?

Emye343 profile image
Emye343 in reply to NikkiNix1

Could be. It’s a horrible disease, for sure. X

Hi

Fortunately for me bonjelia works for me not let me down yet .

Hi

Fortunately for me bonjelia works for me not let me down yet.

Hello, I take Methotrexate and Etanercept injections and periodically get mouth ulcers. A strong dose of Cordosyl mouth wash usually does the trick and really calms down the pain.

I have Sjogrens and get frequent mouth sores, also react to nuts. I use Ionic Silver and a couple of sprays heals it. It’s tasteless and easy. I get it from health food store or online.

Emye343 profile image
Emye343 in reply to Imom

Hi Imom, I’ve not heard of this before. I will investigate! Thanks x

I've been on Methotrexate for a few of months and thought I'd escaped the dreaded mouth ulcers, but I got one on the tip of my tongue last week, and it hurt like heck! I gargled with tepid salt water (glass cold water topped up from the kettle to bring to body temperature, then add 1/2 tsp salt) a few times a day and applied anbusol gel (rather undignifiedly with kitchen paper folded in a strip and tucked under my tongue before applying the andusol so it didn't immediately wash off. I looked like a right prat with my tongue sticking out, but it seemed to work because the ulcer mostly cleared in three days!)

Thanks - certainly worth a try!

My hubby had spent years suffering with mouth ulcers seen many specialists. Someone on here mentioned pure liquorice . I got some liquorice pellets on Amazon very cheap. My hubby looked at me as if I had grown 6 heads . I said nothing to loose . As soon as the ulcer appears he puts the pellet on his ulcer and leaves it until it melts . My hubby couldn’t believe it . No more steroid sprays etc . I’m not saying it works for everyone but my hubby spent years in major pain but not anymore .

Emye343 profile image
Emye343 in reply to J1707

Thank you! I might give that a try.

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