My mouth and Lips : Does anyone suffer really sore... - LUPUS UK

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My mouth and Lips

GillsM profile image
7 Replies

Does anyone suffer really sore lips? My top lip has 2 deep cuts going through them. Its really painful I seem to always have skin peeling off the inside of my checks and sometimes the roof of my mouth! My lips are really painful just now and not sure what will fix it, its been like this for months, it will disappear and then come back within a few days.

Thanks Gxx

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GillsM profile image
GillsM
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7 Replies
KathinAyrshire profile image
KathinAyrshire

And how!! I find that lypsyl is the only solutions, applied many times a day, at night I use a coconut butter serum and this will last till morning but the first hot drink which leaves half the balm on the mug I have to apply it again. Working out of doors I find I need salves in my pocket and sometimes will apply a salve every hour or so. So far I have not found any permanent solution to this problem. I too have skin peeling off the inside of my cheeks and the blisters on my palate, which come up with no warning can be huge. I'm afraid this seems to be yet another infernal symptom of lupus/sjorgens. I find that the key to the sore lips is to keep on with the salves, even if your lips are not sore at the time. Hope you soon get some relief.

MargaretGail profile image
MargaretGail

I get big blood filled blisters on my cheeks throat and tongue, the skin sloughs off my cheeks forming a lacy effect round my lips (very atttactive) and very sore lips with big cracks. The only way I found to control it was with steroid mouth wash but when my Hydroxy chloroquine sulphate dose was increased I was able to stop the oral stuff. It can get extremely sore and my GP said he had never heard of it and the dentist thinks I'm fabulous because "you only read about cases like me in books" LOL Hope this helps I know how sore it can be.

Olibop profile image
Olibop

Vaseline I find keeps them soft and supple but when mine have been as bad as yours I put germaline on them at night until they heal but this can dry them out so make sure you use tha Vaseline all the time during the day this works for me xxxx

mojo profile image
mojo

Hi GILLS, YES I HAVE BEEN GETING IT FOR A FEW YEARS NOW, ALL I CAN SUGGEST IS NIASTAN FROM YOUR GP.. AND MOUTH WASH, BONJELA IS GOOD TOO, BUT I HAVNT FOUND ANYTHING YET THATS HELPED COMPLETLY, DR DOESNT SEEM TO BE TO BOTHERED WITH THIS BUT ITS SO FRUSTRAIGHTING.... WISH YOU WELL..X

anbuma profile image
anbuma

i had a swollen sore tongue and certain foods made it sting like mad.dr gave me a "gel?"gave temporary relief then recurred twice but ok after that

jennylee profile image
jennylee

hi, yeah I suffer the same and it's totally the fault of lupus, as per usual

I was referred to a dental consultant at kings who also specialises in lupus, he thought my lips had been burnt the first time he saw me they were so bad. he's very supportive but there's not much he can do. hydrox is supposed to help but I was on that anyway, he prescribed a cream for the bad ulcers and did a biopsy on a couple of the bigger growths in my mouth.

afraid applying excessive amounts of Vaseline, as echoed by other replies, seems to be the only help. I do use a Clinique intensive lip moisturiser at night which is pricey but very good

wishing you well

GillsM profile image
GillsM

Thank you so much everyone for all the replies and advice really means a lot to me that you all care enough to give advice! Thanks again xxx

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