Our 'Topic of the Month' discussion for April is 'Coping with Mouth & Nose Ulcers''.
Up to 45% of people who have SLE will develop oral or nasal ulcers. They are usually painless, but occasionally can be painful.
We want to hear if you have any tips for preventing ulcers or coping with them when they develop. Have you found certain foods that cause you to develop ulcers? Do you use a special type of mouthwash? Do you have any 'home remedies'?
We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
I can recommend Difflam mouthwash and bonjela for mouth ulcers. The mouthwash has a steroid in it and if used before meals can help with the pain of eating!. It shouldn't be used for more than a week at a time because of the steroid. Can get it on prescription or buy it but it's very expensive!.
I'd also like to say that if you get a cluster of mouth ulcers at any one time it's worth talking to your medical team about them because they can be a sign of a flare or a side effect of the immuno- suppressives!. Hope that helps. X
Hi Paul, I've suffered with mouth ulcers for years, I seem to go through phases of them where I get them one after the other from weeks to months and then nothing for a few months if I'm lucky. I've not had so many since I've been taking Plaquenil, although I have just had two massive ones!!
I've tried many treatments over the years and without a doubt the best treatment that I was first given was from a dentist Adcortyl in Orabase, it would take the sting out overnight it was amazing but sadly as with all good things they discontinued it 😞 !!
I don't find that anything really heals them any quicker, they always seem to take their natural course of about 7 days in healing from start to finish and so it's more about pain relief for me , I tend to use warm water Himalayan salt mouth wash and Anbesol or Bonjela to numb the pain especially before eating. I have heard that Gengigel mouthwash and gel are suppose to be very good so that is something I may try next.
I feel as if my 63 years of life so far have been spent figuring out what to do about these...GRRRR?..So, here's where I am now:
Nose ulcers:
- ENT first recommended Neilmed treatments to me a few years ago. Phew: used regularly, Neilmed treatments really help prevent my lesions & ulcers...and when these do crop up they're less severe....it's as if Neilmed sprays, rinses, gels etc seem to help prevent my nose ulcers becoming infected...and make healing faster. So Neilmed is a big help with my nasal therapeutic maintenence
- whatever, when they decide to take off, my nose ulcers tend to get infected. Then prescription topical antibiotics are the only solution. At first I was prescribed naseptin, but after a few years I became resistant to that, so now I'm prescribed bactroban: this still works!
- My current daily prescription oral combined therapy lupus meds really do seem to be reducing my nose ulcers. If they ever get going badly again, I'll ask Rheumatology whether I need more umph from my lupus meds
Mouth Ulcers:
- felt like I tried everything OTC, home remedy etc without much real success....until my periodontist recommended Gengigel products several years ago....then my dentist & dental hygienist said, why didn't we think of gengigel for you?! Whatever, a lifetime of awful mouth ulcers has given me super fear & dread of them...and made me almost silly conscientious about oral hygiene cause this really seems to help keep mine down...and now gengigel mouthwash & gel help even more. I'm prone to at least 3 types of mouth ulcer: the little type everyone gets, + the mega ulcers Lupus gives us (I kept reading medics writing these are actually painless!?) also I get horrible blood blisters & huge deep ulcers due to overlapping SLE & sjogrens & Ehlers Danlos hypermobility. But, YAY, so far I seem to escape mouth ulcers actually caused by meds! I know my lupus meds are somewhat helping damp all this down...but I still live in fear & dread mouth ulcers...every night I check inside my mouth with mirrors...trying to spot these things when they first get going: catching & treating them early with gengigel does seem to help a lot...but, even after 63 years of this, my life never ceases to be about living with constant mouth ulcers
- the topical prescription treatment that helps most seems almost miraculous to me...too good to be true! It's the oral steroid adcortyl in orabase (the active ingredient is either trimethoprim or kenalog). Several years ago the UK supply stopped: shock horror! Now my GP writes me a prescription which I fulfill abroad. Life without this wizard stuff would be too awful to even contemplate. But, oddly enough, i never use it on hard palate or gum ulcers...it works best on the tongue & soft tissues
Hi Paul, good topic! I really appreciate everybody's tips on these common and difficult lupus problems.
I like coco have a couple types of ulcers. The nasal ones do stay away better, I believe, with frequent use of a nasal saline spray - the salt water helps hydrate (to overcome the sicca symptoms) and keep the ph balanced. I also have to use a topical antibiotic if they take off , usually I use a dab of polysporin a couple of times a day for a few days.
Any of the "fever blister" type are usually herpes virus outbreaks and the only thing that shortens them and shuts down replication of the virus is Rx med such as valcyclovir. I have had times where they go crazy during a flare or when on prednisone.
I get the mouth ulcers frequently with a flare- they will appear as one of my first symptoms of a flare ( the uh oh moment, here we go again) - hydroxychloroquine did help slow them down for me, too, for a while, but not any more. I have mostly had them toward the base of the tongue or back of the mouth at the gum line and those have always been very painful ( which made me question the reason for them originally - since so many sources say they are not painful!) . However my dermatologist said they were absolutely from lupus and the Rx he gave me is very helpful. It is Betamethosone Dipropionate Gel, augmented, 0.05%. Because of the gel formulation it sticks around longer, coats the ulcer, soothes and the steroid helps heal. I tried multiple otc products without any real relief. I just recently am battling the first ever huge mostly non painful ( except with eating) ulcer on my hard palate.
Anytime I've been on an immune modulating med or biologic I've had far fewer of the ulcers - a welcome relief if you can find a med that works for you. For me, being on oral prednisone almost encourages them.
I would appreciate knowing ingredients in any of the products people recommend as usually it isn't available here in the states under your brand names. Thanks!
My sister in Philadelphia gets my 'adcortyl in orabase' topical steroid mouth ulcer treatment fulfilled for me via my GP's prescription & sends the boxes back over to me. The active steroid ingredient is either kenalog or triamcinolone,...for me, both are as good as each other. The carrier itself is called orabase paste. Sometimes the product is called 'kenalog in orabase' or 'triamcinolone in orabase':
Kenalog contains triamcinolone, a corticosteroid. Triamcinolone reduces the actions of chemicals in the body that cause inflammation.
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