This is my second post of the day, but it's not related to my first, so it seemed better to post separately. I've recently heard of steroids used as a mouthwash for oral pain. I've suffered with oral pain since 2017, even before I was diagnosed with lupus. I was referred to the dental hospital where I was diagnosed numerous times with heavy growth of candida (oral thrush) for which they prescribed fluconazole, which didn't really help a great deal. I get ulcers - they come and go. I also suffer with chronic painful tongue and dry mouth. I've been prescribed every single treatment you can possibly imagine for my ongoing mouth issues / pain, to no avail. I can live with the mouth pain - I've got used to it, but what I haven't got used to is the effect on my sleep. Because of the pain and discomfort I drink a lot of water during the night. (I don't have diabetes - I've been tested and have urinalysis sticks, which I occasionally use). The cold water is pleasant and alleviates the discomfort temporarily, but because I drink so much water, I have to visit the loo numerous times every night, to the great excitement of my cats, who always think I have got up to play with them when I suddenly appear 😀 I am wondering why no-one has ever prescribed prednisolone gargle for me and wonder if it might help. I have an appt with my rheummatologist in 2 weeks, so i'll ask then. In the meantime, has anyone used steroid gargle for symptoms like mine?
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Ophelia1
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good question! Will follow your discussion with great interest. This is horrible: am totally relating & feeling for you 💞…except we don’t have cats to make for that sorta nightime fun 😆
Am 69 with infant onset lupus & the usual secondaries inc sjogrens, small vessel vasculitis etc. Ever since i can remember, have been managing huge erosive oral lesions i call Mouth 👹 Monsters + angina bullosa haemorrhagica blood blisters + oral lichen planus + ultra fragile soft oral tissues, so everything about my mouth has always needed constant nursing.
The magically effective topical oral steroid kenalog or adcortyl in orabase ceased production & distribution in the uk approx 11 years ago …& since then all the medics i’ve asked for prednisone mouthwash have given me blank stares.
So have had to rely on things like my dentist’s & GP’s buccal hydrocortisone tabs which barely help at all. My other most helpful products are from my periodontist & oral hygenist: the Gengigel range, & from my GP: synthetic saliva (the only type without xylitol, to which i’m allergic) . My oral surgeon has prescribed steroid inhalers, but have been hesitating to use them cause so hard to just expose targeted areas in mouth (am trying to continue managing to avoid oral thrush) . Have tried to get my normally usually ultra helpful dermatologist to step up on this, but so far she hasn’t
So, am hoping your post attracts at least one person who has managed to get prednisone mouthwash on the nhs. My sister in the usa has it for something very similar to lichen planus & it works great + she finds treating specific parts of the mouth relatively easy
I get dissolvable betamethasone tablets prescribed for my painful oral ulcers that I dissolve and then use as a mouthwash. They can feel like they’re working miracles when the ulcers are so bad that I can’t even speak or swallow properly. I’d definitely speak to your rheumatologist.
I did have my GP query why they were prescribed recently (I’ve been getting them for around 3-4 years) so definitely doesn’t seem to be a common practice, but they were more than happy to continue them on my repeat prescription when I advised that it was rheumatology who prescribed them to me.Please let us know how you get on when you ask rheumatology.
Fingers crossed that they listen to you and prescribe it! Even if it gives just a bit of relief it would be better than no relief at all. Let us know how you get on.
Like @Marosea, I also used to use soluble betamethasone tablets as a mouthwash. They didn't get rid of my pain completely but they certainly helped a lot. My only problem was that they used to make my already sensitive teeth even more sensitive so I was keen to find another solution if possible. I'm currently taking calcium folinate (not folic acid) daily, except my methotrextate day, which has made my mouth problems SO much better than they were. I just need to sort out my teeth and gum/jaw/nose/ear pain now.
Hi I had similar problems been on steroid mouthwash for a few years now I only use as and when to keep under control. I only posted a reply yesterday to someone how it may help her..
Hi SufferingMike21 - Thanks for this. This is exactly how I would use it, only sparingly when absolutely necessary. My mouth is not always as sore as it is right now.
Hello Ophelia. I understand very well what you are feeling; the mouth pain for me is mostly my tongue. Burning tongue syndrome it’s called. When I get blisters they are usually on roof of my mouth and I know I’m flaring soon after the malar rash creeps across my face. Here in the US I am prescribed a mouthwash by my dentist. It is compounded at pharmacy. The ingredients are : lidocaine, nystatin, amoxicillin, steroid, and Benadryl. I gargle up to 4 times a day.
Some of the pain in my mouth is my own doing. I still have 2 cups of coffee every morning. It aggravates my mouth. But life has to be enjoyed on some level with this growing disease list of mine! Anyway, this combination works. Best to you
I’m sorry to hear this. Compounding pharmacies where I live in US are an integral part of medicine. But it still requires a prescription from your Doctor. I may have inferred we just walk in and get it. An old boring but old remedy is sucking on ice. I do this a lot.
👍🤷🏼♀️me too: i was born in philadelohia but moved to the uk @ 21. I’ve followed my usa nearests & dearests’ health odysseys all these decades…& one aspect of usa healthcare i do envy is this access to clinical pharmacology.
Lol. Ice truly works. Never leave house without huge yeti full especially in summer. My body does not regulate temperature well(damaged nerves in spine and then lupus. Yay!). Ice helps the burn in mouth and in summer keeps temperature regulated as much as a person like me can be. Endocrinologist advice years ago. 💜🙌
🤔 well, I never…& me too: damaged nerves all over inc spine making for crazy temp regulation…I have cool gel pads all over the house…lying on one right now with feet on another…will give 🧊🧊🧊🧊🧊 a go ( is 🧊 an ice cube…too tiny for me to be sure 😆)
oh I’m so sorry for your pain. Just now looking at your picture of your body on ice! I’ve had to do this to my face with lupus rash and cold packs. Now with EM when it is burning very badly on my feet, hands, chest. But I do it for 3-5 minute intervals. This was recommended by neurologist. I hope you have a good day! An owl sighting perhaps 🌼😊💜
thanks💞…yes, even when we have diagnoses in common, the way we’re advised to manage them can be so different.
My version of severe RP had 6 decades to segue into severe ischemia reperfusion injury & that segue gave birth to my version of EM around 1998…
meanwhile the sural axonal peripheral neuropathy & degree of lumbosacral scoliosis were getting more severe with grade 2 vertebral fractures adding trouble …& my lifelong mouth to exit GI stuff was simultaneously segueing into Chronic Failure of Small Intestine + Chronic Intestinal Pseudo Obstruction…
Well, thank goodness I finally have a good team of multidiscipline tertiary care consultants helping with all this (+ my very own Specialist multidiscipline nurse)…NOW I understand how, as the decades pass while we age, relatively mild infant onset lupus can gradually segue into more severe + all the inevitable add-ons…
& THANK GOODNESS for this wonderful community & Lupus U.K.: I’ve been here for 11+ years now pretty much every day, although for several years now am much less actively participating… it’s always helped me to keep my stuff in perspective + to feel wonderful sense of solidarity 🤝✊🤞✌️ ❣️
Hello MrsMarigold - I too am a coffee addict, but like you I now keep it to two cups a day. I'm just enjoying cup number two as I type. A bit later than usual, so hope it won't keep me awake later. 😀
Please don't be too eager to use a steroid mouthwash, especially with sjogrens. I had access to steroid mouthwash after my initial diagnosis over 20 years ago. Worked wonders, or so I thought. The dental hospital have since advised me that this contributed to the degree to which my gums have receded and the almost total destruction of my tooth enamel.
I had been asked on more than one occasion where I had my teeth done. This was due to me have been lucky enough to have perfectly aligned, white teeth. I've now had 8 extractions, have teeth that are stripped of enamel, discoloured and my front teeth look badly stained when in fact they are virtually transparent!
Sometimes what seems like a simple solution isn't always so. Just be careful. But I do hope you find some relief as I really do understand your pain
It was about three years before anything was noticed. The dentist I had at the time told me I needed to get an electric toothbrush and brush more often, which was completely the wrong thing to do. This only became apparent later on as my sjogrens wasn't diagnosed until the dental hospital saw the deterioration and picked up on what was really happening.
That’s really hard….v much feeling for you…so you were using it daily for 3 years: Gosh 💞🙁….
Am coping with irreparable injuries in various body systems due to slow diagnostic uptake…I do find this tough. But am feeling lucky I FINALLY am getting better attention….just feeling disheartened by coping 24/7/12 with all the damage - which in some cases is progressing more slowly now thanks to improved combined treatment plans, but of course it’s all still deteriorating, especially now am so much older (my lupus was infant onset, am now 69)
getting sjogrens diagnosed seems to be tough on so many of us…my Cornea chief diagnosed mine & has listed Sjogrens in all his reports for about 7 years…& FINALLY this year my otherwise vvvvv insightful rheumatologist finally admitted I also can only have had early onset sjogrens too (the dire conditions affecting all my ‘holes’ & skin creases etc+ the vascular neuro manifestations)….for 12+ years she’d referred to it all as manifestation of ‘sicca’ 🤷🏼♀️
Hi Solo99 - Many thanks for this cautionary advice. I will take heed. I do wonder though whether your issues would have happened anyway. I say this because like you I had great teeth when I was younger, but during the past 20 years I have had very similar dental problems to yours. I wonder if the dry mouth was more to blame. My mouth is terribly dry most of the time now and in retrospect I realise that I've had dry mouth since my late teens which gradually got worse and led to the diagnosis of lupus. I will watch the mouthwash use if I get some from the rheumatologist
early gum recession: me too, but due to hypermobile Ehlers Danlos Syndrome: when I was only 10, my dentist was alarmed at the gum recession he saw in my mouth already. I’ve been on a special brushing routine ever since. Turns out my sort of early recession is a characteristic of hEDS…then + early onset Sjogrens 🤷🏼♀️
Hi I have taken oral steroids as a mouthwash for oral lichen planus which is for a sore gums and mouth ulcers. I just keep the solution in my mouth for 10 minutes and it gives instant relief.I
Hi Ophelia, I have been using prednisolone, antibiotic and Nystatin mouthwash for about two years now. I use it three or four times daily dissolved in warm water when things are bad and reduce as things improve. It has reduced the severity and length of ulcers and sore spots significantly. My Rheumatologist prescribed a years worth in one go. I hope that your Rheumatologist will consider this 3 in 1 mouthwash for you too. Keep us updated and good luck xxx
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Prednisolone diary - May
