Hello all.
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?
Hi I have lupus nephritis but have no more prednisolone, anyone?
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
Thanks for this Barnclown.