I have EGPA diagnosed in Jan this year and have been navigating this all year, I am on Methotrexate and a 5mg daily Pred (due to low cortisol, just another challenge :-)). I have had my first illness that has affected me, just a minor cough and cold really and here is the but, I have a lot of white things at the back of throat/tonsils and the doctor reckons is is either viral ulcers or Lichen Planus yet another autoimmune thing! I was given antibiotics just in case it was toncilitus but they are not shifting it.
So my question is does anyone know much about Lichen Planus and any helpful advice?
Thanks
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The_Expanse
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I did not think Lichen Planus was found on the tonsils more on the tongue, gums and inner cheeks. It is sort of white, lacy and thread like. Corticosteroids can be used to treat it, it usually goes away by itself. If it is viral ulcers, antibiotics will not treat it! I must admit I thought viral ulcers were a childhood problem, but what would I know?? Do the white things cause any pain or are they just there?
Are you sore it is not oral thrush induced by immunosuppressants and prednisolone? It clears very quickly with the correct treatment which has few side effects so it is worth a go.
I was diagnosed with Oral Lichen Plan in 2016. Very painful, I eventually had a biopsy which confirmed it - horrible ulcer type plaques on my tongue, lacy thread like patterns in my mouth. It took three visits to the GP and various painkillers to get to this stage. Steroids are the treatment and I avoid triggers, in my case spicy food and more acidic white wine. I could only manage a small glass of fruity red with food - even that has gone by the wayside with GCA. It has subsided now for some years although my dentist does comment that patches are still there. I have regular hygienist appointments to keep plaque down. I was on steroids, reducing quickly from 40mg - 0mg for approximately ten months. I’m clearly a collector of AI conditions with GCA rearing it’s ugly head July 2022. This has been a different ball came. Have been doing well but picked up AfiB, high cholesterol and a TIA this August. Currently struggling to work out what is causing what, having raised LFT recently and intermittent throbbing pain in my left foot. Having to come off high dose statins for a month and retest bloods with a view to trying a different statin. It’s endless….
I have EGPA and lichen planus which comes and goes, always there a little but mostly quite mild with occasional flare ups. The dentist who diagnosed it said steroids are the treatment of choice but I’m already on steroids and don’t want to increase. He said once you have an autoimmune disease you’re more likely to get other ones, like lichen planus! Very annoying ! He does say there is topical treatment I could have if it becomes worse, but I’ve not asked for that yet.
I have lichen planus, it’s a horrible thing to have, mine was eventually diagnosed after a biopsy. It never goes away completely, sometimes it’s worse than ever, it hurts to eat and chocolate and foods that contain hot spices make it worse. There are times when hardly notice it. Try not to let it get you down, I do think pred calms it down but to the best of my knowledge there is no cure, if there is can someone let me know please
So the antibiotics don't seem to have worked so probably not toncilitis, the mouth wash also didn't seem to be making much difference so thought on what Churg said and the fact i have already had mouth thrush a few times i managed to get in my dentist this morning and guess what she said? Looks like thrush to me, so now I am on Nystatin, lets see how that goes
White spots on the back of the throat could also indicate Strept. When my GPA was active, I had all sorts of weird things going on in my mouth, sinuses , and ears. I had what felt like a lump in my throat that I kept trying to swallow. A PET scan that I had revealed a hot spot there that the hematologist said she suspected was malignant cancer. When I finally made it to the hospital, they had an ENT doc come in and he put his scope down my throat and said there's nothing there. My nephrologist, who manages my GPA, told me all the hot spots seen on the PET are like false radar echoes, they're just a mirage and are caused by the GPA.
My lichen planus started not long after my GPA vasculitis started in 2016. My GP suspected I might have tongue cancer so I had to have a biopsy (not nice). That came back clear and the oral surgeon diagnosed lichen planus. I was given soluble prednisolone to try but then I started coughing up blood so everything escalated. The lichen planus went with the steroids. This year I’ve been flaring and the lichen planus is back along with a painful sore throat, jaw, neck and right ear. So I don’t see it as a separate disease but all part of my GPA. I had difflam mouthwash and the soluble prednisolone again which have provided some limited relief.
Hi Suzi70, many thanks for this, I went and saw my dentist and they think it is thrush and have given me some tablets so lets see how it goes fingers crossed.
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Advice please!
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