Soreness and burning gullet could this be linchen planus
Posted , 5 users are following.
hi ladys I have linchen planus of the vulver have any of you got it in the gullet food pipe I'm convinced I have , I take a PPI for acid reflux and heartburn but still getting very sore in gullet throat and even my tongue is sore my GP said no I wouldn't have there but I'm sure I have , I know its possible to get it there I eat a very careful diet so I dont course acid or heart burn but I keep getting this horrible burning and stinging I'm feup with keep going back to doctors I'm sure if i had another endoscopy done ans they actually looked for they would find it , if anyone reading this as can you tell me how you manage it and stop tb4 discomfort and what do you eat thanks in advance you reading this
1 like, 21 replies
Guest Gillian1956
Posted
I have esophageal lichen planus (as do several others on here). Go to see a dermatologist, or gastroenterologist who treats LP. They will be familiar with it. Don't waste your time with a doc who is not up to date on the latest, or who is unwilling to do the research. One of the first symptoms I experienced was food impaction (food getting stuck in my esophagus). It is important that whoever reads your biopsy slides is familiar with what esophageal lichen planus looks like. Feel better!
Gillian1956 Guest
Posted
do you receive any treatment for the LP and diet
cookie27809 Gillian1956
Posted
it has been so bad sometimes that i couldn't swallow some foods without a lot of trouble. mouth burns, tongue burns and have white lesions under one side of tongue....
i had an endoscopy several years ago and nothing was found. my gp prescribed omepresol for acid reflux. i think that the omepresol helps. i take it every night. also started taking vit. C ...
good luck!
Gillian1956 cookie27809
Posted
who diagnosed you with LP and are you taking any medication for it
cookie27809 Gillian1956
Posted
the oral pathologist said i don't have LP and that it's an auto immune problem. however my oral surgeon says i have LP....
the biopsy report said "lichenoid stomatitis"....i just don't know what to think....the only med i take is doxycicline and ompeprasol.
Gillian1956 cookie27809
Posted
it seems to me doctors dont know enough about LP and I think it's about time more study and awareness to this horrible condition is recognized even by general practitioners
gail41674 cookie27809
Posted
My allergist noticed white lesions on my gum and said if didn't clear up in two weeks he would biopsy as this is sign for cancer. DERMATOLOGIST is my regular doctor for this, but luckily my allergist is also familiar with it. it did clear up. It stays under control as long as I totally avoid Nightshade plants (Google please) and take doxycycline hyc 20mg twice daily.
gail41674 cookie27809
Posted
OLP IS an Auto Immune illnesses! have you googled lichenoid stomatitis? if not, i suggest you do that and draw your own conclusions about what that might mean for you.
please see a dermatologist. in the USA they're the only doc generally up to speed on this disease. Good luck. whatever you do don't ignore it as it can go to cancer.
cookie27809 gail41674
Posted
thank you, Gail, i get monitored by my oral surgeon twice a year and have had several laser removals of the areas to include
3 biopsies which were ok so far...i have googled lichenoid stomititis but and the definition seemed vague....
gail41674 cookie27809
Posted
i usually have to read info from more than one site to get adequate info. what i read was a lot, why i requested you read, to much to go into.
Guest Gillian1956
Posted
With esophageal Lichen Planus the difficulty (and pain) comes right after you swallow and the food leaves your mouth and tries to make it's way down the esophagus. I have developed a couple of strictures. (They tend to be high up). The tissue is pretty fibrotic, so if I tried to get dense food ( chicken breast, bagel) through the stricture without chewing it into a slurry it would be VERY painful and I would probably end up in the ER having an endoscopy to fish it out, or worse, I could tear the esophagus. I'm so sorry about your burning mouth 😦 Mine isn't too bad although certain things (teeth cleaning) can drive it bananas. No fun, this silly LP! Hope you both feel better soon!
cookie27809 Guest
Posted
thanks!
i have the exact same swallowing condition...hard boiled eggs,chicken, breads....there have times my husband has to hit my back to help me dislodge it....pretty scary!
Guest cookie27809
Posted
You should consider having a repeat endoscopy at a center that treats esophageal LP! I see an esophageal expert, Dr. David Katzka and Dermatologist, Dr. Alison Bruce at Mayo Clinic. John's Hopkins and Cleveland Clinic I believe also have seen several folks with this condition. If you can't make it there you can request your slides be sent there for a second opinion. It can be very subtle in appearance (until it isn't) and if you haven't seen it before it can be missed.
My condition was missed for years when I went to local GI docs and as a result I now have irreversible strictures, etc. No fault of there's, they just they don't see this very often. Mayo just published a study showing the risk of malignant transformation is significant ~10% for esophageal LP so having a surveillance scope done every two years with biopsies is important. I have been taking Rituxan infusions every eight weeks since 2014 and it has helped enormously!
Kindest regards,
M.
Gillian1956 Guest
Posted
what is this Rituxan infusions I've never heard of them
Gillian1956 Guest
Posted
do you find it Carrys on burning your esophagus and throat all the time in a bad flare up ? even my voice is affected goes horse and I have to keep clearing my throat
Guest Gillian1956
Posted
Rituxan (Rituximab) is a monoclonal antiboby. It's primarily used in fighting hodgkins and non-hodgkins lymphoma but over the years it's immunosuppressive action has been employed to combat severe Rheumatoid Arthritis and some other autoimmune disorders which have a similar enough mechanism of action. It's been really helpful in controlling my esophageal LP.
I do get hoarse and my mouth burns periodically. Thankfully I typically haven't too much visceral esophageal pain...unless I swallow something I shouldn't have and stretch the strictures (ouch), or if I have been dilated during an endoscopy. The only other time was when I had been on Prednisone for a while after a respiratory infection. That always irritates the mucosa after a while. I hope this helps.
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