hi all, I’ve had OLP for three years now with no relief from any of the symptoms and have been really miserable and fed up. I’ve been given one final chance using tacrolimus, I used it before at a lower dose with no success. I really hope this one works! If not I will be referred to a specialist in London. Fingers crossed!
Hope you have a bit of luck with that---is your taste badly affected---mine is very metallic so food is not a pleasure any more with all the consequences that involves
i have capped 3 old teeth adjacent to the bad spots in my mouth with gold caps that was the answer for meit must have been the old mercury in teeth
Sorry to hear youre struggling too. Luckily my tastebuds haven't been effected but i cant eat anything with any spice at all, too vinegary, too sharp / acidic, it even hurts to eat banana! its so frustrating, i find myself now eating too much sweet foods as theyre one of the few foods that are 'safe' ! my tongue is always sore but i find it gets unbearable if im ill, i had the flu a few months back and it was agony to keep my tongue in my mouth. just so painful.
i dont think for me its anything to do with my teeth - i dont have any fillings except white ones and have had them for a long time, nothing 'new' to trigger it etc.
Hello Esuma,
If it's any consolation, you are not alone. I've had it about 18 months now. Mouth so bad that for almost a year I'd been on a liquid diet! I can eat mushy foods now. Have virtually no taste.
Do you feel ill with it? How does it effect your moods? I've gone from being a placid, easy-osy person to anxious and depression at times. But I find if I deliberately read; paint; watch a good film or just engross myself in some mind-filling activity it does help. Well, it gives my brain & gob a rest for a couple of hours anyway :D
I'm really keeping my fingers crossed that your new medication will work. Please keep us updated.
Kindest wishes Anne
This does not have the dosage or frequency, but I share it anyway. https://www.ncbi.nlm.nih.gov/pubmed/18093246
Have you tried Dexsomethasone . 5 mg, oral irrigation, swish for 5 min. then spit out. Worked great for me with erosive and ulcerations in my mouth.
No I don't think so. I tried two... can't remember what they were called right now. One gave me swollen throat. The other one gastristis & urthritis for several days. Put me off trying anything else. I am due to see an ENT doc on 14th Nov. Perhaps I can suggest this and see what he says. Thanks, Anne.
you dont swallow the steroid liquid, 5cc,s, i did it 3x a day for 4 weeks. Dramatic treatment for me. Now i am on a rinse when symptoms come back, but so much less intense. just hold in mouth for 5 min. then spit out. 5 min. is long so i would do a wash, shower, clean something to pass time.
Thanks, Stazstaz.
Give up eating nightshade plants. it may take up to 3 months to get total results but it helped me tremendously. i get an annual endoscopy to be sure it hasn't traveled to my esophagus (cancer). i take 20mg of doxycycline 2x day. dermatologist is the doctor to see for this. i have a steroid gel to use on gums if i have a flare up. i have it under control since giving up nightshade plants, try to stay calm, went gluten free also.
there is a theory that Mercury can aggrevate.
In the US dermatologists are the knowledgeable doctors with OLP. Giving up nightshade plants will do wonders for you but takes 3 months to get toxins out of body. don't cheat.
Hi What are nightshade plants-? I am on betamethazone--wash mouth for 5 mins--do not swallow---think it works with any discomfort but as i said the real problem is lack of taste---and i agree it having big effect on my life--don't go out for meals any more--do get depressed--am not seeing my partner--who lives in another part of town--as much---thank God for golf--keeping sharp objects in the drawer-!!!
i have tried dexsomethasone myself when gets really bad a few times a day however it causes my throat to get sore as well so i discontinue
my instructions same as u. it helps tremendously however even though i dont swallow it some how must go down my throat a little
ive had mine for at least 4 yrs now have some good days but more often there not so good i thought the gold fillings would help but after a few weeks i guess they weren't the culprit after all i get very disheartened and very depressed dont think i would feel as depressed if i felt there was something that could eventually cure it but there's nothing.
Hi there Yes its about the same length of time I have had OLP--as I said Betamethazone is keeping down any pain--but the major problem is lack of taste--which does make me very depressed at times--going out for a meal is a major problem as can order --say--a nice steak fried onions etc only to take one bite and can't face it any more--taste upsets my stomach and tends to reject it--very difficult to explain but have had to leave when friends have not finished--very embarrassing and doesn't do much for confidence--of which have very little now. I do put it all down to stress!! Am seeing specialist next week--so watch this space--will ask about tacrolimus Let me know if you can Cheers
Hi Esuma & Richard,
I too have exactly the same issues.
It's depressing & infuriating at the same time.
I've found that if I settle for something soft & bland
when we go out with friends, I can usually eat most of it.
Just having started to join in meals out, I put the priority
on enjoying the company.
Last week I ordered the braised beef with mash potatoes
& veg. Sounds boring but it was nice! For some reason,
you can taste foods better when they're not too hot or spicy.
Perhaps you could have a change of mindset about eating.
Food is to keep your strength up & enables you to socialise.
That's all. Next you need not to hurt your mouth. So go for
something bland & soft.
Being in control of your OLP instead of allowing OLP to control
you, really does help.
Hi Anne Interesting comment about bland foods--I have been trying tasty foods-such as chicken tikka masala but really did not like it in the end--so looks like Indian food is out--use to love it as also Chinese but that no good either--will try the bland stuff and see how I go Have you not found anything to help in this taste problem --either steroid---some people get it solved by changing fillings to porcelain from metallic Cheers Richard