Posted , 10 users are following.
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!
0 likes, 26 replies
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richard92537 Esuma
Posted
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
anne13482 richard92537
Posted
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.
richard92537 Esuma
Posted
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
anne13482 richard92537
Posted
Hi Richard,
I've just been bumbling along, doing my best to discover ways to make this all 'acceptable.' I think I'm just resigned now. I miss many foods I loved but
for me worse thing is not being able to find a toothpaste I can use.
My teeth are stained and look disgusting. I do floss & brush but it's not the same. Every toothpaste I've tried makes my gums/mouth worse. Do you use a toothpaste?
My sis got this a few years ago. After 3 yrs suffering had allergy testing & was allergic to metal teeth fillings. Had them removed & within a month .... cured. Her mouth is totally normal now. I've had 2 removed but caused mouth to flare up so bad! I've still got 3 more and will wait until next year before having them done too.
You'll get there, Richard. Good luck with the soft n bland. Christmas will be a hoot, eh.
Esuma anne13482
Posted
my consultant recommended to use childrens toothpaste - my big teeth contains an adult dose of fluoride but not SLS which should be avoided for OLP. I found it still made my mouth a little sore but nowhere near some others. Avoiding mint flavour can also help - before that recommendation i was using a charcoal toothpaste but I think they dont contain fluoride which is bad for your teeth using long term
richard92537 anne13482
Posted
HI Anne
I use a sensodyne toothpaste--tends to stop the teeth being sensitive in any case----my mouth is not too bad as I do feel betamethazone is keeping pain to a minimum
Yes have heard about metallic fillings possibly being the cause---trouble is it not a certain thing--many people had it done---& nothing happened!!!----
Trouble is have ulcerative colitis caused by stress--have it well under control---but dentists are about the worst place in the world for me---great isn't it----so anxiety tends to control me
Yes Xmas is going to be a laugh--turkey a bit bland but the bits and bobs do help--at least we can visit these places--maxila facial and dentists without too much expense in the UK---have heard that in US it costs thousands--hope you not located there!!!
As you say need to keep calm an live with it
anne13482 Esuma
Posted
Thanks, I've tried all sorts. Childrens. Natural plant forumlas. I could have bought myself a new 3 piece suite with what I've spent so far 😄 I've given up and just use salt/water gargle to brush....and gargle.And put my hand over my mouth when I laugh - which is surprisingly a lot 😄 😄 😄
Have a great Christmas & lets hope that 2020 bring some joy happiness & improved gobs.
Esuma
Posted
unfortunately no success so far with the treatment. My consultant said he would refer me to a specialist in london if no luck so seems that will be the approach. I have to stick to plain foods mainly due to pain rather than taste - your taste issue sounds horrible, a really odd one. as a side effect from the cream i have an odd minty / cold sensation in my mouth but the soreness etc all still there unfortunately.
Youre right food is about sustenance and its better to avoid pain, spice is so painful i regret it any time i risk it and it doesnt pay off.
tamara58088 Esuma
Posted
I just wanted to share a tip with you. I also use Tacrolimus ointment orally. I have found if I cut small cosmetic sponges and put the ointment on them, then place them in my mouth on the affected areas, it works really much better than smearing it on gauze. Good luck! I hope that treatment works for you!
Esuma
Posted
Hi all, what a strange time - I hope youre all doing well. sadly my treatment didnt work so i was referred to the specialist hospital in london. they were very thorough but also told me they were very concerned about the appearance of my tongue and the potential for it to turn cancerous so i will now be seen every 3 months and they have taken photos to make sure they dont miss any changes... scary but im glad they are so on it. they seem to have many more potential treatments than my previous consultant. for now im on a new steroid mouthwash twice a day (one that is normally taken nasally!) and a steroid gel at night. no results so far and in fact my mouth feels more sensitive but well see. been told that there are many more very potent steroids to try... not looking forward to that but id love to finally have some relief!