Oral Lichen Planus
Posted , 10 users are following.
hi,
i have recentl been diagnosed with oral LP
Its been 6weeks of painful mouth lesions.
I believe it was triggered by either chronic Hepatitic C (which I have been treated for and am 12 weeks negative). I am considered cured for HCV however the specialist discovered a new diagnoses of Autoimmune hepatitis.
That is my history but if anyone else has oral LP, whom long do your flare ups usually last for?
Im not keen on treating it with corticosteroids but am very frustrated and miss good food.
thanks
0 likes, 20 replies
Rellots trudy98661
Posted
I have erosive lichen planus for the last 5 years which sounds like the same as yours. It is a different condition from non erosive lichen planus. It's somewhat confusing on this website because most people are posting about the nonerosive type. Can somebody clarify the different elements?
Anyway, I have found that eating bland foods is about the only way to prevent an eruption while in an active state. So, occasionally when I don't have any irritation and sores I'll enjoy a pizza or barbecue. I just never know which will set it off. Kind of like a gamble.
You'd think that the issue would get worse when your resistance is low, however, right now I have pneumonia and no issues whatsoever with the ELP.
Pretty weird stuff.
trudy98661 Rellots
Posted
'Weird stuff' Indeed !!!
Prior to my oral LP diagnosis, I had just recovered from a cold. After I went to the dentist (who initially diagnosed me), I came down with the flu. It's been 5-6 weeks and I still have an inflamed mouth with white rash/ along chew line/lil' bumps side of tongue & inside upper lip. Thought it was improving so I expanded my diet. I'm recovering from flu but my mouth is worse. I think food texture is important because it seems to have played a role in my LP regression.
Solution: bland & soft diet?
Possible trigger: pepper it a particular spice?
Good4unurse35 trudy98661
Posted
You are correct. Diet plays a huge role, especially during a flare. For me, I have to avoid acidic things... tomatoes, citrus, spices etc. Even not during a flare I have to water down orange juice, avoid tomato juice entirely and limit sauces etc that may be too acidic. You will figure out your trigger foods and yes textures as you go and learn to avoid them. It is a true challenge as there really is very limited research and information out there. I know it can be frustrating but either trust the that your doctor knows enough about it or if he feels he doesn't, find one that is well versed in it...you have to almost be rude by asking about their background with treating it to know. Get with someone who is experienced and try a variety of things until, YEAH!!!, something works.
Good4unurse35 trudy98661
Posted
Hi Trudy, I have been fighting with Erosive lichen planus, that started as Oral Lichen Planus. Mine is extremely resistant to most things, bit my Doctor decided to try a self made solution of Tacrolimus. I take 1 capsule and one ounce of water, break the capsule open and mix them together, swish for at least a minute and spit, I do half in AM and half in PM. Talk to your doc about it. Works pretty good for my aggressive lesions. I do sometimes still do steroids and was doing Rituxan (now on Medicare and it won't appear) bit as I mentioned I have a very resistant form, not sure how yours may be.
trudy98661 Good4unurse35
Posted
Thank you G4n35
It's not only on cheeks & back of tongue, lip but also surface of tongue.
It doesn't look like I'll be eating Christmas dinner.
I will ask if I ever get to see a specialist.
I'm going in 7 weeks of oRal LP ( with 8 weeks or a cold then flu) and I am so frustrated. My family GP referred me to 'the mouth clinic' at a hospital but they take a long time to respond- 2 weeks?
Good4unurse35 trudy98661
Posted
You should look into a dermatologist or ENT...of course the other option is a rheumatologist...but this may depend on if your insurance requirements. Mine doesn't require a referral from my GP. If you do mouthwash or spicy toothpaste stop now. Go with a baking soda toothpaste. I know it sucks, but helps keep flares down. As discussed before really limit acidic foods and if you drink alcohol no more fun for you. Don't forget coffee and soda are no-nos as well. I hope you can get some relief before Christmas
trudy98661 Good4unurse35
Posted
Thanks for the toothpaste tip!
I used Biotene 4 dry mouth ...tried herbal = ouch!
Don't drink but do love chocolate..,
Quit coffee a while ago but now I have quit tea too.
How long is the average oral LP flare up?
I can't seem to find that info.,, I just want to see a light at the end of the tunnel.
I trained & worked as a nurse for several yrs.
Tip my hat to you.
Hard work ; )
Good4unurse35 trudy98661
Posted
22 years as nurse and 10 in Adult Education here, nothing prepares you for something like this....I hate to be bearer of bad news, but you can't find the info on flares because there is no "norm" or standards. Being an autoimmune based disease, everyone is different and even triggers can be different. Having been in medical field, you know how research works. No research if there isn't enough patient population to make it worth it to make meds specific for the disease. It's just such a rare disease on the grand scheme of things that there isn't a ton known about it. Most of what is learned is from forums like this....I'm always happy to share what I can to help and always appreciate what others can do as well.
michelle_02437 Good4unurse35
Posted
My sister has suffered with this for almost a decade. Did you get your primary care physician to prescribe this? Or your dentist?
Most days she is miserable and says it's worse in the winter. Today, she started to eat a Hershey kiss and couldn't due to how much it burned.
She said this has been a new thing that eating chocolate burns !
She has a prednisone rinse and was given clobetasol gel to use on oral tissue. She starts that tomorrow, but I'm more interested in your method.
I've been a dental hygienist for 30 yrs and we are at a loss with erosive lichen planus. We treat symptoms only and refer out usually to so that! I fee like a failure to my wonderful sister and of course am so scared about it turning cancerous.
How do you settle your mind over this?
michelle_02437 trudy98661
Posted
What medications do you use? 'My sister has had this for almost 10 yrs.
It's terrible
trudy98661 michelle_02437
Posted
Hi Michelle
I just use a mild corticosteroid prescribed by a G.P (Triamcinolone Acetonide). It's actually a dental paste.
I just started being symptomatic in Oct'16 ; it started as reticular (asymptomatic) for 1-2 months and progressed to erosive (felt like I had razor blade cuts & cankers all over my inner cheeks/tongue). It's been almost 3months and I'm just starting to get a little respite. I'm hoping it gets better from here. My guess is the decrease in inflammation etc.. is
due to my diet? time? The fact that Christmas season is over = reduced stress?
I still waiting to see an oral pathologist - waiting time to get appoint. is 4-5 months.
Sorry I couldn't be much help with meds. I hope not to need much and prefer the naturopathic route.
All the best to your sister
jay94566 trudy98661
Posted
Hiya I suffered with this for nearly two years I'm under out patient with the hospital and have a check up every 3 months , I had my silver fillings removed 3 mths ago and replaced with white and there has been a massive improvement, I tried everything for the pain with no effect , I stayed clear of spicy food and cider these things seem to trigger a very painful week , the gp said there wasn't anything other than steroid washes or laser surgery to help
trudy98661 jay94566
Posted
Hi Jay. Thank you for the reply!
I have silver fillings... unfortunately my silver fillings are all in the back molars (all 4 sides, 3 on top, 3 on bottom). To remove them would be a massive undertaking as they are huge fillings and some teeth are cracked- barely held together by the filling.
I have had them for years so I'm not skeptical of this being a problem however I'm so glad you have had a massive improvement.
Good news re: oral LP. Is hard to come by ; )
chris50240 trudy98661
Posted
chris50240 trudy98661
Posted
I so understand your frustration. I have olp as well and on my back and feet too..
My back has broken out many times in 7 8 months .. I found out back on April last year.but didn't get diagnosed for months after. Went for dental cancer screening then saw a dermatologist months after. At the end of the day I also had hep c but I am clear have been over a year.Iwent to my dentist cause it thought it had to with work on my teeth broken teeth.
The pain and the blisters the sores not being able to eat toast spicy hot tea etc etc ..feels like veins are swollen in my mouth ..feels like mouth has open cuts or scratches
The list goes on.
I used a cortisone mouth wash but doesn't help. Other than that I use nothing I live with this day to day has never eased up
The only time is when I'm at work 8 plus hours and I don't drink or eat it feels calm but the second I drink even water it's back at it.
The dermatologist did nothing except tell me what it was . The back and feet I can live with but the mouth omg.
I heard coconut oil it's supposed to help I bought it bit haven't used it. Because I know have cirrhosis of the liver stage 4 I'm very careful what I put in my mouth.
Even biotene burn's like crazy..I'm at a loss.
I guess it's been so long I need to go back to my Dr to get referred to a specialist. But from what I read on thus forum not much helps.
I sense frustration on both sides but reading baking soda toothpaste works better I will do that. Going searching today for it.
I wish I could give u some advise but I have none. I could use it myself. I'm guessing this is for life
I hate this.
trudy98661 chris50240
Posted
Hi Chris
It's tough when nobody knows what to do with you!
I'm so tired of dr appointments and get sick at the drop of a hat in winter.
I try to remain as calm as possible ... live healthy and it eases up but it's hard not to be anvious when anything you put in your mouth makes your mouth over react by becoming red inflamed,and break out in painful sores. I think anti anxieties might help me personally. I mean if this is for life... make the immune system as calm as possible so as not to trigger any reaction(?)
I dunno.
Finally got appoint. For oral pathologist but as far as I know it's just for confirmation of diagnoses & monitoring for oral cancer... perhaps a mouthwash for temporary relief?
Immune system disorders are horrible; there's no cure to the way your body reacts.
I only see improvement when I awake in am= 7-8 hrs of not eating/drinking
Just when I think it's getting better- a new sore pops up or I get a cold and then it's back to square 1
I'm sorry to hear about your cirrhosis- at least you took care of the hep c virus so it's no longer stressing your liver. I find the hepcfriends discussion board extremely helpful. There are a lot of knowledgeable people there- going through the same thing.
As far as coconut pulls- I stopped doing them but maybe I'll try again; if anything it's soothing. Baking soda is good when things are really acting up.
I wish you the best with the skin LP (I'm greatful I don't have that...as of yet)
OLP is indeed frustrating but it helps to know your not alone. So again - thanks for posting ; )
chris50240 trudy98661
Posted
Hi Trudy
I am in good health truly I am ..I rarely rarely get sick. Ysj the cirrhosis is there but causing no problems at present.
This disease is bull lol I could say worse but just gargling with coconut oil is supposed to help. Just went to store got arm and hammer toothpaste with baking soda let's see what that does.yes u should be checked every 6 months a year at most for oral cancer. We have dentist that do a free checkup during oral mouth cancer month. Idk where u ate and what month the cancer screening is but check it out. I'm due to go.
Wishing u the best
And info that can help pass it on to me please and vise versa
trudy98661 chris50240
Posted
4 sure Chris- stay in touch!
and I'm glad you're in good health ; )
chris50240 trudy98661
Posted
HI Trude
The arm and hmmer baking soda toothpaste burns as well
Don't know what else to use
JRoPnoGrl chris50240
Posted
I've been using Tom's toothpaste, fennel flavored, and it doesn't hurt as bad as everything else out there.