Oral Lichen Planus flare up

Hi Janet

Sorry to hear you are suffering with this.  I have been battling this horrible condition for at least 6 months to a year and have tried pretty much everything under the sun.  The MOST successful thing for me has been using Oracourt.  It is prescribed by my doctor and works absolute wonders.  The trick is, to dry the area where the ulcer is with a tissue and dab it on and then try not to close your mouth to allow the Oracourt to form a seal over the ulcer.  I actually use a blow dryer on the area to speed the process and it works great.  I find if I do this right before I go to bed at night, it allows the paste to work and most of the time, when I wake up in the morning, the ulcers are all but gone.  I might have to do it for two nights if I have a particularly bad flare up, but the Oracourt is great.  Also, during the day after I have eaten,  I will also make a mouthwash using about a cup of luke warm water with 1/4 tsp. of baking soda and 1/4 tsp of salt.  The baking soda restores the PH balance in your mouth and along with the salt, it is nature's cure for almost everything.  Triggers for me are definitely sugars, cheeses, spicy foods or salty crunchy snacks.  And of course, stress is the biggest enemy of this disease.  Since there is so little study on this disease and most doctors tend to just tell you to live with it - you will have to figure out your triggers by trial and error.  Since I have no definite idea what is the main cause, I pretty much don't deny myself anything though - everything in moderation.  As long as  Irinse my mouth after eating one of the things that trigger my ulcers, with warm water to neutralize whatever is affecting you, it usually works well for me.  Good luck and hope you can try using the Oracourt mouth ointment.

Janet, So glad I saw your post. I went through the same thing with my oral pathologist. She prescribed every cream, salve, ointment in the world and nothing really worked so one day my niece who is a nurse practitioner (look it up) told me that the oral pathologist isn't allowed to prescribe the systemic prescription that a dermatologist would and that is what really made the difference for me. Once I was on a systemic everything changed!

Good luck,

Linda

What type of Systemic were you on?  BTW, I’m a retired Nurse Practitioner.  I also have a dermatologist as I have Psoriasis.  I’m currently taking stellar.

First he put me on Mycophenolate 500 MG twice a day and that caused awful side effects....hair loss and rapid weight gain. I complained and he changed my prescription to Hydroxychloroquine 200 MG 2 times a day. It worked on me and my mouth lesions cleared up right away. After taking it for two months I started reading up on that drug and found it can affect the macular so I quit taking it. My OLP is still quiet right now, but I'm well aware that it can return at any time and what I'll do at that point I'm not sure. 

Good luck to you. 

Hi Sally

I really feel for you as you must be suffering terribly.  I see an Oral Pathologist to manage my OLP.  An antidepressant might help as well to take the edge off.  Have you tried drinking ensure to get nutrition?  I would chill it before drinking it.  Let me know if any of this helps and good luck.

Thanks Janet. I am pretty done trying to find a doctor. They may mean well but no one really knows how to treat this horrible condition. I don’t like Ensure because it has a lot of sugar and chemicals. Sugar can bring on Yeast which we are done to with OLP. I am going to do my own drink if I continue to lose weight. I also need to get some therapy as I am living under a lot of stress and I know this can bring on flares. 

My doc gave me thrush meds for olp and it made it worse it's the worse thing you can do !! I went down to 7 1/2 stone coz was so hard to eat so now I'm vegan I cook up a big bowl of pudding rice (it's softest) with soya milk and agarve syrup to eat all day then mash spuds n veg for dinner not very nice but it's palatable ! Coconut oil in mouth is very soothing xx

Sorry  suffering with this awful OLP. Have you had a biopsy to confirm the diagnosis? It's really necessary to be able to treat it in the correct way.

I've had it for about 3 years and I went through several specialist and none of them have known what I had until I reached a dermatologist and he knew instantly and prescribed the medication I needed. I was a systemic, Methotrexate which does have side effects but I didn't take it very long and it cleared up the lesions right away. i only took it for 3 months and then stopped and my lesions have not returned. I say the dermatologist is the way to go!

Good luck. 

Yes I have had a biopsy on my tongue and when I had it in my vaginal area. I haves heard of the medication that you mentioned. I was going to the University of WA Medical center. I have been to several dermatologists. I have never really had any success anywhere.  I will check out the medication you mentioned. Thank you!

Sounds like we're in the same boat. I too have looked at some of the images on line and feel that my OLP and Vulva Lichen Sclerosus is sort of minor in comparison. Although my clitoris has disappeared too due to the scaring.

My OLP in my mouth is quiet right now. I quit Methotrexate right after my mouth felt better and refused to go back on the drug due to the side effects. Everything is quiet for right now and I'm grateful!

Good to hear from someone with the same illness as myself.

Good Day,

Linda

I might have already responded on this thread, but in case I haven’t, I want you to know that I see a specialist who only deals with infections of the vulvar region.  After suffering for years and being on a variety of steroids, I was referred to him.  Clobetasol did nothing for me.  I have been on Elidel cream for the last few years.  It has been a miracle drug for me.  My VLP was diagnosed by biopsy. The pain, itching and depression it caused was beyond horrible ( as you know).  I started at 2X day, then 1X day. Now about twice a month.  No pain, itching or sores.  Totally in remission.   Please talk to yourgyn about Elidel.  He also told me that he has had success using the kind of lights used on psoriasis patients.   It is an autoimmune deusease, and will strike areas that are warm and moist. Yup, got it in my mouth, too.  Also, be sure to have your eyes checked.  That’s another place the little buggers like to reside.   BTW my daughter, who has very bad endometrios, has seen an acupuncturist and swears by it. She wants me to try.    Take care my friends.  This forum has kept me sane.

Ellie