Erosive oral lichen planus

There may be some good information here for you. I remember printing some article and giving them to my doctors. I just wanted them to take me seriously. It worked! Becky

@deb1956 I was asked to comment on OLP. Unfortunately I don't have good news for you. This started 6-7 years ago. It is still there, now more like burning mouth syndrome. I have seen top docs in NYC and Boston. They have no answers, except that it often goes away. Mine did not. At first I was treated with a couple of steroid shots. They work for a short time, then it comes back. It has progressed to the point that it affects my speech and has distorted the shape of my mouth. I was told that government websites contain articles by people who treat OLP or BMS, but I have not had time to investigate the great number of articles found there. Hope you have better luck.

Good morning @deb1956 @microgirl @mrsdavis1 @jshdma @artist01
I found this article through Google scholar. It has some good information. First I googled ‘Google scholar’ which brought me to a new search page. From there, I googled ‘oral lichen planus’. Try it. You’ll find lots lots of articles. Let me know if you find anything helpful.

@becsbuddy Good article on OLP, Becky. Thanks very much for posting the site too. I've read so much about OLP and have tried so many things, seen so many doctors. Tomorrow is my first appointment with a dermatologist but I'm not expecting anything new. Not negative, just realistic. One never knows though. Where there's life, there's hope. I have a video conferemce with an Oral Medicine physician in Vancouver on May 14th so that might be interesting. The appointment is actually for my jaw dislocation in December, and the ensuing painful months since. I emailed him photos of my OLP too, taken with my cell phone camera, and he's kindly agreed to try to help me with that as well. His services are not covered by my ordinary provincial health care plan, so $215 for a 30 minute call. Ouchie! I'll be sure to keep you all posted on results. X0 Laurie

@becsbuddy Hi Becky. I checked out your suggestion for Google Scholar. Zowie! A wealth of really good articles on OLP. I've read several so far. A very important one for us is the one on diet choices - functional foods. Foods as medicine. I'm working on that very thing lately because my nutrition has suffered so much, with the double whammy of OLP plus gastrointestinal troubles. Can hardly eat anything that doesn't cause oral pain or gut pain. I've been trying my own version of smoothies, using bland fruits and veggies I know I can manage. I've tried cantaloupe, banana, spinach, carrots, canned pumpkin, honey, pure maple syrup, lactose free yogurt or milk, hemp hearts, lactose free cottage cheese,
sunflower seeds, pumpkin seeds, chia seeds. (Not all in the same smoothie!!) Check it out, gang. X0 Laurie

That’s great @artist01 ! Sure hope the information helps! Will you share any tips you learn? Becky

@becsbuddy Hi Becky. Yes, I'll be sure to share any tips I learn at today's long-awaited dermatologist appointment. Laurie

@becsbuddy Hi Becky. I had my first dermatologist appointment this morning and, as promised, I'm here to share the result.
After examining my mouth, the doctor confirmed what I already knew, that my OLP is extensive. That in itself was gratifying to hear because I felt he wouldn't just brush me off! I gave him a long list of prescriptions I'd been given by other doctors, as well as many over the counter remedies and CBD Oil. He asked how many times per day and for what period of time I'd used the Clobetasol.
I told him, just once a day and for one month. He advised that his first line of defence is Clobetasol, as often as SIX times a day. He wants me to try it FOUR times a day, and he'll phone me in one month, as well as see me again in 3 months. He assured me I'll need frequent monitoring by him, including cancer screening, often. I feel good about this appointment. Hope? Maybe. Laur

@artist01 I am so glad you had a successful meeting with your doctor! High five!

@artist01 I hope you are living in Toronto - I need a good dermatologist in Toronto!