Oral lichen Planus: What home remedies or medications help you?

Welcome @davemeister, Thank you for sharing what has helped you. Do you mind sharing what brought you to Connect, were you looking for information to help with a health problem?

Hello John,

I saw Microgirl's post as I was browsing for information on a possible link between my oral lichen planus, the ulcers inside my mouth, and my glossitis. Brushing was painful. It seemed I could not find a toothpaste that was not painful within seconds. One day I mentioned my problem while chatting in a group of people. A experienced nurse told me with no hesitation to use this specific toothpaste. It causes me no pain at all.

This part should be very interesting. I received the results of a biopsy in my mouth today. To my utter surprise, the results were negative for oral lichen planus, even though my mouth had ulcers. The official diagnosis was "ulcer, with reactive epithelial changes". I set out to find the cause of the ulcers. The most likely culprit seemed to be my CPAP mask putting too much pressure on my face. My cheeks were squashed against my teeth, and the same kind of thing was happening with my lower lip. I have been wearing a full face CPAP mask for over a decade. The ulcers in my mouth coincided with the places where the mask presses against my face. According to the CPAP forums this is common, and there are several possible solutions offered. I have not had a chance to try them.

I theorize that many of the sufferers on this forum might have oral lichen planus AND ulcers from improper cpap use, unrelated to the oral lichen planus. Treating both conditions separately may help.

These are some of the tips I have read about:
1. Dab ulcers with Q-tips soaked in hydrogen peroxide for a night or two. This might sting. This is supposed to clean the ulcers and lower the PH. Too much acid in the mouth encouraged ulcers.
2. Use white toothpaste and don't rinse.

For CPAP users: It is all about proper fit and cleaning.
1. Consider skipping the cpap for 3 days if you can, to allow healing.
2. If you have an automatic cpap with a lowest pressure setting, reduce the low pressure on the machine if your doctor agrees. Since it is automatic, the CPAP will still set the pressure to what you need. The idea here is that you may not need air pressure higher than your current low setting. If so, the air pressure can be lowered. This allows you to to loosen the straps, reducing mask pressure on your face.
3. Start out with a new mask and cushion.
4. Clean headgear weekly and the mask daily, using Johnsons baby shampoo. Instructions can be found online. In the damp environment inside the mask, disgusting stuff grows and builds up quickly.
5. Buy a tube cleaning brush and clean the tubing once a week.
6. Replace the cushion every month

This should be an interesting experiment for me. It seems I have violated every one of these tips.

I hope you are able to use this info. We who live in pain need all the help we can get.

Davemeister

Hi Davemeister -- Thank you for the information. I've been struggling with a CPAP nose for a few years due to a full face mask also and the constant need to keep it snug. I've tried many different under the nose full face masks with no success and keep going back to my ResMed AirFit F20 which gives me the best sleep results. I'm in the process of getting a nose pillow mask and using a chin strap to see if I can make it work, time will tell 🙂

I was surprised to see that your Crest toothpaste works so well for you since it contains Sodium Lauryl Sulfate (SLS) which is the ingredient that makes it foam/clean and also can be an irritant to ulcers in the mouth. That's why I switched to one that uses baking soda and doesn't have SLS.
-- Is Sodium Lauryl Sulfate (SLS) in Toothpaste Safe?: https://nutritionfacts.org/2021/04/01/is-sodium-lauryl-sulfate-sls-in-toothpaste-safe/

I've had OLP for ?maybe 25 - 30 years. At one point it was erosive and dentist did not even have a clue about LP. I had to go to a teaching hospital to get a Dx. Over the years I tried so many toothpastes and mouth rinses. what I landed on that helps the most is: 1) gentle electric tooth brush, 2) baking soda and 3) rinse with hydrogen peroxide. Swish afterward with water. My gums are the healthiest they have ever been.

That is great news to hear. I will definitely try it!

Hi John,

I just tried a little experiment. I used a different toothpaste to see if it would sting. Photos of the tube are attached. It did sting mildly, and the toothpaste I mentioned earlier did not. The stinging started on my tongue, then to my cheeks. I have glossitis on my tongue. That used to be the most sensitive part of my mouth. When I started having problems years ago, I could only keep toothpaste in my mouth for around 5 seconds. It hurt my tongue quickly. Both pastes have SLS, but the concentrations might be different. Many of the other "inactive" ingredients are different but could be important. I have heard of the SLS issue before. I have no Idea why my my toothpaste doesn't hurt, but it doesn't, so I use it.

I am going to give the baking soda / hydrogen peroxide / water series a try.

I have oral lichens planus or pemphigus...awaiting biopsy. Can I take Shingles vax or wait??

Hi @steveandsteph, welcome. I moved your message to this existing discussion about oral lichen planus.

- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

I did this so you can connect easily with fellow members like @maryz @cmtg @bustrbrwn22 @robinkani @fdixon63 @rashida @artist01 @jshdma @microgirl @chari9 @SusanEllen66, who have experience with OLP.

Steve/Steph, you ask specifically "Can I take Shingles vax with OLP?" That is a very good question and best answered by a physician. You PCP should be able to talk to you about the risks and benefits, and when to get vaccinated.

I believe @chari9 spoke about having OLP and shingles simultaneously and that's rough. I'll be interested to hear what you learn.

How low have you been dealing with oral lichen planus?

I literally feel your pain. I've been to at least six different dentists in the past 6 years trying to treat my Oral Lichen Planus (OLP). They give me steroidal washes, oral steroids and even steroid injection in my tongue and the insides of my cheek. The last 5 months have been absolute Hell. I have been suffering with, fissures on my tongue, spiderweb lesions, multiple ulcers, and the inside of my cheeks are touching my teeth. It hurts to talk, brush my teeth, smile, and just live a normal life. I've been living on protein shakes and very soft foods. After years of trying to find an OLP specialist I found a dermatologist just 40 minutes from my home in Maryland at Johns Hopkins University Hospital, thanks to this blog! My first visit was Thursday. I was greeted by two interns who took the intake and then followed by the big gun and well known specialist in his field, Dr. Anhalt. I was given a shot in the butt, low dose steroid, and numerous prescriptions. I walked into the office a desperate woman and left feeling hopeful. I know there is no cure but perhaps there is a path forward to keep this hellacious disease in check. It's been three days and the drugs are starting to kick in. This is the first time my teeth are NOT touching the inside of my cheeks in months. I'm praying this will work. I'll keep you updated on my progress. I go back to JHU in 6 weeks.

Do you mind sharing what medication you doctor prescribed.?