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

Posted by lovebug61 @lovebug61, Apr 4, 2019

Anyone in the group suffer from Oral Lichen Planus. I am at my wits end with all these erosive sores in my mouth. I've had two biopsies , one in the inside cheek and one under the side of my tongue. The spot under the tongue is extremely sore to touch and has been for over a year. It scares me because the soreness never goes away, sometimes it isn't as sore but nothing helps. Any home remedies for this dreadful condition?

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@bustrbrwn22

@steveandsteph Please feel free to reach out at any time. I have navigated this disease for over 2 years and our teaching hospital told me I have the most diverse case they have seen. I have learned much through trial and error because they don't even think to tell you about some of the dangers of the treatments or your body.

If I could know one thing a long time ago it would be to be vigilant of your body. Any changes might be related to LP and the sooner you get it treated, the less damage it might do to your body, e.g. hair, nails, toenails, private areas, eyes, lips, ears, nose. You get the picture. Because I am so weird and notice every little chance I will most likely keep my vision, fingernails and 1/3 of my hair. I am lucky compared to others. In a year or two I might have lost all of these but at least I have them now.

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It sounds like you have really been through the mill. I really empathize with you. I have been reading about this a bunch and I will very much watch out for everything, simply everything. This is just a horrible cluster of symptoms. What a disaster....depressing
Thank you for the info, daunting as it is.

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@bustrbrwn22

@fancyrph My derm prescribes swish and spit that only has lidocaine and a Maalox type antacid. I can't have benadryl because of dry mouth and narrow angle eyes. I just met with my derm again a couple of hours ago and she is having the hospital pharmacist to see if they can compound a swish and spit that doesn't have a steroid that might act like one to heal. I have sagging inner cheeks from too many steroids products in my mouth.

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Licorice or licorice root acts like steroids in the body but you have to be careful since it can increase blood pressure. I used it in the beginning for several months with great relief. I felt like my cells were getting support since they lacked something. Anyway, licorice was an ingredient in a product called Glutamed by NuMedica. Of course it’s not a prescription but not everything has to be prescribed to work. It is all trial & error since there is not much experience with OLP out there. There’s no real treatment & it’s frustrating to treat. I’ve been dealing with this for 8 years.

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Did you have an awful taste in your mouth along with sores in checks and mouth? They haven’t been able to decide what is causing my horrid taste for eight weeks now?

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@melanie3k

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.

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So happy for you!!! Do you mind sharing what meds you were given? I have been treated for a bit over a year. Clobetasol and a wash with an anti-rejection mixture. I have dealt with thrush from time to time but for the most part my mouth is responding

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@bustrbrwn22

@maryz. I am so happy for you! Unfortunately mine keeps popping up in new sites. In a way my years of experience with this “unknown” disease has been helpful as I am able to share my knowledge with newly diagnosed people as it appears to be a side effect for some from the covid vaccines. I don’t wish it on anyone.

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Clobetasol is what I was given as well as an anti rejection wash. I didn’t understand the severity of this disease. I ran out of Clobetasol and figured I would wait until my appointment for a new prescription. I don’t have lesions or really pain-mine results in flaming red tissue. My appointment resulted in a lecture from my specialist who said this must be consistently treated throughout life as it is a possible precursor for squamous cell carcinoma which I have had on my body. I have a new respect for this as a result.

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@microgirl

Clobetasol is what I was given as well as an anti rejection wash. I didn’t understand the severity of this disease. I ran out of Clobetasol and figured I would wait until my appointment for a new prescription. I don’t have lesions or really pain-mine results in flaming red tissue. My appointment resulted in a lecture from my specialist who said this must be consistently treated throughout life as it is a possible precursor for squamous cell carcinoma which I have had on my body. I have a new respect for this as a result.

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@microgirl it is wise to keep stocked up on clobetasol but there are other ointments left that have less steroid strength that will result in less loss of skin elasticity if your dermatologist is open to them. If you rarely have an outbreak clobetasol is fine but I tend to get them everywhere so have tacrolimus and desonide for my lips. Please watch your scalp closely. If you notice unusual hair loss report it to your dermatologist. They probably won’t take you seriously but early, aggressive treatment is critical for females to keep as much of their hair as possible to avoid permanent hair loss. LP of the scalp is lichen planopilaris. In a pinch Emuaid first aid ointment has worked for me on skin lesions. May I ask where you have LP on your body so far?

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@dancing1

Did you have an awful taste in your mouth along with sores in checks and mouth? They haven’t been able to decide what is causing my horrid taste for eight weeks now?

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@dancing1 No, I can honestly say I didn't have an awful taste in my mouth from OLP. I am so sorry you are having this issue, too! Some things just aren't fair.

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My gums are painful and raw in places. Have been diagnosed with lichen planus. Anyone else dealing with this. Told to keep mouth clean, which I have always and get teeth cleaned every 6 months, water pik, dental floss etc. Also recommended Crest Pro Health mouth wash. Anyone else dealing with this? . I am probably overly paranoid too as my spouse is recovering from tongue cancer and lymph node removal surgery. Thank you.

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@elmore

My gums are painful and raw in places. Have been diagnosed with lichen planus. Anyone else dealing with this. Told to keep mouth clean, which I have always and get teeth cleaned every 6 months, water pik, dental floss etc. Also recommended Crest Pro Health mouth wash. Anyone else dealing with this? . I am probably overly paranoid too as my spouse is recovering from tongue cancer and lymph node removal surgery. Thank you.

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Welcome @elmore! I think you have a right to your touch of paranoia, since you and your spouse have first-hand experience with tongue cancer. Being diagnosed with lichen planus (LP) of the gums may increase one's risk of certain cancers. You are wise to be diligent with following the advice you got from your doctor and to see your doctor or dentist twice a year for checkups and cleanings, or more often as directed by your dentist (or if more often would give you piece of mind).

Elmore, you may have noticed that I moved your post to this existing discussion about LP:
- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

I did this so that you can read previous posts and join a welcoming group of fellow LP members like @lovebug61 @jshdma @maryz @cmtg @bustrbrwn22 @fancyrph @steveandsteph @dancing1 @microgirl who offer tips, support and encouragement.

Did your spouse's diagnosis begin with lichen planus? I sure hope those painful, raw places calm down soon.

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@elmore

My gums are painful and raw in places. Have been diagnosed with lichen planus. Anyone else dealing with this. Told to keep mouth clean, which I have always and get teeth cleaned every 6 months, water pik, dental floss etc. Also recommended Crest Pro Health mouth wash. Anyone else dealing with this? . I am probably overly paranoid too as my spouse is recovering from tongue cancer and lymph node removal surgery. Thank you.

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@elmore Yes, there are many of us out there dealing with this, unfortunately, so I really sympathize with your pain. It is hard to adjust to oral LP if it becomes a permanent part of your life. When your gums, cheeks, and under your tongue become covered in sores they call it erosive oral lichen planus. May I ask who diagnosed you with LP? To help with the pain, ask for what's called a Miracle Mouthwash. I don't know why it isn't offered right away. This is a swish and spit that has lidocaine, antacid, and sometimes an antihistamine. A dentist or dermatologist generally prescribes this. This will allow you to floss and brush without pain, and also eat to a certain degree. It seems everyone has different triggers for their OLP. I cannot use many flavored products or those with fluoride most of the time to brush my teeth or floss with so if the Crest inflames your LP, look for a Tom's of Maine children's Silly Strawberry toothpaste. I can usually use that. If not, I use my special order Cleure toothpaste with no flavor or fluoride that I purchase on-line. I had a teleconference with a specialist on OLP at Texas A&M University and he also recommended I use unwaxed, unflavored floss. The best one I have found is OraMD online. It doesn't shred if you have a lot of dental work. For those of us with severe OLP, any dental visit can be painful and trigger a worse outbreak but it is important to find a dentist who is EXTREMELY gentle and does not press against anything in your mouth or lips. It is possible to get LP on your lips so that could become sensitive, too. It is a good idea to have cleanings every 3 months, if you can handle it and afford it. Gums being inflamed this often can cause dental issues and you want to nip that in the bud ASAP. Your dentist will also be on the lookout for signs of cancer as well. They thought the LP on my lips was cancer several times but it always turned out not to be (and many dentists have told me this is extremely rare) but a good dentist will always be watching for this. If this is a temporary, one time inflammation, the Miracle Mouthwash will be a godsend. If it becomes chronic, you will learn to adjust your eating so that you don't eat anything crunchy, salty, sugary, chocolatey, or acidic. I've gone through months with only being able to drink Glucerna out of a straw and they really taste pretty good. If you have many sores in your mouth, they may prescribe a prednisone solution to swish in your mouth to assist with healing. If there aren't too many sores, they will generally prescribe a steroid ointment for you to apply to sores individually.

I am so sorry you have been diagnosed with this and hope it contains itself to just your mouth. Please reach out if you have any questions or just need encouragement. It does become easier to deal with after time. I never thought I would say that!

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