Thursday, July 15, 2010

Coping with OLP

One of the questions I was recently asked was how do I cope with my Oral Lichen Planus.

I don't feel that I cope all that well, as it is so frustrating not to be able to rely on your body to be okay. But, what else can I do, but live with it as best I can. And sometimes it is not always "best". If I get upset about something, angry, or crying, it definitely makes everything more noticeable. I don't know that it makes it worse as some will suggest, but I do know that I am more aware of the intensity of the pain. Plus, using the muscles in the neck, mouth area in extreme certainly puts pressure on an already very tender and vulnerable mouth!

Many articles on OLP say nothing about the debilitating effect it has on the psyche. As a patient visiting various dermatologists, dentists, and even an ear nose throat specialist, I often got the impression that they had seen much more serious conditions and my problem didn't seem all that important to them.

When I say that I really feel sick, run down, when I have a flare up or worsening of my condition, it is not believed because it is not listed as a typical symptom in the medical literature. "Average" medical cases of OLP are considered minor and usually easily treatable. So, when a someone comes along and doesn't fit the mold, I'm sure it is hard for the doctor to believe the patient.

So I have had to cope with trying to find a doctor who not only knows about Oral Lichen Planus, but cares that I suffer, and is willing to try different medications to ease my pain. And most of all, will listen and attempt to believe me. And I have to do my part to communicate effectively without whining, and giving the facts as succinctly as possible of what I am experiencing.

I have had to cope by finding other ways to relieve my pain as well. Taking regular pain meds such as Tylenol (acetaminophen) actually helps. Using Aspercreme on the skin outside, on my neck or partially on my face seems to help. I find that I cannot always relieve the pain entirely with these methods, but some is better than none.

I've had to accept that I cannot just eat whatever else other people eat. I've had to experiment. Sometimes I can eat Macaroni and cheese, or pudding, or soup. Other times I can have a more varied diet.

I've had to really open up and explain to family and friends what is going on, that it is NOT contagious, that it is NOT herpes, that I appreciate all their suggestions for remedies and nutritional changes, and I will take them into consideration. Then, if they are so interested as to offer medical advice like that, then I offer to show them my mouth in detail.

I've learned that it is essential that I know as much as I can about Oral Lichen Planus so that I can speak intelligently about it. And sometimes defensively in regards to those who think it might be caused by walking barefoot on cold floors or looking at the moon when it is full, or eating too much of a certain food, or not enough or whatever. If I have enough knowledge about the scientific facts, I'm not going to be led astray from the best possible chance for good care (and hopefully, remission).

I've learned to cope when things are really bad, by not speaking, leading a quiet life, staying to myself. If my mouth is very painful, the sores are bad and the tongue is swollen, just the act of talking aggravates things.

I let the phone message machine answer for me.

I email or text instead of calling someone.

I ask someone else (friend or family) to call if I have some business to take care of that can't wait.

I know this might not be entirely useful information for those who lead a busy life, work for a living, and have children. I'm retired, on disability and my kids are grown up and don't live nearby. So, I can "retreat" when I want to.

I often wonder how others cope with the various aspects of their OLP, especially if there's children to take care of, or a job to maintain, or other large responsibilities.

Buccal Striations


Marilyn said...

I have had OLP for 13 years. It is mostly on the left side of my mouth: inside my cheek, and the upper and lower gingiva. My husband is a dentist of many years, and he had prescribed the standard "topical" treatments over the years. Last summer things got so uncomfortable, I decided to seek more aggressive treatment from a dermatologist. I was shocked at how little they know about this. After fooling around with 2 different offices, I finally found a female derm who has been in practice for 30 years. I took prednisone last December into March (from Derm #1), and now I have the worst prednisone rebound imaginable. I can't eat, I can't sleep, I can't talk, and I can't even THINK anymore! My husband has prescribed viscous lidocaine and tetracaine "lollipops" to use as short term anesthetics, but they only last about 30 minutes. Then the agony begins again. The new dermatologist put me on a low dose of Cellcept last week. I was wondering how long it took before you noticed any modicum of relief when you started taking the Cellcept? I could have written your blogs--it is my story from front to back. I think the dosage will need to be increased, but at least this is a more aggressive treatment than anything I had, so I am trying to be encouraged. Something out there has to calm this immune system. I have also been a Type 1 diabetic for 47 years. Type 1 diabetes is also thought to be auto-immune in origin. Obviously, my body hates itself, but something here has to calm down my system. Anxious to read your next blog.

Marilyn said...

I have e-mailed my dermatologist requesting an increase in dosage of Cellcept. She started me on a low dose (1000mg/day) on July 8th, but that is not enough to "smackdown" my immune system by even a tiny bit. I know the dosage has to be increased slowly, but my next appointment is not until the 28th of July, and I really need some relief, or hope of relief, before then. I have been almost 5 months in abject agony. I can feel the erosions erupting on my tongue and roof of my mouth, and I really don't want to have it move over to the right side of my mouth as well as the left. Interesting that you mention soreness/sensitivity when you move your head or neck. I also have experienced that, and I cannot hold the left side of my head in my left hand without real discomfort. Even my scalp is sore. I cannot sleep on my left side, either. Appreciate knowing there are others who understand the misery of this problem. There is no place here in Florida that offers what you are getting at the Universtiy of San Francisco. None of the big universities have anything going on (I've contacted all of them), and my husband contacted his former dental school, Tufts University in Boston, and they were of no help, either. You are fortunate to have the teaching facility within a resonable distance.

Abby said...

My Sister and Aunt both have lichen planus and are both taking Imuran(sp?) It is to prevent your body from rejecting a kidney transplant. They both say it has totally put their LP under control. I have seen 3 dermatologists and none wanted to prescribe it for me. finally found onw who is helping some--making it tolerable I guess. Has anyone else heard of using this drug?

Elizabeth Munroz said...

Hi Abby, Imuran is one of the top of the line drugs used for severe Lichen Planus. It is also a chemo drug. I was unable to take it because I have a very rare liver disorder that makes it very dangerous for me to take it. A blood test should be administered to anyone before taking Imuran. It is called a TMPT test. See this posting I made about it: http://oral-lichen-planus.blogspot.com/2008/10/blood-test-for-tpmt-is-also-known-as.html

Marilyn said...

The dermatologists here also are reluctant to prescribe Imuran. I think that is because OLP is so rare that they rarely treat it, and are very unfamiliar with the immune-suppressing drugs that are necessary to bring it under control. I am presently on Cellcept, and only if this does not work would Imuran be my next step. I would go to a rheumatologist for the prescription and monitoring. Elizabeth is right, lots of bloodwork necessary because Imuran is processed in the liver. Keep us posted on your progress.

Anonymous said...

Hi I also have LP and have had it for several years. My dentist perscribes a cocktail mixture to rince my mouth sever times a day. I have found great relief and do not have to take any medications side I have had a stroke and cannot take a lot of medications.
The cocktail is amoxicillan liquid/ decals/lidocane. If you need more info e-mail me at bev8140@comcast.net

Elizabeth Munroz said...

Thanks for the info on the cocktail.

Anonymous said...

I have thyroid cancer and when my mouth started bothering me, I thought i has oral cancer,I went to MDAnderson and they checked it with some kind of light and told me it was not cancer but OLP. Every thing I eat makes it hurt. I feel bad all the time. I have taken medro dospack and use Orabase with kenalog and I bought a big bottle of malox to rince it out. Nothing seems to help.
Ann Morgan

Elizabeth Munroz said...

Are you still being seen by a dentist regularly for follow up appointments? If not, someone needs to keep seeing you.

Anonymous said...

I go to MDAnderson and see a doctor there about my mouth every 6 months to make sure it doe not turn into oral cancer.I just went in March and they told me there was not a lot that they can do for me,but give me something to ease the pain a little.Now my face is so tender to touch it feels almost like a bad sunburn without the heat..It is so tender from my ears

Elizabeth Munroz said...

I'm sorry to learn MDAnderson has nothing more than a little pain control for you. Have you read my whole story? I had severe erosive OLP for a number of years, and finally the only thing that worked was Cellcept. It did not cure it. No. But got it under control and now it's minimal and I have no pain. It was the Oral Medicine Clinic where I went for treatment. They do a lot of OLP research at Baylor.

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