EROSIVE ORAL LICHEN PLANUS
One Woman's Experience
I am sharing this information for the benefit of those who may have the same diagnosis. I am not a medical professional. I am just telling my story as I understand it. If you suspect you have Oral Lichen Planus, please seek guidance from the proper medical professionals. Thank you.
I didn't know, for years, that those pimply sores that came and went on my arms were lichen planus. I bought over the counter products with cortisone in them and that seemed to make them go away. I had these for years and can't tell you when they started. By 1995 I had a bad episode with my tongue peeling which went away in a few weeks. But ever since then I had a white lacey marking on the inside of my cheek inside my mouth that was bothering me. I showed it to my dermatologist. She told me by looking at it that it was Oral Lichen Planus, and biopsied it. The evidence came back positive. She gave me a prescription for Triamcinolone Acetonide Dental Paste, which I applied until it disappeared. I asked her if the sores on my shoulders and arms were the same thing, but she told me it was folliculitis (blocked hair follicles) and she insisted that I must be picking at them in order to make them so raw looking. (She made an assumption, too bad she didn't believe me when I told her I do not "pick" even though they are quite itchy!) But, she never biopsied them. Occasionally it came back and I would get another prescription. She told me at that time if anyone had OLP for more than five years they would be high risk for Oral Cancer. I didn't pay much attention to the comings and goings of the white lacey stuff. It seemed to come and go of it's own accord whether I applied the paste or not.
Then, in the late autumn of 2003 I came down with a flu-like condition, with fever and cough and sore throat. It took me a long time to get over it. By February 2004 I had a very large sore in my mouth much like a huge blister on the bottom inside of my lip. I went to the dermatologist who glanced at it and said she saw nothing wrong. My primary care physician saw me the next day for follow up on the winter sickness. She was surprised when I showed her my mouth and told her what the other doctor said. She called up the dermatologist and told her what she was seeing. So, the dermatologist ordered an ointment called Protopic, which couldn't stick to the inside of my mouth the way the previous medicine did. Eventually the big blister went away, but the whole inside of my mouth felt raw and on fire. I went several months with it like this. Many back and forth trips to the dermatologist and no improvement. I was in misery for many months. She finally turned me over to her partner. I have no idea why.
The last few years in January my right eye would flare up really bad and these mouth sores and skin sores would get worse, but since 2004 it had been constant and worsening. My Ophthalmologist ordered Restasis for the eye which I continue to use.
I have also had these sores appear in my scalp for years, only to come and go as a nuisance. Occasionally my family doctor would order Lidex gel to put on the scalp sores and they would go away. I did not associate these sores to the alopecia areata (bald spots) that I have had since age 16.
In summer of 2004 many huge sores spread over the top of my scalp. The eye was red and sore continually. More sores were on my shoulders, a few on my neck, as well as underneath, alongside, and on top of my tongue and inside my cheeks.
Eating any meal had gotten to be very painful. Even a simple piece of toast felt like I was crunching on molten glass. So everything must be soft, smooth and bland. Too much chewing is abrasive to my tongue.
Up until this time, I had very long hair. But, the sores on my head got infected and I got swollen lymph nodes going down the back of my head and neck. My hair got all sticky and matted. It was impossible to appropriately apply the Lidex to my scalp. I cut my long hair off very short as I was tired of trying to comb the scabs out, plus I was worrying that maybe shampoo residues and scalp sweating were contributing to my not getting any resolution to the problem.
Even though my doctor gave me antibiotics for the infection in my glands and the sores, I went ahead and shaved my head, as I became so desperate to be well again. After I told him I was going to an OLP specialist at a University Hospital 80 miles away, he decided to inject my scalp with corticosteroids which helped considerably, but did not clear it up completely.
Around this time the Derm (partner) doctor also injected cortisone directly into my tongue. This did not cure it but made it somewhat better: some of the tongue swelling went down and gave me back my ability to speak clearer. It also gave me a better sense of well being. At a return appointment he suggested I chew tobacco to cure it. I don't know why he said this. I told him that I had read that people who chew tobacco get mouth cancers and I would definitely NOT do this! The following appointment, he put wart medicine on my tongue. The idea was to eradicate the "irritated layer" on top of my tongue.
I am so annoyed that with medical science supposed to be so advanced there is no apparent known cause or cure for this. Just a whole bunch of lists of maybe this and maybe that.
One thing that I learned is that there is a difference between lichenoid reactions to drugs, and actual biopsied Oral Lichen Planus. However, interestingly, I have noticed that most of the medications that are suspected to cause lichenoid reactions are many of the same ones I have already proven to be allergic to, and are suspect for causing drug induced Lupus in me.
The results of the University Hospital Stomatology Specialist was that yes, it is obvious that I have Erosive Oral Lichen Planus as well as Geographic Tongue as well as a Candida infection (Thrush) as well as "some kind of inflammatory condition" beyond her expertise, as I seem to have sores beneath my tongue which have reduced my tongue dexterity.
Sometimes I have felt like I’ve been going out of my mind with the pain, even in the back of the throat and down my jaw and below the ears into my neck. There are those who insist that Lichen Planus (all forms) is caused by stress. But, which came first the stress that supposedly causes the LP or the stress of living with it? I most definitely can agree that it is extremely stressful living with this incurable condition! I have been told it can only be "controlled", not cured!
Regarding stress, all I gotta say is that I am ten times MORE stressed out, having to deal with this, than I ever was before it began flaring up. I hate it when doctors pin stress on disorders that they come across. Not too many years ago that was a standard "cause" of Asthma and Ulcers. Now they know Ulcers are caused by a bacteria, and Asthma has other REAL causes, too. Stress can certainly aggravate those conditions, or perhaps the patient’s reactions to stress. But, so many times in my life I have had stress and not had this disease. So, why now?
Several months of appointments and attempts with different medicines did not cause a tremendous improvement until I was given in December 2003, prescription for Steroids, (prednisone) taken in tablet form internally, for several months. By February of 2005 this treatment had pretty much cleared it up and I was tapered off the meds.
Funny thing, over the holiday, being in touch with other family members, I learned that my older brother has been battling "an itchy rash problem" for years, treating with allergy meds, anti-fungals, antibiotics and benzocaine to numb. He has never seen any specialist for it and his family doc continues to order the above meds. I told him about my recent problems this last year and the fact that he should ask his doctor to biopsy one of his lesions, and look to see if it is Lichen Planus, too. He lives 3,000 miles from me so we can't compare visually.
Also spoke with my 89 year old Dad on the phone this week and in conversation about his denture problems and "sore mouth", I asked him to clarify what he meant. Apparently he has had "sore mouth" problems for years and never even mentioned this to any family member let alone a doctor! (Stoic Dad, When he fell and broke his hip a few years past, he refused all pain meds as he said his pain level was never above a 2!) Anyways, turns out his "sore mouth" included sores, too, especially anytime after he had dental work done. Hmmm. I wonder if there is a test, blood test maybe, to determine if one has "familial Lichen Planus".
I just read a recent pubmed article stating that the P 63 Gene is involved in Oral Lichen Planus as well as in Squamous Cell Carcinoma, which by the way is more likely to occur if one has OLP located beneath the tongue as well as throughout the mouth.
Most of the time, I cannot tolerate to brush my teeth, rinse out my mouth, drink anything hot or cold. Can't eat or drink anything chewy, crunchy, sour, spicy, or acidic. Ordinary salt is painful. Just drinking a glass of milk is painful. There are times that my tongue cannot stick out of my mouth in a natural way, no matter how I try to stretch it out there. If feels almost as though the muscle has lost elasticity. Sometimes sticking my tongue out so that someone can look at it, and my tongue trembles uncontrollably. There are also times that this has improved and it is not as bad as all that.
I have been diagnosed with Leukemia. It is not related to Oral Lichen Planus. But, I wonder if some of the drugs I took to treat it might have contributed to the disease. An odd thing has happened. I have been given a chemo pill to take for my Leukemia called Sprycel (Dasatinib). After taking it for one month, my Oral Lichen Planus has disappeared!!!
Friday, June 9, 2017
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