Saturday, November 13, 2010

Going Off Cellcept

A week or so ago, I called my UCSF oral clinic doctor and updated her on a few things that have been going on with me medically unrelated to Oral Lichen Planus. We discussed when my next appointment is scheduled and she mentioned maybe we would discuss going off the Cellcept at that time. I told her I didn't see how that was going to be possible considering that even if I forget to take it for a day or two, my mouth gets all flared up again. But, still I am open to discussing it in the future.

In the meantime, because I am taking Cellcept to knock down my immune system, I am susceptible to viruses and bacterial infections and who knows what all. The changes are observable in my blood test results, usually with a lower than normal lymphocyte count in particular. There have been a few times when I have felt a little sickly, but nothing I could point a finger at and say what was the diagnosis.

But, this last week, starting last Friday night I noticed a sore throat coming on. Then, Saturday and Sunday, I felt feverish, fatigued, and full blown cold symptoms. I have had plenty of colds in my life, but never one quite so fulminate as this one. I felt like I was hit by a sledge hammer. Since I have had my flu shots, I am sure it is not the flu. Needless to say, my significant other also came down with the cold but was well enough in a day to go to work, while I was bedridden.

I went to see my new primary physician on Monday. (My old one retired.) I have been feeling pretty unsure of him so far. Aside from the OLP, I have a number of other medical problems to deal with, and my last doctor did a superior job of helping me keep a decent balance in my care. Yet, he asked the right questions about my symptoms and immediately ordered anti-biotics. This is the same thing my old doctor would have done under the circumstances, simply because the Cellcept might encourage the cold to turn into an infection, as I mentioned.

What surprised me, though was that he suggested I go off the Cellcept while I am sick with this cold to give my body a chance to fight it off, so I can get well.

I admit I was hesitant to consider it. After all that pain and suffering for so many years, then the best treatment for me came along and the Cellcept has put my OLP to rest quite well and made life more tolerable. Do I want to go back to that? I really struggled with the idea.

However, in the past, I have had some terrible infections for other reasons, and weighing out my options, it was clear to me to go ahead with the plan.

Oddly enough, I have now been completely off the Cellcept (no titering down) since Monday. So, here I am going on the sixth day and have no signs of an increase of my OLP symptoms. Everything is as clear as it was before I got sick.

I wonder if my body is so busy fighting off the cold that it can't be bothered with attacking my mouth. Or is it just a coincidence and this is one of those "naturally occurring remissions" I've been reading about that others seem to have.

I am including a picture here of one of the times that my mouth was flared up.

Tuesday, November 9, 2010

Stress and Oral Lichen Planus

Oftentimes, patients are told that OLP is caused by or aggravated by stress. I understand where this idea comes from when I look at medical articles that say the same thing.

It has been a source of major frustration for me to accept the idea that stress is a cause or contributor to OLP. After all, there are plenty of times life is stressful for all of us and it does not bring on OLP. There have been plenty of times when I've gone through major stress and not have a flare up of OLP. In fact, I have found the stress in my life increases when I have an outbreak of uncontrolled OLP.

Not too long ago I realized that the kind of stress that might trigger an episode of OLP in those predisposed to it, would be of a physiological nature.

Picture shows OLP involvement in the soft palate, the tonsil, uvula, and the retromolar pad. This was very painful to endure at the time.

Here is an abstract of a new article I found interestingon the relationship of "oxidative stress" to Oral Lichen Planus.

Evaluation of oxidative stress and antioxidant profile in patients with oral lichen planus

The aim of this study was to assess oxidative stress and antioxidant profile in patients with oral lichen planus (OLP) using serum and salivary samples and to compare these biomarkers in a group of healthy subjects.

Patients and methods:
Twenty-one recently diagnosed patients with OLP and 20 healthy controls with matched periodontal status were recruited to the study. Total antioxidant activity (TAA) and lipid peroxidation product malondialdehyde (MDA) in both serum and saliva were determined. Univariate comparisons between the two groups were made for quantitative and categorical variables to determine any significant differences.

In OLP patients, total antioxidant defense (TAA) was significantly lower than that in healthy subjects in their serum samples (P?=?0.01). Salivary MDA levels were significantly higher in the OLP group compared with healthy subjects (P?=?0.03). A significant correlation was found between serum and saliva TAA estimates in patients with OLP (r?=?0.714 and P?=?0.0001) and in the control group (r?=?0.69 and P?=?0.001). Significant correlation was also found between serum and saliva MDA values in control group (r?=?0.464 and P?=?0.04). A significant inverse correlation was found between salivary MDA and TAA values in the control group (r?=?-0.598 and P?=?0.005).

The findings of this study suggest an increased oxidative stress and imbalance in the antioxidant defense system in biological fluids of patients with OLP. These findings may reflect the disease phenomenon of OLP rather than a causal effect and their role in pathogenesis and transformation of OLP to cancer, if any, needs further elucidation.

PMID: 21039889

Medline AbstractJ Oral Pathol Med (2010)

Evaluation of oxidative stress and antioxidant profile in patients with oral lichen planus.
S Ergun, SC Trosala,
S Warnakulasuriya,
S Ozel, AE Onal,
D Ofluoglu,
Y Guven,
H Tanyeri
J Oral Pathol Med, October 7, 2010; .            

Department of Oral Medicine and Surgery,
Faculty of Dentistry,
Istanbul University,
Istanbul, Turkey

Department of Biochemistry,
Faculty of Dentistry,
Istanbul University,
Istanbul, Turkey

Department of Oral Medicine and WHO Collaborating Centre for Oral Cancer,
King's College London Dental Institute,
London, UK

Department of Biostatistics and Medical Informatics,
Istanbul Faculty of Medicine,
Istanbul University,
Istanbul, Turkey

Department of Public Health,
Istanbul Faculty of Medicine,
Istanbul University,
Istanbul, Turkey

Sunday, November 7, 2010

Esophageal Lichen Planus Abstract 2

Esophageal lichen planus is an under-recognized condition, with fewer than 50 cases reported to date.

Unlike cutaneous lichen planus, esophageal lichen planus occurs almost exclusively in middle-aged or older women who also have oral involvement.

It commonly involves the proximal esophagus and manifests as progressive dysphagia and odynophagia.

Endoscopic findings can include lacy white papules, pinpoint erosions, desquamation, pseudomembranes, and stenosis.

Histologic features of esophageal lichen planus have only rarely been illustrated. They differ from those of cutaneous disease in several respects, including the presence of parakeratosis, epithelial atrophy, and lack of hypergranulosis.

Correct diagnosis of esophageal lichen planus is difficult but bears important therapeutic implications. It is typically a chronic and relapsing condition that can require systemic or local immunosuppressive therapy and repeated endoscopic dilatations for esophageal strictures.

Esophageal lichen planus may have malignant potential, as evidenced by 3 patients who developed squamous carcinoma of the esophagus after longstanding disease.

Note: This abstract is from these sources:

Arch Pathol Lab Med. 2008 Jun;132(6):1026-9.
Esophageal lichen planus.

Chandan VS,
Murray JA,
Abraham SC.

Division of Anatomic Pathology,
Mayo Clinic,
Rochester, MN 55905, USA.


PMID: 18517264 [PubMed - indexed for MEDLINE]

Friday, November 5, 2010

Oral Lichen Planus Research Study

I frequently search for information on oral lichen planus in hope that there will be some new discovery to help resolve lesions efficiently, to stop scarring, to reduce pain, to have a cure.

So far, no major changes have occurred. I guess there is not enough interest or perhaps not enough funding to make new inroads.

I guess Lichen Planus is a "turtle" disease. In the story of The Tortoise and the Hare, the motto was slow and steady wins the race. Okay, I guess patience is the answer here for patients. (pun intended).

Today I came across evidence of a new study published in the Journal of Oral Pathology and Medicine. I can't get a copy of the paper, but it appears the abstract is self explanatory.

I was once in a study similar to this in that the treatment was what most people would consider "alternative". This study used Aloe Vera. Before you roll your eyes, continue reading, please.

32 OLP patients were given Oral Aloe Vera to apply directly in their mouth. Another 32 OLP patients were given a placebo, which means they did not get the Aloe Vera. This was done to compare the results, to determine if Aloe Vera would be useful for Oral Lichen Planus.

It didn't work for everyone. But, the percentages were considered good in that it worked for some, and in comparison to those who used the placebo they did better.

What bothers me is that like many research studies I've read about I think that they didn't continue it for a long enough period of time. I doubt very much that the 32 who were taking the Aloe Vera were not all in the exact same condition. Some may have been lighter cases.  Some may have been severe cases. This is not mentioned in the Abstract. So, my thought is if those with more severe cases were given more time, perhaps they would have had more improvement.

These are the authors of the study

N. Salazar-Sánchez
P. López-Jornet
F. Camacho-Alonso
M. Sánchez-Siles

This is their institution
Mariano Sánchez-Siles
Clínica Odontológica Universitaria
Medicina Bucal
Hospital Morales Meseguer
Murcia, Spain

This is the Abstract

Wednesday, November 3, 2010

Oral Lichen Planus Lower Lip


Please note: These pictures are not of my current condition which is greatly improved. I have placed them here for those who might want to see an example of one form of OLP on the inside of the lower lip.

Tuesday, November 2, 2010

Cure for Oral Lichen Planus

I am getting ready to go tomorrow to see the doctor about my mouth. I've been looking through pubmed to see if there is anything new published.

It came to mind how many times I have had to explain this condition to family, friends and sometimes complete strangers.

"Oh, you got mouth sores? Rinse with saltwater and it will go away."

I'm not the kind of person who just shuts up, after a comment like that. I don't call anyone ignorant, or anything like that. I just tell them that these are not normal mouth sores. They are an autoimmune condition and incurable, though treatable. But salt rinses, or baking soda, or vinegar, or peroxide are not going to cure it. If those good old fashioned home remedies were going to cure it, I would have been cured a long time ago, because I have tried them all. People mean well when they offer such advice.

I mean well when I tell them the facts about oral lichen planus.

I have been inundated lately by all these snake oil salesmen. You know what I mean. The quackery that is best sold under the words "miraculous cure", or "the secrets doctors don't want you to know".

Why do people fall for such crap? Well, what can I say? In my desperation, I have tried all the home remedies that have been suggested to me. I have tried many of the ideas posted on questionable websites. I've considered the ads in the back of magazines, the ones that guarantee a cure. I've tried all the "secrets" but, I don't pay money for them, as I don't have it to pay. But, I think about others in my situation who may have the income to invest in quack cures. How much time and money do they put to it and avoid real medical treatment?

And you know what gives a little bit of veracity to some of those quack cures? It is not that they work, but that it just so happens to be a time when a person goes into remission naturally, just when they have been self treating with whatever the quack cure is.

You wanna buy a quack cure? I got just what you want. Send me a check for the largest amount you can afford, and I will tell you the secret ingredients to cure you not only of your oral lichen planus but all of whatever ails you! And I'll take your money to boot! (Only kidding, of course!)

I'll give you a hint of one of the most potent ingredients of my magical cure. It is the tip of the pelage from the rare species, Felidae Felis Catus, which is mixed with another secret ingredient, a powerful antiseptic, antibiotic, anti-microbial, anti-allergenic, anti-oxidant known as oil of Squamata Serpentes.

Please understand tongue in cheek doesn't read well, or is as well understood, as when face to face. So to verify: I am NOT selling anything on this site. No magical cures. Nothing that is too good to be true. No medical secrets known to the ancients. Nothing! What I am giving away free... is COMMON SENSE!

Believe me, if they had a cure for oral lichen planus, the pharmaceutical companies would have patented it by now, and everybody would be happy. Them making a name for themselves in the medical world and us giving them money for their cure for Lichen Planus.

By the way,  pelage from Felidae Felis Catus means tongue of the cat. Oil of Squamata Serpentes means snake oil.

I am in a sarcastic mood this evening. Aren't I? I guess I can afford to be, as my mouth doesn't seem to be in too much distress right now. It's raw on both sides of the tongue, but not terribly painful. I can chew food and swallow without too much trouble. Hot and cold are not enjoyed, though lower heat and warmer cold are fine. Top of my tongue is white coated and has typical striations as well as what I call "bald spots", where it looks like the cilla have disappeared from my tongue. The lips are spotted and behind them, the mucosa are blistered a bit. My gums are pink, but deep red/purple at the base. Aside from all that, I am way better than I was in August.

Can't wait to see the doctor tomorrow and see what she says.

I am reposting this from November 20th 2008 as requested by a fellow sufferer who was taken in by shysters offering her a cure.

Wednesday, October 27, 2010

Brushing Teeth

I didn't know to use a smaller toothbrush, but knew about softness. They say not to scrub, but the demonstrations shown definitely look like scrubbing to me! My mouth would not take such abuse. I have to be gentle even since I'm well healed now.

Saturday, October 23, 2010

Esophageal Lichen Planus Abstract

Esophageal lichen planus is a rare condition, and although the majority of cases occur in conjunction with lichen planus at other sites, the endoscopic features are often misinterpreted resulting in a delay in diagnosis.

We report a series of five patients presenting to our unit between 2005 and 2009. All five patients were female and presented with dysphagia.

Endoscopy demonstrated proximal esophageal stricturing in four patients.

Characteristic histological findings were found in four patients.

Lichen planus was diagnosed at other sites, and preceded gastrointestinal symptoms, in all patients; five had oral involvement, two had genital involvement, and one had dermal involvement.

All patients received proton pump inhibitor therapy without demonstrable benefit.

Administration of oral fluticasone proprionate resulted in symptomatic improvement in three patients.

Note: this abstract is from the following sources

Dis Esophagus. 2010 Oct 13. doi: 10.1111/j.1442-2050.2010.01120.x. [Epub ahead of print]

Fluticasone propionate for treatment of esophageal lichen planus. A case series.

Donnellan F, Swan MP, May GR, Kandel G, Marcon NE, Kortan PP.

Centre for Therapeutic Endoscopy and Endoscopic Oncology, St. Michael's Hospital, Toronto, Canada.

© 2010 Copyright the Authors. Journal compilation © 2010, Wiley Periodicals, Inc. and the International Society for Diseases of the Esophagus.

PMID: 20946136 [PubMed - as supplied by publisher]

Friday, October 22, 2010

Oral Lichen Planus Lower Lip and Corner of Mouth

Oral Lichen Planus Discussion

The International Oral Lichen Planus Support Group at Baylor College of Dentistry held a "Webinar" yesterday where Dr. Nancy Burkhart and Dr. Terry Rees answer questions regarding Oral Lichen Planus.


Oral Lichen Planus Lower Lip

Tuesday, October 12, 2010

OLP and Thrush

Oral Lichen Planus itself does not produce Thrush. The treatment for it, however can allow Thrush to proliferate. It is a type of yeast that commonly infects patients when their white blood cell counts are low.

Thrush is a fungal infection (mycosis) usually seen in the mouths of babies. It also known as Candidiasis which usually appear as patches of white. It can be painful and needs treatment with a prescription antifungal medication.

Thrush is often seen in patients with OLP because of topical, injectable and systemic treatment.

Saturday, October 9, 2010

It's No Wonder Why

An article I read today regarding Lichen Planus, which helps me to understand why most clinicians do not think OLP is all that much of a problem.

"Pain and burning sensation have been associated with the erosive form of oral lichen planus. Nevertheless, the lesions can also be asymptomatic. In 15% to 30% of the patients with lichen planus, oral lesions can be the sole manifestation of the disease"

Photo of Oral Lichen Planus Dorsal Tongue

Saturday, October 2, 2010

Fifteen Million with Lichen Planus?

Just ran across another article stating that Lichen Planus affects 1 to 2 percent of Americans. That might not seem like very much. I looked up the population of the United States which is approximately 307,006,550.

Two percent of that equals 6,140,131. That's six MILLION and some change. We're not talking pennies here. These are people estimated to have a diagnosis of Lichen Planus.

I wonder... Do they mean that 2 percent of the population are diagnosed each year? If so, then there are a lot more of us out there.

According to one medical article 25 percent of all Lichen Planus patients have Oral Lichen Planus. That would suggest there are 1,535,032 (a million and a half) people with Oral Lichen Planus. That's equal to the estimated population of San Diego in 2009.

When you look at it this way, does it seem such a rare disease?

I don't expect the miracle of the sudden discovery of a cure for Lichen Planus. I'm too realistic to have much hope there is a lot of research funding. So, it sits on the back shelf and the same old comments about causes and symptoms and possible treatments keep getting published. Oh, how I wish there were a breakthrough.

Sometimes I wonder how people managed with the diagnosis a century ago. In fact, how did they manage for all the centuries mankind has had to deal with it.

I imagine someone back then trying everything in their culture to rid themselves of the disease. Did they eventually die from dehydration because they couldn't swallow water? Am I going to far into the negative thinking that way?

I wonder if animals suffer from Lichen Planus???

Photo was taken in February of 2008 and demonstrates loss of papillae

Friday, October 1, 2010

A new update from Marilyn

Well, so much for my excitement that adding 30mg daily of prednisone would ignite faster healing. Consulted with my family doctor, and have increased the prednisone dose to 40mg daily as of 09/21/10. Also just had some blood work done to track the lymphocytes (white blood count), since I also take 3000mg of Cellcept daily.

After 10 days of the higher daily dose of prednisone, my face is beginning to swell (typical of prednisone), and every afternoon about 4 PM, I feel a huge surge of heat and a general feeling of malaise, which I assume is also from the increased dose of prednisone.

The plan now is that I will remain on this combination dose of prednisone and Cellcept until resolution occurs of both the ulcerations and erosions of my oral tissues, however long that may take. A set timetable is not practical, and only has the potential to initiate another prednisone "rebound." If and when I get to a comfortable resolution, only then will I begin a taper off the prednisone, and only 1-2.5mg at a time, probably in one month increments. It may take me a year to get to a reliable "maintenance" dose, but I see no choice.

I already have reduced kidney funtion from 47 years on insulin as a type 1 diabetic, and have some damage to my left optic nerve from glaucoma. The predisone will only add damage to these two situations, but the OLP is the crisis now, and I'll have to deal with the pred side effects as they occur.

I am continually amazed at the excruciatingly slow pace at which these 2 very strong and dangerous immunosuppressing drugs work on the oral tissues. I have been on Cellcept since 07/08/10, and seen little if any result, which is why the prednisone was reintroduced. I still can only open my mouth minimally, still have painful erosions (although the bloody ulcerations have diminished in size, and are being very slowly replaced by some ugly, hard scar tissue). The exterior of the left side of my face is quite contorted from the internal scarring, and when people question my appearance and inability to move the left side of my face and mouth, I just tell them I have some paralysis. No point trying to explain this thing--way too complicated.

Hopefully, over the next 30 days, I'll see some marked improvement of the oral tissues. Can't imagine being like this for the rest of my life!

Sunday, September 26, 2010

Is it Stress? Forgetfullness, or overdoing it?

A week of stress, intense focus and needing to scurry about without sufficient rest or sleep can take it's toll.

So many articles on Oral Lichen Planus warn that stresses can "cause" OLP, and I have argued that point repeatedly.

Much of our lives are filled with stress. If it is so that stress causes OLP, they why doesn't everyone have it? I can agree that stress can contribute to a flare up, or contribute to worsening symptoms, but I still cannot accept that stress causes OLP!

That being said, here I am with an annoying flare up. But, let me be clear about this. Not only did I have considerable stress, this week, but I forgot to take my Cellcept several times.

After all, stress makes me a bit distracted and forgetful.

Soon, I realized that my tongue felt swollen, and i had a sore throat sensation in the right side of my mouth. This is where most of my nasty flare ups reside! I grabbed my magnifying mirror and saw that I also had a small angioma on top of my tongue. It comes and goes.

So here I am with raw mouth, getting religious about taking my meds, and admitting the possibility that stress can contribute to flare ups.

Wednesday, September 22, 2010

Seeing Some Improvement

An Update from our guest, Marilyn:

Over the past 2-3 days, I have started to see some improvement in my oral tissue. The more recent ulcerations look like they are beginning to heal a bit, and I have not had any new outbreak of ulcerations for a good while.

Where the ulcerations on the inside of my cheek are healing, they are being replaced by that whitish film that is so indicative of lichen planus, and then sometimes there is an "erosion," not an "ulceration" underneath.

My tongue has been involved more so than before. I have erosions on the top, tip and under on the left side. I find that the "sore" tongue is even more annoying than the inner cheek tissue because the whole tongue muscle is so very painful to move. It makes you not even want to open your mouth for any reason.

Some places along the inner cheek and inside the upper and lower lips are just looking like normal pink oral tissue, and I am so grateful to see that!

I am taking 30mg of prednisone daily along with the Cellcept, and it is obviously the pred that has made the healing process begin. I am going to start to taper down on the pred this next week, maybe on Thursday or Friday, and see if I can still control the healing without the higher dose.

This time, I plan to reduce the prednisone more slowly than before, going down by 2.5mg at a time over weeks and weeks. I think because of the horrible prednisone rebound that caused me to get to this place, I need to taper off over the next 6 months as opposed to 2-3 months. As soon as I see the "rebound" coming back, then I know I need to be on the previous higher dose of pred to control the outbreak. Bad thing is that the pred has so many undesirable side effects that you kind of trade in one problem for potentially another.

The swelling inside my mouth has gone down a bit, however, there is still quite a bit of inflammation, which the prednisone should help. I notice that my need for anesthetic (Viscous Lidocaine) is diminishing slightly.

I have started taking Aleve to control some of the pain systemically. The Aleve works so much better than oxycodone for oral/facial pain. I take it more often than recommended in order to keep the pain cycle from spiking.

I can see that this process will take a while to even remotely become managable, but I feel I may have started climbing out of the deep hole and not descending farther into it. But if it eventually works in conjunction with a reasonably low dose of prednisone, it will have been worth it.

Sunday, September 19, 2010

Blood Test Results

In Thursday's post I mentioned my surprise when viewing recent blood test results. Since then, I've had another set of results come in and they concern me more. While taking Cellcept it is imperative to have frequent blood tests to determine it's affect upon my immune system. My regular doctor has been ordering these blood tests as it is difficult for me to travel to San Francisco all the time to have the blood drawn. Why not have it drawn here? Much easier to keep track this way and actually learn what the results are instead of them getting lost in the big city hospital system.

These newest results show Lymphocytes at half of normal. Basophils two times above normal and Neutrophils somewhat elevated above normal. My liver enzymes are above normal but this is not a result of the Cellcept but from another underlying condition I have.

Lymphocytes are a type of white blood cell that helps the body fight off infections. I knew that by taking Cellcept it would reduce my lymphocytes as a natural part of it's job... to calm down my overactive immune system. I also know that this makes me more susceptible to infections as I mentioned in Thursday's post.

I tell myself the trade-off is worth it. What's a little cold or flu in comparison to chronic erosive oral lichen planus? Huh? I tell myself that every day, every time I take my dosage of Cellcept. But, in the last week or so, I have felt weak and tired, more than usual. A lot like before when I was in a full blown episode of severe lichen planus. I cannot, for the life of me, figure out how opposite ends of the spectrum of the immune system can have the same deleterious effect!

Needless to say, I will be discussing this issue with my primary care physician, who is an oncologist and internal medicine doctor. If anyone could tell me about how a drug can decimate the immune system and what kinds of opportunistic infections could jump in there, she can. I hope it will be a simple matter of having an antibiotic prescription ordered.

Note: Digital Art Photo is of my cat's collar as he moved away from camera.

Thursday, September 16, 2010

Common Sense Forgotten

I've been taking Cellcept for my Erosive Oral Lichen Planus and have had improvement over these twenty months. During this time, I have had repeated blood tests to see how much the Cellcept is affecting my blood. Since it is normally used for transplant patients so that they wont reject the foreign body part, it's to cut down the efficiency of the immune system.

In Erosive Oral Lichen Planus the immune system perceives the tissues of the mouth to be foreign. Like an infection, it is attacked which puts the immune system into hyper drive. Therefore taking Cellcept (Mycophenolate) will help calm the immune system down and stop it from attacking the mouth.

It's common sense that if one is immune compromised like this that one should take certain precautions to avoid unnecessary infections. At first I was extrementy careful and followed the protocol closely. But, as time has gone by, I have been careless.

I just got some blood test results back which shocked me out of my complacency. So, as a reminder to myself and others here are some steps to prevent infections:

    * Stay away from people who are sick, and avoid large crowds of people.

    * Avoid certain kinds of foods that can expose you to bacteria, such as uncooked foods, fresh unwashed fruits and vegetables.

    * Wash your hands often. Keep them away from your nose, mouth, and eyes.

    * Brush and floss your teeth and get regular dental care to reduce the risk of infection in your mouth and throat.

    * Ask your doctor whether you should get a yearly flu shot and the pneumonia vaccine.

It's important to know the signs of infection, such as fever. Call your doctor right away if you think you have an infection.

Wednesday, September 15, 2010

A Quaint History of Lichen Planus

Here is a PDF file of an article written and publshed in 1941 whereby a patients diagnosed with Lichen Planus were treated with Vitamin B complex.

Oh, if only this were the cure!

However, I am placing the link for this article for the sake of historical medical interest for anyone who would like to read it.

Monday, September 13, 2010


Written by Guest: Marilyn Furman

By August of 2009, my Oral Lichen Planus had become so inflamed and partially eroded that I decided I could no longer manage it on my own with just the assortment of topicals I had in my toolkit. The clobetasol and tacrolimus did not seem to be making any difference, and it was time for a more aggressive therapy.

Technically, Lichen Planus in whatever form or wherever located is a “skin,” or dermatological problem. Actually, it is for an Oral Pathologist to deal with, but those specialists are few and far between, and are for the most part located at Medical Schools and teaching hospitals in urban settings. I live on the Gulf Coast of Florida, just south of Tampa Bay. Not considered a big urban area like New York, Boston, Chicago, etc.

I got a referral to a dermatologist with great credentials from Emory U in Atlanta. A young gal with both an M.D. and a Ph.D. I figured she might have seen something akin to my problem while in Atlanta, so I started with her. I’ll call her Derm #1, for the record.

When I presented my problem mouth to her, she immediately identified the OLP for what it was, and got out her textbook to look for possible solutions. She arrived back in the treatment room with several therapies highlighted in yellow marker. That’s when I realized that she had only seen pictures of OLP, and read about OLP, but never laid eyes on a “real” human being with OLP.

The initial suggestion was to try a drug called Soriatane. It actually is a drug for psoriasis, but some people apparently had had luck in treating OLP with it. Before we could begin with this rather serious drug (with significant side effects including some hair loss, no alcohol, etc.), I was referred to a rheumatologist for extensive blood work. I had to be cleared for Hepatitis, and markers for things like Rheumatoid Arthritis and Lupus. The list of things they checked went on for pages and pages. Also had to have a bone density test, because many of the therapies that are used for OLP can interfere with calcium absorption and encourage osteoporosis. So, I passed all tests with flying colors, and began 3 months of daily Soriatane (10mg) drug therapy.

That was in early September of 2009. By early December, there had been no improvement whatsoever in the OLP. If anything, things were worse and more painful. The erosions were still at a minimum on the inside of my left cheek, but around my upper and lower molars things were looking awful and brushing was causing misery, blood and tears. 

Derm #1 agreed that the Soriatane was useless in my case, and she said the tried and true treatment for OLP was Prednisone. I began a daily dose of 40mg of Prednisone around the first of December, stayed at that dose for 3 weeks, then tapered down to 30mg a day for three weeks, then 20mg a day for 3 weeks—you get the picture.

At 40mg a day, I really noticed a wonderful change in the damaged oral tissue. Not only that, the other advantage was that my arthritic knees felt wonderful and I had the energy of a teenager. Prednisone does that, you know. It also has about 100 really detrimental side effects one of which is raising blood sugar.

I have been a Type 1 diabetic for 47 years, since I was 17, and on an insulin pump. Although my general feeling was “wonderful,” I found I was going through a bottle of insulin a week, and still having difficulty keeping my blood sugars below 160. No matter how much insulin I took, I needed more. However, I felt in the short term that it was worth the effort because my mouth was clearing up nicely, and I was able to have some long awaited dental work done in early January, 2010. I dutifully tapered the Prednisone down to 30mg a day for three weeks, then to 20mg a day. By the middle of the 20mg dosage, I noticed the inflammation returning and some small erosions beginning again. The largest erosions had never completely resolved, and now I was getting back to where I started. At 10mg a day, the whole mess was returning quickly.

When I went back to Derm #1, she noted that it looked like Prednisone “rebound,” which we really had not discussed. Derm #1 gave me a prescription for oral Metronidazole, after deciding that another treatment, Methotrexate had little data to suggest a good result. Before filling the prescription for Metronidazole, I researched the drug and found that it is primarily an antibiotic for protozoal and bacterial infections.  Admittedly, I was disappointed in the choice of therapy, couldn’t find much evidence that it worked on OLP, and actually threw away the prescription.

Here’s where mistakes were made:
a) by me deciding that if I had Prednisone “rebound,” then perhaps I should just do nothing and let the “rebound” run its course and I would go back to where I was when I started in September of 2009. Major mistake by me!

b) by Derm #1 in not explaining or perhaps even knowing because of lack of experience, that if you don’t address the “rebound” immediately and effectively, the autoimmune system which the Prednisone had suppressed, would go on a “rebound” rampage. Major mistake by Derm #1.

I chose not to return to Derm #1 because I felt she had no experience with OLP, and getting info from med school textbooks was not enough. I allowed myself to drift for nearly 2 months, and things just got worse and worse until the pain was so severe I couldn’t eat, couldn’t talk and couldn’t sleep. My husband, the dentist, prescribed viscous lidocaine mixed with a bit of Maalox (soothes the burn on oral tissue) as an anesthetic.

I was so miserable and had no idea where to go next until my retinologist  saw how awful I looked at my May, 2010, appointment. He gave me the name of a well-established dermatologist in practice for 30 years. I went to see her, Derm #2, and she immediately identified the “rebound” effect. Her take was to start on a systemic drug called Griseofulvin, which is actually an old drug used as an anti-fungal. A renowned Oral Pathologist at the Mayo Clinic in Rochester, MN, had used this drug in the treatment of OLP, and achieved a decent level of success. Problem with Griseofulvin is that it has the potential to cause liver damage.

I took the drug for about a month with no result, and I was getting concerned about liver damage.  I also was trying to use the clobetasol ointment and tacrolimus as well, but putting those topicals on eroded, open sores was just too painful.

By the end of June, 2010, I was a painful, emotional, psychological wreck with few options…or so I thought.


Sunday, September 12, 2010

Update from Marilyn - Addition of Prednisone

Hi, this is Marilyn updating:

I started 30mg/day prednisone this past Tuesday, and this morning for the first time I think I am seeing a bit of improvement.

One thing I have noticed is that I have had no "new" outbreaks of erosions for a while. The ones I have are so painful that I forgot to pay attention to the fact that there have been no "new" eroded areas.

I plan on dropping down to 25mg/da of prednisone beginning this coming Tuesday, then waiting 2-3 weeks to go down to 20mg, etc. My NP and I decided I really need a very long tapering off the pred this time in order to let the Cellcept get a good grip. I don't mind being on a low dose of pred as a maintenance if necessary, just to get controlled.

I realize the biggest mistake made was by the dermatologist I was seeing last Spring when I came off the pred completely and the rebound had started. She should have stepped in immediately to address the rebound before it got so out of control and my auto immune system went on such a rampage. I am going to pay the price for that lack of intervention for the rest of my life. 

The past 6 months of chronic erosion(s) has left permanent damage to my left side cheek area, and there is no doubt I will have significant scar tissue. I need some dental work, too...mostly an intense prophylaxis and my perio pockets checked and cleaned out. Fortunately, I've never had periodontal problems, but this last 6 months of very poor dental hygiene may cause some. Hopefully, no decay has started anywhere, either.

I sympathize with Elizabeth on the wisdom teeth. I still have all 4 of mine. They are all in a difficult position to extract, and all of them are deeply embedded in heavy bone. Removing them would be a nightmare for both the oral surgeon and me, not to mention healing and possibly initializing another horrible OLP flare up.

I am concerned about my ability to open my mouth, however. I am assuming that when more of the erosions, swelling and inflammation goes away, I'll be able to at least get my mouth open enough to eat normally. When I try and open to a more normal width right now, I feel pain and "pulling" on that tissue. I know I'll always have to cut most of my food into small pieces, but I don't want to live on soup and ice cream for the rest of my life!

Friday, September 10, 2010

Elizabeth - Follow up Visit to Doctor

Tuesday I went to San Francisco to see Dr. Piri. She checked on my mouth and as I knew, it looks really good with some mild redness in the front sides of my tongue, and a little bit of striation underneath tongue. These areas cause me little or no pain or burning. I just have to be careful if food I eat in a restaurant doesn't have hidden spiciness. So anything that comes with a sauce or gravy, I always ask to have on the side so I can carefully "test" them.

right lateral in back by molar

The only problem area is the same worst place I've had all these years located behind the right bottom back molar. I have only seventeen teeth and am missing all my molars on that bottom side. The only one remaining is my wisdom tooth, which was never pulled. Unfortunately, because it is so far back there it is hard to clean, and difficult to get the Clobetasol into for healing to take place. At one point when things were so swollen and the scar tissue appeared to be over growing my tooth, we talked about having it extracted. At the time, I was in so much pain, and couldn't open my mouth wide enough to toleration having it done, that I never got around to making an appointment. I am glad I didn't have it done. The swollen scar tissue has receded and I am able to use a bent Q-tip to lift some of the yucky stuff that lurks there and at one time caused infection.

 tongue a little swollen with raw patch on left

Part of the problem also, is that the tongue back there is also still sensitive and I think a little swollen as I have a hard time swallowing on that side. Though not erosive at this time, it is still painful but not burning. I've had worse, but I wish it were better. I constantly have the feeling of a sore throat back there and I can feel it from the outside on my neck, under my chine and ear. Sometimes I put a Lidocaine patch there to numb it for relief.

 right lateral showing small blister and vein

My salivary glands are still swollen and rock hard. I don't know if they will ever go down. That area hurts to touch.

I will now be referred to one of the dental clinics through UCSF in order to have some much needed dental work done. Since I have no insurance this will be a slow process where I will probably only be able to get one tooth worked on at a time unless they have some kind of payment program where they bill me and I pay as I can. But, at least I will have some expert care, and can begin to feel more normal. I'd like to save my front teeth as soon as possible, then get a bridge for the upper left side. I think my bite would improve considerably.

top of tongue striations

I asked how would I ever know if there were changes indicating cancer. What would I need to look for. She said you really cant tell in the early stages and that is why she wants me to keep coming back regularly for check ups. I asked what kind of treatment.

Surgery? Yes
Chemo? Yes
Radiation? Yes

Apparently the radiation is the harshest. If I think I have problems with my mouth now, I hope I never need to have radiation as it ruins everything. I don't even want to think about it. But, I am glad I asked. I like to know the facts, even if they might not ever apply to me. Better safe than sorry. I had actually been thinking of finding someone here where I live to go to in case I ever have a bad flare up again. I was thinking I could avoid the long trips to SF. But now I realize it's best I keep going up there. Dr. Piri knows my mouth, and would recognize subtle changes. My own Ear Nose Throat doctor who I see for allergies, often asks to see my Oral Lichen Planus and he always says, "All gone! That's good!" And I know he doesn't really know what to look for unless it's raw, open erosive and completely fulminant. Same with my asthma doctor. Though both are concerned about it, I have had to show them pictures of how bad it got, and explain what's still bothering me.

 under the tongue striations

One wonderful thing that has happened by my keeping these two informed of progress and treatment is that I have learned since I am no longer taking prednisone I can return to having my allergy shots! Apparently Cellcept works on a different part of the immune system than prednisone does.


Note: I took the pictures myself by holding a hand mirror in front of me and looking into the camera. I am thrilled that I have so much more muscle control now. In the past when Dr. Piri was taking pictures my tongue would vibrate because I didn't have muscle control. Plus, I can now open my mouth wider.

Monday, September 6, 2010

OLP HISTORY from Guest Writer, Marilyn


1. Original Diagnosis:  Skin biopsy done 12/02/1997 revealing Lichen Planus

I had skin lesions on my back and torso. They were small, itchy, flat lesions with thin, whitish-gray, filmy coverings. If I  scratched off the coverings, then small, red, bloody sores were beneath.  Initial treatment was Clobetasol Propionate Gel, 0.05%. After about 3 months, the skin lesions disappeared and have not returned.

However, Oral Lichen Planus appeared within weeks of the skin lesions. I had light “lace-like” patches on the left buccal side of the upper and lower gingival tissue. I had no pain at the time, just the lichenoid changes, which my dentist monitored closely. He had diagnosed OLP in the past, and identified it immediately.

The OLP remained quiet and benign for several years. I periodically saw flare-ups of inflammation and had discomfort around some of my back molar area on the upper left especially. But I used the Clobetasol Gel as a topical to treat them.  The dentist continued to monitor the progression at every cleaning appointment, and prescribed Fluocinolone and Triamcinolone topical when I felt the Clobetasol was not working any longer.

By 2004-2005, the inflammation was worse and now was attacking the lower left molars and the buccal mucosa (inner cheek tissue). I also noticed that ulcerations (erosions) were forming at the base of some of those molars, and experienced moderate bleeding when brushing. I found that any toothpaste with sodium lauryl sulfate, mint, or cinnamon made things dreadfully worse. Of course, no alcohol-based mouth rinses were acceptable almost from the beginning of the outbreak.  No matter how gentle I used my toothbrush on the left side, the lichenoid film would be scraped away, and the raw bloody erosion was beneath. I never brushed my teeth without blood. Started going for dental cleanings every 3 months because I knew I could not remove the plaque and calculus effectively by myself. It really had to be done by a professional. Fortunately, my husband is my dentist, so he took a very active role in the diagnosis, follow-up and maintenance of my oral tissues. He has been the only one to work in my mouth for 15 years.

An important note, when I first went to the dental office as a new patient in 1992, the initial comprehensive exam included measuring how wide I could open my mouth. They do this to determine difficulty in working in one’s mouth. In 1992, I could open 46mm. That’s a pretty big mouth! By 2007, when I was measured by an anesthesiologist at the hospital before having a hysterectomy (they need to insert a tube down your throat when under anesthesia), it was determined that my ability to open was so reduced that they had to use a pediatric tube for me! By 2009, when I had a implant done on the lower right to replace a cracked tooth, my ability to open was down to 30mm. All caused from the ongoing swelling and inflammation of OLP on the buccal mucosa. The implant surgeon referred to my left side as a “mess,” and was glad to be working on the right side. He had to work from a horizontal angle to get the  implant in because I could not open wide enough to allow the usual vertical placement. My husband had a similar problem trying to place the restoring porcelain crown on the implant.


Marilyn Furman
Sarasota, FL

Friday, July 30, 2010

Lichen Planus Trigger

Many articles and discussion about Lichen Planus revolve around the suggestion that it is triggered by stress. (not caused by stress). Needless to say, the following books might be considered helpful in understanding and reducing stress.

It's up to you to decide if these will help you.

What Happy People Know
By Baker, D. and Stauth, C.
What should I do with my life?
By Bronson P.
Don't Sweat The Small Stuff
By Carlson, R.
The Power of Full Engagement
Loehe, J and Schwartz T.
The Power of Optimism
McGinnis A L.
The Lost Art of Listening
Nichols, M.
Learned Optimism
Seligman M.E.P.
Half empty-Half Full
Vaughn, S.

I, personally do not believe Lichen Planus is triggered by stress. There are so many kinds of stress, how would one pinpoint it? On the other hand, I cannot help but notice how deeply stressed out I feel when my mouth is burning and raw open sores proliferate. Yes, that is very stressful indeed!

Sunday, July 25, 2010

Annular Lichen Planus

Annular lichen planus is a rare form of lesions which has a ring-like appearance. This has shown up in about 10 % of cases. But, they show up accompanied by the standard appearing  Annular LP usually has no symptoms.

You can go to Dermatolgy Online Journal for further information

Sunday, July 18, 2010

Actinic Lichen Planus

"Actinic lichen planus: Subtropic or actinic lichen planus occurs in regions, such as Africa, the Middle East, and India. This mildly pruritic eruption usually spares the nails, the scalp, the mucous membranes, and covered areas. Lesions are characterized by nummular patches with a hypopigmented zone surrounding a hyperpigmented center." (From eMedicine site)

The word Pruitic means Itchy.

Mucus Membranes means the moist skin inside the mouth.

Lesions are areas of tissue damage.

Nummular patches means round patches.

Hypopigmented means without color, and hyperpigmented means with above average color. So the nummular patches may have on the outside a lack of coloring but on the inside a more obvious color appearance

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

Lifestyle and Oral Lichen Planus

Due to two recent comments, I will post an update answering some specific questions posed

If you have read through previous postings, you will know that I have been dealing with an unrelenting case of Oral Lichen Planus. There are different degrees of the condition, everything from some lacy white designs on the inside of the cheeks to downright raw openings on the tongue, gums cheeks, throat, and occasionally the esophagus and lips. When the condition is this raw, like open sores, it is called Erosive Oral Lichen Planus. For some patients who have this, it can ebb and flow. There will be time periods where it will seem to disappear. Because of this, sometimes people think they are cured and occasionally attribute the new healthy looking mouth to whatever they were using to treat it.

For some patients OLP can be in remission for very long periods of time. I hope you, the reader, are in that category. Please don't think that what has happened to me will automatically happen to you.

I have not been so fortunate. One could question if I live a lifestyle of poor choices and suggest that is what contributes to my chronic OLP. So, for the record:

I don't drink alcohol.
I don't drink coffee.
I don't drink soda.
I don't smoke.
I don't partake or recreational drugs.
I don't eat spicy food.
I don't eat anything with cinnamon in it.
I don't eat anything with mint in it.

Note: It is challenging where the last two ingredients are concerned because so many things can contain them. Cinnamon and mint are supposed to be notorious for aggravating OLP, according to my oral medicine clinic doctors. And of course, I'm sure anyone reading this who had the diagnosis of OLP probably already knows spicy food doesn't help it. Even some of the mouth cleansing products that are supposed to be for people with mouth problems have mint in them!!!

From my own personal experiences, I have noticed that dry crunchy foods, such as chips, crackers, sometimes crackers, etc, aggravate my mouth. I couldn't understand it at first. Then it dawned on me one day when my mouth was doing really well. I was eating some tortilla chips. They are not a soft substance. In fact, they are very much like chomping on shards of glass! No wonder my mouth would be sore the next day.

I don't think that the original cause of OLP has anything to do with eating sharp edged food. I just think that when someone has a mouth that has been so much under attack, it is fragile and cannot handle food in the same way as other people can.

The picture below represents the lacy appearance of Oral Lichen Planus.

Wednesday, July 14, 2010



1) Actinic

2) Annulare

3) Bullous

4) Classic

5) Erythematosus

6) Exfoliative

7) Familial

8) Guttate

9) Hypertrophic

10) "Invisible"

11) Lineal

12) Muco-membranous (genital, esophagus)

13) Nail

14) Oral

15) Penphigoides

16) Perforating

17) Pigmentosus

18) Planopilaris

19) Ulcerative

20) Zosteriform

Oral Lichen Planus has 6 types: Reticulated, Atrophic, Papular, Plaquelike, Erosive and Bullous

Saturday, July 10, 2010

Response of Oral Lichen Planus to Topical Tacrolimus

I have had topical Tacrolimus as part of my treatment. Though it was somewhat effective for me, it never eradicated my lesions, and therefore was unsatisfactory. Going without eating a nutritious diet because of my mouth sores was reason enough to keep trying other medications.

Though, it is well known that Tacrolimus is very helpful for some patients, perhaps it is because they do not have such a severe case as I have had. Mine was called Erosive Oral Lichen Planus, because the sores were so big on my tongue in particular.

You might find the following article useful and informative.

Response of Oral Lichen Planus to Topical Tacrolimus

Wednesday, July 7, 2010

OLP is Chronic and Uncurable

Since the average age at onset of Oral Lichen Planus is documented to be 55 years, and it affects women more than men, it makes me wonder if male hormones would be helpful to quell the disease. This is entirely speculation on my part.

Of all the treatments I have been given over the years Corticosteroids were the most effective but not enough to keep the OLP at bay unless I continued to take it for long periods of time.

This full PDF article on research done at University of San Francisco is very informative.

Even if you don't live near San Francisco, perhaps sharing the article with your Dentist will give him or her the opportunity to make contact for further information.

Presently, with Cellcept as my main treatment, my mouth looks like this and has minimal pain.

Saturday, July 3, 2010

Keeping a Clean Mouth

I like to research Oral Lichen Planus in Pubmed. I found a recently published abstract done by researchers in Spain. The idea of the study was to determine if patients were given a program encouraging them to get better plaque control. That means brushing their teeth regularly and flossing.

I can understand why they created this study. The better your plaque control, the healthier condition the gingiva will be. The problem is that most people with oral lichen planus, especially those with involvement of the gingiva, find it challenging to even want to brush their teeth and floss.

I have to admit I am the same way. It's painful! It's inflicting pain on top of pain to brush teeth and floss! If your Oral Lichen Planus involves the gingiva, you probably already know. But, for the benefit of those who don't, gingiva is the flesh closest to the teeth, the gums.

They had 40 patients with gingival lichen planus and introduced them to a motivation-behavioral skills program. I'm guessing this means that they were educated in the necessity, encouraged to brush and floss over and over again until the patients really got involved with following through with taking better care of their mouths. It would be the same idea, I think, of teaching a child in the same behavior. This was done over a period of 4 and 8 weeks.

The result was that the patients had significant improvements in the quality of mouth health. Of course, it was recommended that more studies like this one be done to see if the program would have the same results.

At the Oral Medicine Clinic I go to at the University of San Francisco, I am always encouraged to do the same. Plus, I am to have my teeth cleaned by a Dental Hygienist every four months.


J Periodontol
2010 Jun 23
Application of a Motivation-Behavioral Skills Protocol in Gingival Lichenplanus: A Short-Term Study.

López-Jornet P
Camacho-Alonso F.

Department of Oral Medicine
Murcia University Dental School
Murcia, Spain


The picture is from the Endo Blog

Wednesday, June 30, 2010

Continued use of Cellcept for Oral Lichen Planus

I have recently returned to University of San Francisco Oral Medicine Clinic. I am still doing well on the Cellcept. I had been very hesitant to take this medication, but you can only take prednisone for so long and it seemed to me that the long term side effects of the prednisone were worse than those of the Cellcept. Presently I have been diagnosed with Osteoporosis. That is considered one of the side effects of Prednisone, though I probably wasn't taking it long enough or often enough to be the contributing factor, since I have other possible causes. I have now started treatment with Boniva and been assured that within a year's time there should be bone replacement.

Sunday, June 6, 2010

Dorsal Tongue OLP Striated Coating

I've been trying to cut back a bit on my Cellcept. It's not going to work. Just as soon as I go a few days with a lower dose, this is what happens. It's a bit more than lacy striations, I think. More like a striated coating. Don't you think?

Monday, March 15, 2010

First Stages of More than Lace

Upon request, I am posting some pictures of the early onset of the erosive part of my oral lichen planus from 2004.

The picture above shows the right side of the tongue far back with erosive patches spreading to underside.

Prior to this, I only had some white lacey markings on the inside of the cheeks.

As I posted in April 2004, when my mouth was looking like this, it appeared as if I had previously had a tongue piercing. Which I did not. The hold just appeared by itself, as if someone had taken a knife to it.

I put a cloth on my tongue in order to pull it out a bit further, like doctors do,  to show beneath where there are more markings.

Even though the  whole top of the tongue and the insides of the mouth were affected, the left side and underside of the tongue were not affected.

The tongue is swollen and speech is more garbled, but not noticeably.

Always seek the advice and supervision of a qualified licensed medical professional!

The information provided on this site has been created as an online journal only. The author is writing from her personal viewpoint and cannot guarantee the completeness or accuracy of the information displayed.

Comments to any of the entries are appreciated.