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!

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.