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Monday, September 6, 2010

OLP HISTORY from Guest Writer, Marilyn

OLP HISTORY

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.

Next Posting:  SEEKING AGGRESSIVE TREATMENT FOR OLP

Marilyn Furman
Sarasota, FL

6 comments:

Anonymous said...

I too, have erosive oral lichen planus and read your articles with complete understanding and emapthy. This is my first time to talk about this disease on blog, but I felt if anyone could understand my pain, it would someone who has suffered from erosive lichen planus. I had oral squamous cell carcinoma in situ on my right cheek and gums last summer and had surgery at Mayo Clinic in Rochester, Minn. . I continue to have serve pain from ulcers on my right cheek, gums and the adhesion left from having surgery. The ulcers cause the adhesion to swell and pull the tissue tighter so that I have much difficulty eating. I have a small window to open my mouth on the left side. I also have oral lichen planus on the left side of my tongue and the left side of my mouth. In the past, my had laser surgery on my tongue and jaw but that didn't help and actually made matters worse. Presently the inflammation has entered the facial muscles on the right side of my face and I have severe facial pain that causes my ear, cheek, nose, neck, head and eye to hurt. I'm on several medications, many of which you have dicussed but I haven't had any relief from the pain. It seems that after 3 and half years of treatment I'm having more problems each year. By the way, after 25 years of suffering with vaginal lichen planus did I finally get the right diagnosis and for three years using clobetasol onitment I have found relief. Thank you for posting the latest information regarding erosive lichen planus and good luck with your present treatment.

Elizabeth Munroz said...

Dear Friend, I'm glad you found us, but sad it is under these circumstances! Thank you for commenting. I have found that taking tylenol around the clock AND Aleve, it at least takes the edge off. Also, in case you don't know there is a liquid you can swish called Lidocaine viscous. It doesn't taste all that wonderful, but at least there is some numbing for a while. There are also Lidocaine patches. They come in a fairly large size. I cut mine in half or quarters and stick them to the outside of my cheeks and neck. Since my throat and neck also hurt. I am doing much better since I've been on the Cellcept going on two years in December. It took a while but at least it is down to a manageable and healing has taken place. I am also able to open my mouth better and actually chew some regular types of food. I hope you will consider contacting me by email elizablest AT gmail DOT com. Or if you like, comment some more. I think that if others who have this know they aren't alone, it might make life a little bit more bearable. Don't you think?

Marilyn said...

Dear Anonymous,
No doubt, only those of us who suffer from OLP can possibly understand the pain and suffering. I personally have found so much support from this blog, and I hope you continue to follow it. It is difficult to find docs who really know how to treat OLP, but your complication of oral cancer has to cause enormous diability. The viscous lidocaine does help to numb, and if you mix a small amount of Maalox with it, the taste of it is better and it does not cause as much temporary burning. The Maalox has a soothing effect on the oral tissues, much as it does on stomach tissue.I use it all the time, especially before trying to eat or brush my teeth. Please keep us updated on your progress.

Elizabeth Munroz said...

I see another advantage to being in touch! I didn't know about the Maalox mixed with the Lidocaine solution. I'm buying a bottle today!

Anonymous said...

hi,

i have oral lichen planus and have been so unhappy with this disease.
No one I know has this problem and I wish I had someone to talk to.
I am also using biotene toothpaste which definitely helps. I am going to try rinsing with maalox.
I also use a dental paste when my gums are really flared which they are right now.

I wish someone would find a cure for this.

thanks
Christina

Elizabeth Munroz said...

You may contact me privately by email at elizablest gmail dot com I will be glad to help you.



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