Log file lichen01 for
Chat room Dental_Study_Club
-- Log on lichen01 started at Wed Dec 03 15:07:34 PST 1997
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burkhart Welcome to the chat room!
aupton Testing -- is everyone on ok?
rees Our topic today is lichen planus
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rees Hi rookie. Do you have lichen planus? Do you have a question?
aupton Testing
Di Need answer to options available for Lichen Planus and if there will be any detrimental effects
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Di Will this chronic disease eventually lead to cancer?
rees Di, please give us a little info. Have you been diagnosed with lichen planus? Do you have mouth lesions or skin lesions or both?
Di oral lichen planus just diagnosed
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rees Di, the presence of lichen planus does not mean that you will automatically get cancer later. It does mean, howver, that you should be evaluated by a health professional to determine the type of lichen planus you have and what treatment might benefit you
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Di What treatments would you recommend? Steroid rinse, burned off with laser, or do nothing?
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Kathy I presume we are just waiting to begin
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Kathy This is my first vist to a chat room, so let me know if I do something wrong.
burkhart Kathy, welcome to the chat room. Do you have lichen planus? What questions do you have?
Kathy Yes, I have. My question is the same as everyone's - how can I get rid of it? I was diagnosed about 20 years ago, but have had no problems until last February. It has been a constant battle since.
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burkhart Kathy, this what we often hear from patients who have lichen planus. Are you currently being treated with any medications?
Di Does one's hectic lifestyle/ a lot of stress cause one to acquire this disease? Am NOT a smoker!
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Kathy Last July I started a three-week program of Prednisone for three different fungi in my mouth. That worked great. However, whenever I go off the Prednisone, my tongue gets raw again. In October I started a program of 40 mg Prednisone. My tongue cleared up, I gained 40 pounds, and developed a yeast infection in my mouth. Right now I am off the Prednisone. My tongue is white, but now raw.
Kathy Correction -- typeo -- that should say NOT raw
rees Di, it depends a lot on what form of lichen planus you have. Some forms are painless and require no treatment. Those that are painful should be treated. We usually use a topical corticosteroid gel material which we think works better than a rinse.
MJ I have tried topical steriods and nothing took away the pain until I went onto 40 mg Predisone and I too gained 40 lbs. I have been on predisone for 4 months and when I start coming down, my mouth gets unbearable again.
burkhart Di, many of our patients report that stess is a factor in their condition.
MJ Stress kicks my LP into raw mouth even when on Predisone
Kathy The program that seems to work the best for me is Decadron .5 mg four times a day. I rinse two of the times and swallow two of the times. Inbetween the rinse, I apply Fluocinonide gel to my tongue. In essense, I am doing something with my mouth every two hours -- but it does keep my tongue nice and pink.
MJ Unfortunately I will have to leave the chat room. How can I get a copy of the conversation?
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Di If I am a professional with a very demanding job, what do I do to alleviate sone of the stress?
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aupton MJ this is the sysop. We can email you a copy. Contact art@tambcd.edu
Brad What relationship is there between lichen planus and human papilloma virus?
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Kathy What kind of time frame is there from keeping a raw tongue to advancing to external lesions?
mali Will the planus eventually disappear?
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burkhart Kathy, it appears that you are being evaluated and a protocol has been established. Have you considered allergic responses, lifestyle factors and medications that may be contributing to the condition.
web Type HEREany body there
mali here
Di DI
burkhart Brad, we have found no relationship which has been reported.
web are there any new alternatives on the market.
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rookie is there a relationship between lp and bad breath?
Kathy I'm not sure what kind of allergy would have been activated last Feb. The only medication I have been on is estrogen for about the last ten years. My original onset last February began when I was instructed to start using a water pic with half water and half Listerene. Two days later my tongue was completely raw and we have been fighting it every since. I am being treated by Dr. Susan Zunt at the Indiana University Med Center. She is wonderful.
aupton Dr. Rees will be on as aupton
Brad Cawson reports in his Book"Pathology" second edition that human papilloma virus was found in 80% of lichen plaus lesions--could this have been a miastake?
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mali My LP first appeared when using inhalers for the treatment of pneumonia. Correlation?
Di Why was laser suggusted as a treatment for oral lichen planus? Have seen nothing about that anywhere!
web [web] are there any homeopathic remedies
aupton Brad, not necessarily. HPV is often found in the oral tissues, even normal tissue. There really is no evidence that it plays a role in the etiology of lichen planus.
Art Does lichen plantus have anything to do with fillings in teeth. There first appeared blisters in my mouth and then later lichen planus appeared as a rash on my enire body . The rash cleared up with predsione but the blisters in my mouth remained and hurt severly when eating. Is there anything I can do to aleviate the pain and the difficultly in swallowing? Will these blisters ever clear up?
burkhart Mali, this is interesting. Do you have any other factors that were going on at that time?
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mali I had been on a lot of medication for the treatment of the pneumonia and also had bronchitis.
Brad Can one have skin lesions of lichen planus without oral lesions?
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web dr. burkhart it's adam are there any advances into finding a cure for lp.
burkhart Art, some individuals are allergic to the components in the restorative materials also have you been evaluated by an allergist for other sensitivity?
mali My Dr. prescribed the use of prednisone and I saw no improvement. She tried different mouthwashes to no avail. I was also sent to see a pulmonologist at this time who tried different treatments including the inhalers.
Brad Will chronic graft-versus-host disease mimic lp?
Art Is there anything I can use to aleviate the mouth pain while eating?
rees Mali, What you are describing does not sound like true lichen planus. Have you been tested for a yeast infection for example?
Art Could an allergy to the compnents cause lp?"
burkhart Chat room participants-Dr. Rees and I are trying to get to all the questions as fast as possible. If we have missed you, please email me and I will answer. The questions sometimes leave the screen before we are able to respond.
web would stress be a cause for lp?
mali Yes and it was negative.
web thank you.
Kathy Had to leave for a minute to answer the phone, but saw something that really interested me. I have not had a cold or flu for at least ten years. However, my LP is active right now and just got over pneumonia. Is there a connection?
rees Brad, yes one can have skin lesions only. Yes graft-versus-host disease is very similar to LP. One form of GVHD even looks like LP on a biopsy.
Brad This is a very nice service-keep up the good work-from your former Dean
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Kathy Also, I had chicken pox two times as a child, and have had shingles once as an adult. Is this all connected? One more thought however, I have never had a cold sore.
web i've got a customer is an elderly lady who suffers from lp and she is at her witts end.what could she do to aleviate this.
burkhart Web, many patients have reported a stress relationship. Also, major life events that have been stressful are reported in the literature. Chronic stress does have an effect on the immune system.
rees Mali and Kathy. We don't know of a relationship with lp and pneumonia but the medications used to treat the pneumonia might have precipitated the LP. However, that should have gone away within a few weeks of ending the medications.
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mali I have had the biopsy done for the LP. Another DR. in Columbia,S.C. diagnosed LP.
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Kathy I am not an emotional person. Do you really think Valium would help the LP? I do not want to take it.
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burkhart Kathy, why are taking valium, was this prescribed?
mali I recently was prescribed Azmocort inhaler and had an outbreak of the Lp.
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Art I have never been evaluated for allergies but did have a biopisy and was diagnosed with lp.
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Kathy Dr. Zunt prescribed the valium to take with the prednisone because I was only sleeping 2 - 3 hours a night while on the prednisone. I took the valium one night and felt like a zombie the next day. Have not taken it since.
rees WEb, many patients with lp get frustrated. It is a chronic condition and to date we don't know what causes it. We do know, however, that most patients can be helped. Some get complete remission but most of the time the best we can do is achieve a comfortable state of partial resolution. Would be happy to discuss thais further when we have more time.
web thank you dr. rees.
Art I was told that some toothpastes aggrivate the condition. Is this true and is there anything that will aggrivate or alleviate?
Kathy If I can get my tongue to just be white, not raw, without taking any prednisone, is there anything harmful with that?
mali Do you have any data regarding the percentages of patients who have gone into remission?
web yes do you.
Kathy Just saw Art's message. I have been told to use Biotene toothpaste. It's hard to find and expensive and I don't like it, but I use it.
burkhart Art, many of the patients here at the stomatology clinic who have lichen planus are allergic to toothpaste additives. We usually suggest a very mild toothpaste with minimal added chemicals.
Di Please respond to laser treatment. It was suggusted by an oral surgeon for oral L.P.
Art Kathy, thank you.
burkhart Kathy, have you seen any improvement since you started using this product?
mud Why is the first thing a Dr. wants to do when they tell you , you have LP is put you on zombie drugs as though you can't handle anything without them
Kathy No
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rees Web and Mali. We have some short term data but not long term. Shor term we can get remission about half the time but lesions tend to recur later.
web dr. rees any idea why?
Kathy When you talk about remission but lesions recurring, are you talking about the laser treatment? I have not heard of that.
burkhart Mud, has an assessment been conducted on your lifestyle, foods, products that you may be using?
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rees Di. We use the laser sometimes because we can make the lesion go away and give the patient a chance to start over. In our experience it works sometimes but not always.
mali Would you mind going over the protocol you start with or is this subject too touchy for the chat room?
web are threre certain foods lp suffers need to eat.
mud No, nothing ...just said here take these drugs...I refused
LGMaxG Type HEREI am sorry that I got here so late.
rees Web. Basically, the problem is that we can't always find the causative factor. If we could identify that and eliminate it it would probably stay away. We see that fairly often when medications or certain types of toothpaste are causing the lp
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burkhart Mud, if you are uncomfortable with the protocol that has been established for your case, you really need to find a facility that sees many lichen planus patients and one with which you feel comfortable
LGMaxG I cannot use regular toothpaste..instead I have to use baking soda. Anyone else?
mali YES
Kathy I have kept a daily log of all activities and medications since Aug, '97. I see no relationship between anything except I seem to get a little worse when leaving on vacation. That doesn't make sense to me. That should be a time when I would be at my best; wouldn't it?
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Di I was on Provera for four months. At the end of that 4-month period, signs of L.P. was detected.
mali Although my dental hygenist told me there was a buildup of plaque after several months of use.
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Art Yes, I use baking soda.
mud Dr. I do not think any protocol has been established...the dentist told me I had trench mouh...gave me antibiotics...then sent me to a periodontist who said no way you have LP...but se does not know what to do to help
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burkhart Kathy, vacations can be stressful also. Just the preparation is stressful in some cases. You must organize your schedule and get things in order to make a trip. Often, events occur during this time that cause you stress.
rees Di, In response regarding our protocol. Successful treatment requires an accurate diagnosis as the first step. That can be done sometimes in mild cases just with a clinical examination. However, if lesions are painful a biopsy is probably indicated. Once we have a diagnosis we look for potential contributing factors and use a strong topical corticosteriod get applied several times a day. Depending on the degree of response we then go on to some of the other treat
Kathy I am probably one of the most organized around when it comes to planning a vacation. I like to have a game plan. Whether we follow it or not does not matter; just as long as there is a plan to follow if we want to.
Kathy I love to organize trips.
mud What about the study to see if teeth filling material can be a factor? I started out with metal mouth after a minor filling.
burkhart Mud, if you need additonal help and the lp continues to progress, I would suggest that you seek a teaching institution that treats lichen planus.
Kathy Is there anything that can be done to eliminate the "metallic" taste in your mouth all the time?
mud Kathy, when did you have your last filling?
mali Do oral LP and dermal LP have the same root cause as far you know?
Kathy Years ago -- probably at least ten.
mud Dr. Burkhart...are you familiar with Dr. Zegarelli?
burkhart Kathy, Is your mouth very dry?
Kathy I don't notice that it is, but Dr. Zunt always says it is.
mud Kathy...guess that's not it...but I share your metal mouth
rees llergist is able to test for allergies to a lot of different things including the components of dental fillings. The tests are not 100% reliable but they are often helpful. Most of the time if a fillling is causing the problem the sores are located in the tissue that contacts the filling directly.
LGMaxG My oral surgeon is "treating" me with decadron/benadryl mixture that I swish around in my mouth as well as Lidex .o5% ointment that I apply topically. What do you think?
LGMaxG I put "treating" in quotes because it isn't really clearing it up...
Art If mouth leasions are caused by an allergy will allergy medication cure the problem or is the lp a different thing altogether?
mud my mouth is always dry
burkhart Kathy, the metallic taste may be caused by several factors.
rees LGMaxG. That treatment often works. The only way we might differ is that we think the gel form of topical steriod stays on the tissue longer than the ointment. We have no proof of that, however.
LGMaxG Is there any danger in using the Lidex for an extended period of time?
Kathy I have never been one to drink a lot of water. However, I find myself drinking more now. Is it the LP or the prednisone that cause that -- or either?
LGMaxG I will ask about the gel form--thank you!
rees Art. We don't find that most allery medication helps because the allergen is probably still there. Steroids however, are used for allergies sometimes and as you know they often work for LP.
mali I hate to ask, but do you see a causitive effect due to amalgam fillings?
mud Is there any non cortisone based ointment that I can use to sooth my sore gums?
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burkhart Kathy, increased thirst may be a manifestation of dry mouth. Are you being checked for this?
Kathy No. What should be done?
rees LGMaxG One of the advantages to that particular is that it has been shown to be quite safe in comparison to stronger corticosteroids. We use it a lot and sometimes for long periods of time. It does, however, make you more prone to develop a yeast infection.
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LGMaxG Thank you. Are all of you as frustrated as I am with the LP?
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mali One other item, a flareup occurs after the routine cleaning at the dentist. The hygenist changed the cleaning agent she used last time and the flareup was not as severe.
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rees Mud. The only ones we have found which help do have a steroid in them. There are some preparations that will numb the tissue and others that will sooth for a few minutes but they don't have any curative properties.
burkhart Mali, Some research suggested that restoration material may contribute to lichen planus. Some patients are allergic to metal . Here at the stomatology clinic we do testing for this factor.
Di How long has everyone had L.P.?
mud I am frustrated by LP..there seems to be no answers
LGMaxG About 4 years...I am 49 years old.
mali 2 and 1/2 years
LGMaxG I used to get canker sores all the time...now that I have LP I don't ever get the canker sores...what a tradeoff! : )
burkhart Mali, research does support the fact that good oral hygiene and professional cleaning of the teeth promote a good response.
LGMaxG I am almost fanatical about my oral hygiene.
Kathy Di, I was diagnised 20 years ago -- I am 53 now -- but it has only been active since last February. If stress is such a factor, why didn't I have an outbreak when my kids were teenagers!
LGMaxG : )
LGMaxG Stress DEFINITELY exacerbates mine.
mud Dr. Burkhart...thanks for all the info you sent and to all you LP people...you are not alone...gotta go...
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Di Good point, Kathy! Teen-agers are a handful! I had 3 teens at once. They have left home 10 years!
burkhart Mud, why don't you contact me by email-go back to the page and the address is there. I would like to talk to you more about your case.
mali Do you have a list of teaching centers that may be doing research on LP?
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Kathy I have a feeling this is just about over. It has been great. Thank you so much for letting me know about it. I hope you do it again. I feel like I could stay on here for hours talking to you all.
LGMaxG Are most of you relatively "stressful" personality types? Anyone else have mitral valve prolapse?
mali I do.
burkhart Mali, yes. Please email me.
rees Thanks folks. It sounds as if many of you are frustrated and concerned. That is often true with chronic dieseases. However, be aware that most people with lichen planus can be helped. Find a health care provider who knows about this disease and hand in there and things should eventually get better.
Kathy My, I am not a stressful personality. My psychology-major daughter tells me I am a type B.
LGMaxG If we e-mail you with our city and state can you recommend someone?
Di I am faced with constant stress! I also am a perfectionist, though, I am extremely organized.
Kathy How many of you are Virgo's?
LGMaxG me
Kathy I am
LGMaxG aha!
Kathy Are we starting to see a pattern?
LGMaxG : )
burkhart Thank you for the opportunity to talk with all of you. Please let us hear from you and let us know what topics we may help you discuss. If you need a center close to you, let us know. Check the page for future chat dates.
LGMaxG Please do it again. Thanks.
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Kathy Thank you very much!
LGMaxG Can we all still talk?
Di THANK_YOU!!!
LGMaxG Or will this close out?
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Kathy I'm still here -- but I don't have any answers.
Di Good idea, Kathy! Let's talk since only 2% get L.P.
Kathy We are a select group.
aupton Folks, this is art the sysop. Drs. Rees and Burkhart have left the building! Stay tuned to the page for future chats. If you would like to contact us, go to the College Web page.
aupton The room will need to be closed, so if you would like to exchange emails, please do so now.
Kathy It sounds like we are getting kicked off. My e-mail is Wkkvaughn@aol.
LGMaxG LGMaxG@aol.com
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LGMaxG Kathy..let's stay in touch...maybe we can be of some help to each other!
Kathy Sounds like a plan to me. Thanks. Bye
LGMaxG Between this and perimenopause i am going nuts!
LGMaxG Bye
Di I will write to you, Kathy
Kathy Been there, done that! Thanks Di.
Kathy Di, what is your e-mail?
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Di I don't want to put my address on here, but will e-mail you.
Kathy Okay! Bye.
Di Bye!
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-- Log stopped at Wed Dec 03 16:41:04 PST 1997