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| aupton | Greetings, Dr. Sirois, Dr. Rees, Dr. burkhart! |
| drburkhart | Hello David, welcome! |
| Sirois | Thank you - looking forward to the discussion |
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| drburkhart | Hello Don, glad that you could join us tonight. |
| drrees | Type HEREHi Nancy and David, it looks like don is surrounded by faculty so far so he should be able to have at least some of his questions addressed |
| don | Type HEREThanks! |
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| drburkhart | JBS, have you joined us before and do you have a question or comment? |
| JBS | Type HERERon here for Joanne, Nancy...she is on her way |
| Nor | Type HEREthis is my first time |
| drrees | Nor, do you have a question about lichen planus you would like for us to discuss? |
| drburkhart | Hello Nor, have you been diagnosed with LP? |
| Nor | well I was just diagnosed with it and i am not sure what it is exactly |
| Nor | i have an appt. with Dr. seiger in Baltimore on dec. 13 |
| don | Could we talk about olp & SSC? |
| don | Mak,e that SCC! |
| Nor | what is SCC |
| don | Sorry Squamouis Cell Cancer! |
| Nor | ok |
| drburkhart | Don, what specific question do you want answered? |
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| drrees | Don, That is an interesting subject. We certainly know that most patients with LP do not develop squamous cell carcinoma. However, there are some reports that there may be some type of association. All the more reason to be diagnosed and treated |
| don | Are you of the opinion that SCC descends from OLP? |
| aupton | Welcome, Dr. Ship. |
| drburkhart | Nor, do you mean Dr. Siegel? |
| Nor | yes |
| drburkhart | Nor, you are in excellent hands. |
| Nor | i hope so |
| Nor | i have been suffering since July |
| Sirois | As you may know the relationship between LP and SSC (cancer) has been investigated for many years with equivocal conclusions. Though the generally reported overall prevalence is between 0.5-4%, others have reported that this is innacurate due to mis-diagnosis of LP (that is, the lesions were actually due to another disorder, like lichenoid dysplasia). Current work that adjusts for other variables would suggest there is no increased risk for cancer in LP. |
| don | I have had two instances of SCC. 2nd got into lymph nodes. Surgically removed and massive radiation. OLP remains! |
| Sirois | I agree that you are in excellent hands with Michael Seigel. |
| drburkhart | Nor, what are you currently doing to control the lp? |
| Nor | nothing |
| Sirois | Nor, are your lesions painful? |
| Nor | i haven't been told to do anything |
| Nor | yes |
| drrees | Don, did you have other risk factors, smoking, alcohol, compromised immune system? |
| Nor | especially under the tongue |
| DrShip | The recommendation we have regarding lichen planus and potential cancer relationship is this: once you are adequately diagnosed and being followed up, any significant change in your clinical presentation needs to be thoroughly evaluated by your clinician. If in the very, very unusual event there is a highly suspicious lesion, then it can be biopsied and a diagnosis established |
| Nor | no |
| Sirois | Nor, do the painful lesions interfere with your diet / ability to eat? Do you have lesions outside your mouth?> |
| Nor | none outside |
| Nor | mainly in my throat and roof of my mouth |
| Nor | and side of my cheeks |
| drrees | JBS- Do you have a question? |
| Nor | alot under the tongue |
| DrShip | Nor: your doctor can prescribe a moderate dose steroid-type of mouth rinse that may help those difficult to reach lesions. |
| don | Soked till 1988. Drink moderately! Washed mouth with cepacol containing alcohol twice daily. Don't think I had immune system problems until now as a result of radiation! |
| JBS | not right now |
| drrees | Don, tell us a little bit about the location of LP lesions in your mouth. |
| don | Mostly on right side - buccal mucosa! |
| drrees | Don, Is that where you had the SCC? |
| Sirois | Dr. Ship's comment about investigating changes in your lesion appearance is excellent. With the advent of new diagnostic technology (the brush biopsy) the entire lesion can be sampled to explore tohe possibility of pre-cancer changes. This allows minimally-invasive monitoring without repeated biopsy unless well-justified. |
| don | First SCC on gum line right side second occured with olp leision. |
| Nor | does LP ever go away? |
| drburkhart | Don, did you have any extreme life events or heavy stress before the lp/SCC? |
| don | No I'm happily retired> |
| Sirois | Don, do you have multiple LP lesions, or just one area (separate from whee your original SCC was located)S |
| don | Have small ones but more on right side! |
| drrees | Nor, we know that we can make the lesions go away about half the time while you are under treatment. However they have a strong tendency to recur unless a specific cause can be identified and eliminated. |
| DrShip | Nor: the epidemiological data on lichen planus is difficult to follow, however the range in years of lesions in patients lasts between 2 to 15 years. Therefore, you may be somewhere in that range. Our experience has been that after several years, the lesions tend to remain stable and don't generally get much worse. However, of course, there are individual variations. |
| Nor | it just appeared out of nowhere |
| Nor | and has been bad ever since |
| Sirois | Are those of you with LP taking any medications that might be associated with the LP onset? |
| Nor | it never goes away |
| don | Speaking of causes, I suspect long use of Sodium Lauryl Sulfate in toothpaste contributed. Comments? |
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| drburkhart | Nor, I think that this appears to be one of the most frustrating aspects for patients with lichen planus. It is very unpredictable for most individuals. Some patients have one episode and may not have another for years. Others, have constant problem. |
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| Nor | what kind of meds are associated with LP |
| drrees | Nor, the sites you have lesions are relatively uncommon except for the cheek. I take it you only have a clinical diagnosis at this time. Is that correct? |
| Nor | i don't know what I have |
| Nor | i had been seeing a ENT |
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| Nor | i have been sen to Dr. Seigel now |
| Nor | the ENT never heard of it |
| drburkhart | Hello Lec, welcome. Do you have a question or comment? |
| Nor | but he did the biopsy |
| lec | i have oral lp my tongue is sore today |
| DrShip | Nor: meds generally associated with LP: sulfasalazine, NSAID, angiotensin converting enzyme inhibitors, zidovudine, ketokonazole, beta blockers, to name a few. Some diuretics will also do it. |
| drrees | Don, There is evidence that an allergic reaction can sometimes appear as OLP. However, sodium lauryl sulfate is a relatively uncommon cause of allergy although it may cause irritation. |
| lec | you just answered the ? i was going to ask |
| drburkhart | Lec, how long have you had lp and what treatments are you following? |
| Nor | I have been on atenolol for over a year, could that be the problem |
| lec | for 2 years, lidex, try to reduce stress thru counseling |
| don | Doctor in Norway says avoid it. Sensed my mouth improved when I stopped using it! |
| drrees | Don, improved or did the lesions go away? |
| don | Reduced in number! |
| Sirois | Nor - yes, atenolol could be contributing. Simply changing meds may help, but lesions can also linger for a long time after meds are stopped / switched. |
| lec | have any of the docs seen blisters in the raw areas in oral lp? |
| drrees | Don, then that does not sound as though it is the only factor in your LP. Do you take medications? |
| drburkhart | Lec, How has stress management helped you? I believe that more individuals should try reducing their stress levels. What types of activities do you participate in currently? |
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| don | I was & am a long time user of Dimatap now gone! |
| lec | i am a cpa so my job is high stress. counseling helped alot |
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| Nor | so you believe that stress plays a big role in LP? |
| DrShip | Lec: there is a form of lichen planus, fairly unusual, called Bullous Lichen Planus. In this situation, you could have blisters within the region of lichen planus lesions. |
| lec | i go to private counseling every other week. i think stress plays a huge part |
| don | Incidentally, I feel olp causes stress not the other way arround. |
| drrees | Don, we know of no correlation with dimetapp. However, since you don't use it now that pretty much rules it out as a causative factor. |
| lec | my blisters are raised and white. they pop after a day or so |
| DrShip | Lec: have your lesions been biopsied and a diagnosis established based upon the pathology? |
| lec | i got a biopsy after i started having the blisters because i wasnt sure i really had lp |
| lec | it was positive |
| drburkhart | lec, good for you! We tell patients to get involved in stress management and many do not listen. I am happy that this has worked for you. The problem appears to be that many of us do not know when we are truly stressed and the toll that it has on the body. |
| lec | i know when my stress is the highest because the lp gets worse! |
| DrShip | Lec: you could have a bullous form of the disease - fairly unusual, but will also respond to some form of steroid therapy, either topical, injectable, or if necessary, taking steroid pills. |
| drrees | Don, you may have something there. Any chronic lesions are stressful and the history you gave us suggests that you have other stresses in your life as well ( I'm talking about the SCC) |
| lec | is the lidex a waste of time? |
| don | Does olp interfere with the normal aptosis of the cells? |
| drrees | Don, who are you? |
| DrShip | Lec: Lidex is a mid-strength potency steroid. Your doctor could consider a stronger topical gel, such as clobetasol (temovate) 0.05% |
| Sirois | Lec - given the association of blisters with your lesions it is important that the precise diagnosis be firmly established. Other autoimmune disorders can look identical to erosive lichen planus. Special tests, such as immunofluorescence, are helpful in distinguishing - you should find out if any such test was performed. |
| don | Retired regular officer in USAF. Daughter a Physician at Duke! |
| lec | ok thanks for the suggestion |
| drrees | Don, ok. LP is associated with a degeneration of the very bottom cells of the epithelium. |
| lec | there was only a biopsy. where is the closest treatment center to northeast pa? |
| don | Done much research on my own! |
| DrShip | Lec: you have two choices probably. Go to Philadelphia at the Univ of Pennsylvania or go to New York City to New York University to see the oral medicine experts. |
| drrees | Don, the degeneration of those cells probably explains why some OLP lesions get eroded or ulcerated and others don't |
| don | Then why wouldn't it interfere with natures timetable for aptosis. |
| lec | i just use an oral surgeon now. u of p is closer. i've been there for pregnance i have 2 kids w/spina bifida |
| drrees | Don, what do you mean by natures timetable? |
| Sirois | lec - may not be necessary for you to travel so much as your biopsy specimen. If the possibility is real that you might have a different disorder, a repeat biopsy would be necessary and fresh tissue sent to a pathology lab capable of direct immunofluorescence |
| don | What is timetable for Buccal Mucosa? |
| don | Understand cells, skin, live ~ 21 days? |
| lec | one occulta, one myelomeningocele, so you can see i have stress problems |
| Sirois | probably closer to 14 days for oral epithelium, but close enough |
| lec | i will definately have another biopsy |
| Sirois | lec - just be sure the doc knows direct immuno is planned - it requires a sample of intact epithelium AND special solution for storing the specimen |
| don | Hypothesis: SLS interferes with basal cell, so they don't die reqadily and surface manisfestation is OLP> |
| lec | i will print the transcript so i get it right. thanks |
| drburkhart | Don, were you using any other oral care products such as full-strength mouth rinses? Did you use any "out of the ordinary" toothpaste or other products? |
| lec | is it better to biopsy a "flareup" in progress? |
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| don | Most toothpaste has SLS as does most soap, shampoo! |
| drrees | Don, ok I think I understand. In health the epithelial cells go through an orderly process in which they pass from the deepest cells to the surface and are lost. In some OLP lesions, the white ones you actually can get a thickening of the epithelium at the top so the timetable is altered. More significantly, in LP the bottom cells don't always go through the natural process. They die and may even be ejected into the tissue below the epithelium on occasion. |
| DrShip | Lec: it is advisable to biopsy the periphery of the lesion during a flare-up. |
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| don | Sounds good. |
| don | However, SLS is used to break down cells for DNA analysis! |
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| don | Also Sls is a lipid very similar to the cell wall lipids [ forked & double |
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| drrees | Don, I think you believe that SLS is a factor in the events you are experiencing. Remember that SLS is only present in a relatively small quantity in the products you mentioned and in the mouth it is apparently washed out or altered by saliva. At any rate, since you no longer use that I still don't think it explains your OLP. |
| don | For instance there is some use of SLS in capsules [Gel} for drugs. |
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| drrees | Don, Incidentally, what toothpaste do you use now? Do you still use a mouthrinse of some type? |
| don | You assume once you eliminate the cause the disease is over! |
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| don | Use some special stuff no SLS. Wash mouth out with water. Lost all but front bottom teeth in prep for Radiation! |
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| drrees | Don, That is certainly the way it appears when we can find the cause. That is with a drug induced reaction or allergy to something else in the mouth. |
| Sirois | For some the lesions may persist long after medication is discontinued. |
| drburkhart | Dr. Ship, could you comment on any research that is being undertaken at NYU with regard to lichen planus? Or potential projects that are promising? The participants are always interested in hearing of anything that is underway. |
| don | I've seen some suggestions that cancer is sort of a disruption of normal aptosis! |
| Nor | what is aptosis |
| lec | i would be interested in studies that show if there are correlations to other autoimmune diseases, like hashimoto thyroid for example, which i have |
| don | It's the process of a cell forming then dying. I assume different cell do it at different rates> |
| drrees | Don, remember we are talking about your OLP not your SCC. Cancer is growth running wild and it certainly alters the normal functions of the cells in the area. The question is which comes first and we don't know. There is research underway in an effort to understand that better. |
| drburkhart | Don, my question was what products you may have used on a long term basis. If you have not completed our survey on line, please do. Information that we get from the surveys will be of help to others and to the research in lp. |
| DrShip | Dr Burkhart: currently we have no active studies on lichen planus. However, with the addition of Dr. Sirois to our faculty, in combination with Dr. Joan Phelan (oral pathologist) and three additional faculty persons interested in oral lesions (Drs. Ross Kerr, Gwen Cohen Brown, Tony Vernillo), we hope to start developing clinical research protocols for lichen planus. Importantly, in about one year, we will open a new clinical research center at our College of Dentist |
| Sirois | apoptosis is the programmed death of cells - some cells do not dividie and are not replaced, while others die and are replaced. The programmed death of a cell is regulated by the genetic constitution of the cell, which can be altered by malignancy to create immortal cells. |
| don | I mean to do the survey after! |
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| lec | is dr ship at nyu? |
| drburkhart | Thanks Don. |
| DrShip | Lec: I am at NYU College of Dentistry |
| aupton | Welcome, Rick. If you have a question, fire away. The doctors will answer as soon as they can. |
| Sirois | Yes, Dr Ship is the Director of the NYU College of Dentistry Clinical research Center |
| lec | maybe u of p is my 2nd choice |
| drburkhart | Dr. Ship, this sounds exciting. You have a really super team working at your facility. |
| don | Suggestion: Give some Grad student a study on the effect of SLS on say tadpoles! |
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| drrees | Jonathan, we have a similar group here and a fairly large data base of lichen patients. Perhaps some collaboration would be possible once you are set up. |
| Sirois | lec - there are several oral medicine docs in teh pittsburgh area. I am not sure I can provide names in this forum, but would be glad to provide them privately. |
| aupton | Welcome, al. If you have a question about Lichen Planus, just ask. the Doctors will answer as they can. |
| lec | pitts is 6 hours. nyc is 3, phila is 2, so pitts is out |
| Sirois | drrees - multi-center studies are essential in LP - I would enthusiatically encouraghe a collaboration, and Jon is a highly qualified individual to help facilitate a collaboration |
| DrShip | Terry (Dr Rees): I look forward to a multicentre collaboration for this disease. I would be especially interested in trying to get industry to support the development of a strong topical steroid (e.g., clobetasol) in combination with an excellent adhesive agent (e.g, sialoacrylate). |
| drrees | Lec- If I were you I would try NYU. Yor are talking with two experts from there right now! |
| lec | my daughter uses a clinic setting for her spina bifida. are there plans to do dentistry clinics that cover lp? |
| lec | i agree - nyu it is |
| Sirois | NYU has a hospital based oral medicine faculty practice as well as a school-based oral medicine clinic |
| drburkhart | Lec, I agree with Dr. Rees |
| drrees | David and Jonathan. Let's pursue this as soon as we can. |
| drburkhart | Lec, as Dr. Rees mentioned, a large portion of the patients seen here at the stomatology center are lichen planus. |
| Sirois | drreed - my email is ds62@nyu.edu and Jon's is js21@nyu.edu - let's communicate at your convenience. |
| lec | you all have me anxious to get started (again). the only thing is that i am intrigued with the fact that my 1st diagnosis may be wrong, although i don't know what elso it could be. i have lacy white lines, raw red flareups, etc |
| drburkhart | Rick, do you have a comment or question? |
| drrees | David. Great! |
| lec | and weird white bulbous blisters!! |
| aupton | Folks, we have about 10 minutes left online, so you may want to prepare any final thoughts or questions now. |
| DrShip | Dr. Rees: my email is jonathan.ship@nyu.edu I look forward to developing a collaborative investigation. We'll stay in touch. |
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| drburkhart | Hello Penny. Welcome! Do you have a question or comment? |
| drrees | While we have a bit of a lag in the discussion let me encourage those of you who know or suspect you have OLP can find some useful suggestions on this homepage regarding what to do. |
| penny | Type HEREyes, I would like to know if there is a preferred med. for mouth prob. |
| Sirois | lec - keep in mind that while the lacy white lines are certainly characteristic of LP, they may also represent the scarring that occurs with healing. If indeed you devellop blisters / bullae, it is certainly reasonable to confirm your diagnosis |
| DrShip | Lec: a re-examination of your previous biopsy specimen would help, as well as a thorough clinical exam. If necessary, a second biopsy with the appropriate tests, as Dr. Sirois explained, would firmy establish a diagnosis. |
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| don | Thanks! ftfd110@attglobal.net |
| lec | so when i come to nyu i should bring the old lab reports w/me? |
| drrees | Penny, the answer is yes if you are talking about lichen planus or other mouth problems. However, there is not one med you should use simply because your month is sore. |
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| DrShip | Penny: our strategy has been to start with mild strength topical steroids, like lidex, for example, and then progress to stronger topical steroids, injections, and if necessary, steroid pills. This all depends on the severity of your lesions, your other medical conditions, and the pain and suffering you are experiencing. |
| Sirois | I would like to congratualte Dr. Burkhart and her colleagues for establishing this useful forum for the benfit of the patient - excellent! |
| drburkhart | Fleming, Welcome! Do you have a question or comment? |
| penny | I am talking abt lichen planus. I would also like to know if you can spread it to the genitals |
| penny | by hands |
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| Sirois | the lab reports are useful because they contain a microscopic description. that is certaily a starting point |
| lec | this forum has helped me more that any other - thanks to yoou all! |
| DrShip | Penny: this is not a communicable disease - you can't personnally spread it to other regions. |
| penny | Thank you. What med do you recommend? |
| aupton | Five minutes to go, folks. It's time to begin signing off for this session. Thanks to all our visitors and expert guests. |
| drrees | Penny, as far as we know that doesn't happen but it hasn't really been studied. We know there is an oral-genital syndrome but we don't know why. We do know that lesions can spread on the skin when you scratch them and skin lesions often do itch. |
| DrShip | Dr. Burkhart and Dr. Rees are to be commended for establishing and maintaining this wonderful resource for patients experiencing lichen planus. I congratulate both of you for the service you have provided. Jonathan. |
| fleming23 | I have a question or two about school. I am currently enrolled in high school. I am a junior. I would like to attend Baylor College to become a dentist or specialize maybe in orthodontics. What do you recommend for me right now. Should I get my core classes out of the way at another school and then apply to Baylor. Any suggestions? |
| Sirois | good night - and I hope we can continue the discussion off-line. Dave Sirois |
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| fleming23 | Do any of you have any regrets about dental school or the decision to make that career choice? |
| aupton | fleming admissions@tambcd.edu will answer all your questions. The BCD home site is http://www.tambcd.edu |
| drburkhart | fleming, please contact me through the site address and I will help you. |
| DrShip | Penny: your clinician can start with lidex gel, go to clobetasol gel (if necessary). You could also consider a dexamethasone mouth rinse. |
| fleming23 | thanks! |
| lec | i use gel it "sticks" better |
| penny | Thank you. |
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| drrees | Fleming. That is a different subject from our discussion but remember that you have to go to college for 4 years to get your core courses and it does not have to be at Baylor. |
| DrShip | Thanks for inviting me to join in this exciting and informative venue. Good night. |
| drburkhart | Thank you all for joing. A special thanks to Dr. Ship and Dr. Sirois for joining us. |
| lec | thanks for attending doctor |
| Nor | thank you |
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| aupton | See you all next time. When you're ready, click the Log off button. The room will be shut off in about 5 minutes |
| drrees | Goodnight folks. This has been great. We appreciate the contributions of our experts and the other participants as well. |
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