| .............. Log on Aug2003 started at Tue Aug 05 07:00:27 PDT 2003 ........... | |
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| aupton | Good day to you all. Dr. Burkhart will be moderating today. Enjoy. -- |
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| TnDi | First time in chat room so will watch to catch on |
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| DD | Type hereHello, can the guest doctors please be identified by the user names they have chosen? I found that in the last chat I participated in, it wasn't always clear to whom the questions shoul dbe addressed. |
| aupton | dd -- Dr. B will start the session in a moment, and thanks for that comment |
| drburkhart | Hello everyone. We expect to have a busy session today. We welcome Dr. Ross Kerr and Dr. Russell Greenfield today. |
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| kerr | thanks for inviting me |
| drburkhart | Dr. Greenfield is logging on and will be here soon. |
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| bonie | The last seeion was my first one and I found it very helpful |
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| drburkhart | How is everyone today and what questions do you have for us? If some of the questions are too detailed, we may contact you after the session to continue. |
| DD | When can we start asking questions? |
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| gold | gold |
| TnDi | what effect does using Nystatin or Fluocinonide 3 x a day have on liver, etc. |
| cbt | Any new BOLD discoveries? |
| drburkhart | I will tell everyone that I have not been as responsive during the past few weeks. I had a death in my family, was on vacation and my computer has been down. I hope to get this going soon and I will get back to you. |
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| Loraine | Any new discoveries? |
| bonie | There is a new product called oralbalance by biotene, it is really great for dry mouth. |
| DD | Dr. Kerr, I understand that you received part of your medical training in the city where I live, Toronto. If you happen to know of someone with a paricular interest in LP in Toronto, I'd be grateful if you could share this information (Dr. Burkhart may have sent you this requrest already). |
| drburkhart | TnDi, using Fluocinonide has shown no blood uptake. A study by Dr. Rees and Plemons a few years ago showed this. |
| kerr | TnDi: these medications have very little effect on the liver. |
| dusty | i have never been inside a chat room on my computer . |
| Clara | I use the biotene mouthwash and toothpaste and have found it helpful |
| Loraine | Any other bad side effects? I understood taking it too long made the gums thin? |
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| DD | Dr. Burkhart, I'd lik eto offer my sincere condolences on your loss. Please remember to follow your own excellent advice on coping with stress! |
| Loraine | I was referring to Flucinonide. |
| gold | After using Fluocinonide for 1 month, my lichen planus was much better. Then came back with a vengence. Why? |
| kerr | DD I will provide you a name via Dr, B at the end of the session. |
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| Clara | speaking of stress...how much does it play a part in OLP? |
| DD | Dr Kerr, Thank you! |
| presdon | preswdon |
| drburkhart | Clara, Biotene products are great! That is what is recommended at the stomatology center. I have had many emails recently from patients who began using the toothpaste and were amazed at the difference |
| kerr | gold: did you stop the medication suddenly or taper off it slowly ? |
| bonie | Is stress just one of the reasons for lp or is it several things |
| gold | I tapered it off slowly. |
| drburkhart | Clara, the additives that aare found in normal toothpaste often cause problems for the patient. And, I believe that stress causes a great problem. As you know, there have been multiple studies reported recently on the effects of stress and disease states. |
| barb1602 | Does anyone have LP on their body other than in their mouth? I have it in lots of places. |
| borka | i understand that auto-immune conditions can go into remission- in the case of LP, would any existing lesions disappear? |
| DD | My OLP is still relatively mild by the lesiuons on my skin have been awful. Fluocininonide cream works wonders -- particularly if I can catch the LP when it is just starting... the skein gets intensely itchy and slightly rough. If I use the Lyderm/Lidex aggressively (the full 4x daily my dermatologist allows) I can actually prevent it from developing. I need to catch it quickly, however. I do not consider thsi preventive, but it is lot better than having lesions that |
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| Loraine | I have it in other places too. |
| bonie | I have it in several different places |
| kerr | bonie: very little is known about how stress may cause or influence the course of this disease, there are many possible causes for this disease, and probably a combination of genetic factors in conjunction with environment factors |
| presdon | I have sores and lesions in my entire mouth. These are very painful. Any suggestions for some relif and comfort from this pain |
| TnDi | I had body sores for over two years and even though sought several doctors they never could give me a diagnosis. It finally mostly stopped |
| Clara | I'm taking dexamethasone...how long is it safe to take it? |
| Loraine | can you buy Biotene without a perscription? Is it safe? |
| drburkhart | Everyone, Dr. Greenfield has not been able to log on from his location. He is going to another computer and will long on soon Just hold any questions for him until he gets on. |
| bonie | After the last session I went on prednisone and it cleared up my lip and my skin but isn't much help to olp |
| Barry | If participants are interested in post forum communications please post your email address or contact me barryj1@sbcglobal.net. |
| Clara | loraine...you can buy biotene at walmart |
| debs | Can I Continue to take Syrtec everyday without harm to releive itching? |
| bonie | You can also buy a big variety at Walgreens |
| kerr | gold: the topical steroids are not curative and merely treat the inflammation. we hope to get this disease into remission but are not always successful. what are you taking now ? |
| drburkhart | Loraine, we have a direct link to Biotene under our "Links" section on the site. |
| DD | The oralpathologist I saw re: my OLP stated that as it was relatively mild she did not want to prescribe a steroid (topical or oral) for it, but suggested that Biotene toothpaste could be helpful. It is excellent! If I do something silly (like use a hot dipping sauce, as I did last night) and my mouth starts to feel painful, I fill a shot glass with food-grade aloe vera gel and use it as a mouth rinse that I swallow. I find this very soothing. |
| gold | I am not taking anything now. Have a followup appt. with peridontist this PM. |
| drburkhart | DD, could you ask Dr. Greenfield that question when he is able to log on. |
| gold | Also, my mouth sores are only on 1 area of my mouth, always near a particular gold crown. Have other crowns with no lichen planus. |
| kerr | gold: best of luck |
| bonie | I am terrified of going to the dentist my mouth is way too sore, any suggestions |
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| TnDi | I have OLP on both sides of tongue and one cheek. Sometimes it seems to be in my throat. Is there a mouth wash to use? |
| Lulu | my peridontist thinks there is a link to Epstein Barr virus for lp. Any news about that? |
| TnDi | erosive OLP. Will those areas ever recoat and look normal |
| Clara | (kerr) what have you found out about blood pressure medicine maybe a causing OLP? |
| Kitty | Type here Yes, please address the throat involvement. irrritation to acids, etc |
| TnDi | is it right to believe it is not contagious |
| drburkhart | Bonnie, when you have OLP it is important to be monitored and also professional cleanings are crucial. Studies show that keeping the tissue clean and free of plaque is needed. So, I suggest that go and find someone who knows about OLP. |
| DD | Drs (this is for all of you): someone I recently connnected with through a an LP support group has been talking about yeast and viruses as if these were a well-known part of the LP picture. I was aware that thrush coul dbe a side effect of steroids appliued to th emouth, but this woman im plies that her doctors have been discussing yeast (she mentioned that ashe has contacted Dr Burkhart, and isn't able to participate in these chats as her computer is incompatible). I |
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| kerr | kerr: if this reaction is next to a crown this may be a lichenoid reaction to a material in the crown. Generally we don't see reactions to gold but we have seen reactions to dental amalgam and I personally have seen a reaction in an area where a cold crown is in contact with an amalgam filling in the opposing tooth. |
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| drruss | Good morning to all - I apologize for being late. |
| drburkhart | Hello Dr. Greenfield, so happy you could join us today. |
| drruss | Thank you - it's an honor. |
| bonie | Anyone special that you know of in the Ann Arbor Mi area, no one seems to know much about this olp and look puzzled when you tell them what you have |
| drburkhart | Everyone, Dr. Greenfield is here if you have questions for him. |
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| Clara | Epstein Barr issue very interesting...I had that several years ago... |
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| drburkhart | I will start. I know that a large % of disease can be traced to lifestyle and stress. Could you comment, Dr. Greenfield. |
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| vic | bonie...Dr. Gobetty at the UofM School of Dentistry....he is great...my olp is in remission |
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| bonie | I also had Epstein Barr about 40 years ago |
| kerr | DD: to our knowledge, neither yeasts nor viruses play a role in LP, other than a fungal infection overlying an existing LP lesion due to steroid appication |
| DD | I did not have any LP at all until after (six months after ) I had my two (small) amalgam fillings replaced by a tooth-coloured compound. I had assumed thiis was probably coincidental. Also, my LP is very pronounced on my skin and very subtle in my mouth. |
| TnDi | It took me two doctors and three dentist before I got a diagnosis of OLp. Why so poorly known? |
| drruss | More and more data now strongly point to the role of stress in contributing to illness - not causing it per se, but lessening the effectiveness of certain body functions, notably the immune system's proper functioning. Now it's understood that taking good care of oursleves and managing stress is no longer an option, it's a mandate. |
| susan | Type hereI agree |
| TnDi | Oral Surgeon knew right away and he was the third doctor |
| presdon | presdon:: any suggestions to get relif from the painful lesions and sores in my muth caused bt OLP? |
| barb1602 | My OLP is mild with bumps here and there, but no lesions in my mouth. I have many spots of it on my legs, with a huge area that went into cellulitis on my left shin. I also have tiny itchy bumps ocovering my arms and on my back. Do you know of medicines that can control the itching? I have a doctor and he is a great help, but sometimes I almost panic at how slow LP is to go away. |
| drburkhart | TriDi, When you think of it, only a small % of the population has OLP or LP. So, this is not something that a general practice may see very much. Also, OLP may appear similar to other skin diseases. |
| debs | Understands that a yeast-like reaction occurs with vaginal olp is this true? |
| kerr | presdon: there are a number of topical therapies which can help with these painful lesions, primarily topical steroids |
| drruss | From a complementary medicine standpoint, slippery elm lozenges or a gruel made from slippery elm can be soothing. Also, tablets of DGL (deglycyrrhizinated licorice) can be chewed into a paste and then applied (with the tongue) to the sore areas. |
| borka | I also had trouble getting a diagnosis. Had a biopsy in January on side of my tongue. Results were inconclusive. Then 2 lesions came up on my tongue. Another biopsy confirmed lichen planus. Yet my dentist and oral surgeon both said it didn';t have the familiar look of lichen planus. |
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| drburkhart | Debs, we get reports from women who report vaginal yeast infections that they may have coped with for some time before the vaginal LP has been diagnosed. |
| drruss | As regards itching, some people note an improvement with the use of topical preparations of calendula or aloe. |
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| drburkhart | Dr. Greenfield, someone just asked about the value of aloe. I was listening to The Gary Null PBS special last night and I noticed that he also comments about the benefits. |
| Anle | Anle-On itching, one may want to try witch-hazel. |
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| TnDi | Zrytec was a great help with itching when I have body sores |
| debs | any thoughts on the all natural auto-imune enhancers? |
| DD | My LP flraed up to th epoint of being dignosable (recognizable lesions, etc) this March, and in mid-April I also developed shingles (one patch, no sign of another). Th e"thingling" that signals shingle sin not unlik ethe start of LP, so I thought it was a new wrinkle in the LP, and over Easter teh shingles became infected with a bacteria (my husband insisted I see a doctor, and told me that the patch weas now green). I believe that stress may be a factor in healing: s |
| kerr | boika: lp can take on many different forms. in the dental school curriculum student seem to rember the lacy white appearance, but this is not always what we see. my suggestion is to go to see a specialist who has seen many patients with lp |
| drburkhart | Dr. Greenfield, could you comment on the value of green vegetable and a proper diet? |
| drruss | Aloe has been used to soothe skin for centuries. The best way to use also provides the benefit of beauty in the home - purchase an aloe plant. If your skin needs soothing, cut across one of the leaves and express the aloe directly from the leaf, then apply to the skin. |
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| TnDi | Dermatologist gave me a shot of Kutapressin. Any comment on that |
| TnDi | can you use Aloe in the mouth? |
| borka | Dr. Kerr, do you know of any specialists or dentists who are knowledgeable regarding LP in the Toronto Area? |
| drburkhart | Everyone, there is an article on the value of aloe on the general dentistry web site under lichen planus |
| drruss | We've already mentioned the fact that stress can worsen certain medical conditions, especially chronic inflammatory ones like LP. Believe it or not, another means of managing stress within the body is through proper nutrition. Eating more fruits and vegetables, with their anti-inflammatory compounds, and less of the pro-inflammatory agents found within red meats and foods containing trans fats, can go a long way toward lessening inflammation. Eatng plenty of cold water |
| kerr | bioka: yes, and I will give dr. burkhart the name at the end of the session |
| drburkhart | Everyone, contact us if you need someone knowledgeable in OLP. We can get some names for you. |
| Barry | Test |
| DD | Hi Borka, |
| borka | Hi DD |
| kerr | not familiar with kutapressin |
| drruss | Yes, aloe can be applied directly to the mucosa of the mouth. |
| DD | Borka, you are in TOrontoo? So am I. Post your emailif you are willing to chat. |
| gold | Fresh fruits seem to cause my lp to flair up. Have you found this to be true? |
| drburkhart | The webmaster will leave the room open at the end for exchange of addresses, if you wish. |
| Clara | cold water seems to be very soothing in my case |
| bonie | Does the person who gave me Dr. Gobetty name want to give me their phone no. |
| Loraine | would you suggest applying aleo straight from the plant or do you need to buy some sort of medicine? |
| borka | I will post my e-mail address at the end |
| DD | I find that capsaicin cream is very helpful in lessening my skin itch. I use it in addition to Lyderm/Lidex, in a protocol I worked out with my dermatologist. |
| drruss | Some people with LP are sensitive to citrus - this is not uncommon. Most of us are sensitive (not necessarily allergic) to specific foods, and this can manifest in many ways. |
| TnDi | kutapressin is suppose to help the immune system so I am told. little info on the web |
| Lulu | My peridontist prescribed Lidex for OLP, but pharmacist said not to use in mouth! Why not? |
| drburkhart | Dr. Greenfield, could you comment on the value of yoga, prayer, meditation and tai chi? |
| susan | I was diagnosed with olp on my bottom lip last year. My dermotologist said that olp usually runs a course of 18 months . Is this correct? |
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| DD | I mentioned at the top of this chat that I use food-grade aloe vera gel (cold from the fridge) as a mouth rinse which I swallow. A plant may be better, but the gel is inexpensive in health food stores, and will pour into a shotglass/eggcup after being shaken. |
| gold | I've had olp for 15 years. |
| drburkhart | Susan, there is no way to predict. Some people have this one time while others may have problems for years. |
| bonie | I've had it for 7 years, sorry I wish it were only 18 months |
| kerr | lulu: this is quite common because these topical medications are not labelled for use in the mouth. just have your doctor phoe the pharmacist to explain |
| Anle | Gold that is true with me. Rinsing the mouth after meals, with water is good. |
| drruss | You need not purchase a specific aloe preparation, although doing so is fine. Personally, I like having the plant around. I'm a fan of capsaicin. I think the concern about using lidex in the mouth might be the potential for increased absorption of the active ingredient and , thus, increased potential for toxicity. |
| Clara | Dr. Greenfield, how long should I stay on dexamethasone? |
| gold | Is Fluocinonide safe to use in the mouth? |
| DD | I had heard F came as a mouthwash, but my oral pathaolgist wants to help keep me from getting to the point wher eI need it. |
| kerr | gold: topical steroids are safe for oral use, as long as you follow directions from your doctor |
| bonie | what isd capsaicin? |
| pro.parachatgroup.com | [2009] touser Hi, all. Note: If you miss some answers, the transcript will be posted on the Web site later today. |
| DD | teh active ingredient in hot chili peppers. It comes as a cream in two stengths... everyone I know with LP says ONLY use the mild one. Th ebrand I found in Canada is Zostrix. I coul dnot source it through health food stores or my regular pharmacy, but got it at a department store pharamcy. |
| cbt | Dr. Kerr........any serious developments from your perspective |
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| Anle | I've noticed sugar definately effects OLP. |
| bonie | borka are you the one that gave me Dr. gobety's name, sometimes this gets confusing |
| drruss | I wish I could offer you a clearer answer with respect to how long to stay on steroids, but it really is dependent on the individual, which is why the decision needs to be made with your doctor. Obviously we want to lessen your need for medication, but we want to limit the inflammatory process, too, and steroids can clearly be of benefit. Yoga, tai ch, and other activities are wonderful stress busters, as well as offering well-established lhysical benefits, too. I had |
| drburkhart | #Everyone, we have specific instructions on the site for application of oral medications. The instructions should be followed as we suggest. It is important to keep the oral lesions in a non-erosive state. Inflammation anywhere in the body is not a good thing (as Martha would say). |
| TnDi | I am very happy to be in this chat room as learning much to help me control my EOLP |
| DD | Dr. Greenfield, I've found that the Lamaze breathing techniques I learned in prenatal classes have bene very effective in helping me cope with stress. Even if I don't think I'm stresse, if I get pre-LP itching I do breathibng exercises even before I apply Lyderm. |
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| barb1602 | bonie, I can't imagine 7 years. I had a bout 3 yrs. ago that lasted about 6 months. Now have a much worse bout which started in Jan. of this year. The stress is great in spite of myself due to the LP. My life is stress-free otherwise. |
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| Clara | bonie, after the session would love to discuss OLP in relation to our Epstein Barr |
| drruss | Breathing exercises are wonderful stress reducers, and they really can help lessen some of the physical symtpoms of LP - great! |
| kerr | cbt: research has made much progress towards an understanding of the pathologic mechanisms of lichen planus, in other words, the way the inflammation leads to the development of the lesions seen in the mouth. however, we are still trying to work out the causes and why some people are more likely to get lp. |
| drburkhart | Dr. Greenfield, what do you think about blood type and diet? I have received some emails from patients regarding this and referencing a book that was published a few years ago. Do you find a certain blood type to have more "skin diseases" in general? |
| drruss | By the way, breath work is an integral part of the practice of yoga. |
| bonie | Clara please leave your e-mail for me, I can't talk today but would love to talk in the future |
| DD | I agree that LP/OLP itself can be a major stress factor. I worry about anyone who perceives their life to be stress free, though. A stress-management practitioner I have been corresponding with re: LP gave me a wonderful analogy: stress can be caused by repressed emotions, even repressed joy. I lik ethat, because it allowes me to not see any stres I may have as a purely negative thing. |
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| Loraine | I am confused as to how often to apply steroids in the mouth and on other areas. I have pretty constant inflamation. Which is worse chronic inflamation or chornic steroid use? |
| drruss | I am not a fan of eating according to blood type, as the data really just aren't there. It's an interesting hypothesis, but with very little to support it. A generally healthy diet that promotes high intakes of fruts, vegetables, and cold water fish shold be good for most everyone. |
| DD | Re; breath/yoga. Where does one find a yoga teacher who is not flakey/irritating/passive aggressive? I went looking for a yoga instructor and gave up. Caued too much stress. |
| kerr | Lorraine, |
| drburkhart | Everyone, we have a great article on our "Lifestyle" section on breathing techniques by Joe Thomas. It is well-worth trying. Also there is a wonderful tape under our "suggested readings" by Dr. Weil. |
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| drruss | Stress can be defined as change; thus, there are positive and negative stressrs. The key is we must all identify the tools that work for us, even explore new ones, to help us manage stress so we can remain in balance. |
| Clara | bonie, I will do that and would you do the same....thanks |
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| debs | can't eatr fruits and veggies with oxalate due to kidney stones and was recently warned not to eat too much fish for mercury issues |
| bonie | I ;hope you that you are reading all of this Jani and Don |
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| drburkhart | Dr. Greenfield, what do you thin about omega 3 supplements? |
| DD | Cold water fish: Salmon is fatty but rich in godo acids. Is this a good choice? How about mussels? |
| drruss | Hah! I like that about the yoga instructor. Best way to find a GOOD yoga instructor is to ask your friends, then go watch a class. Then, if you like the instructor, have a one-on-one session so he/she can get a sense of your needs and limitations. |
| kerr | lorraine: having chronic inflammation in your mouth, particular with ulcers is not ideal. It is important to reach a state where you are symptom free by using as small a dose of steroids as possible |
| TnDi | Dr. Weil's breathing exercises are great. I use them to fall asleep and relieve stress.often |
| Barry | What is a small dose of Prednisone? |
| TnDi | Yoga tapes are good |
| TnDi | go to a library and see which ones you like |
| bonie | I think my bones in my jaw are getting wek, is this possible, they ache so much |
| bonie | That's weak |
| DD | I also have no ACL in my left knee. This means I need to wear a brace for activitoes like yoga (and hocvkey, which I find is a great way to drestress). It does rather scare off isntructors for things like yoga class (the suggestion is that I go private, which is not what I want). Looking at the half-full side of the equation, my ACL knee brace does mean that I tend to get aprivate class when I pay gor a group ski lesson. |
| susan | I have been diagnosed with rosacea and psoriasis of the scalp along with the OLP. I do know for a fact that all of these are worse when I am stressed out. I have got to learn to cope with stress. |
| drburkhart | Tai chi is great also. |
| TnDi | are most people in this chat room over 50 yrs. |
| drruss | While I understand the issue of oxalates and kidney stones to be of concen, the ratio of benefit to risk falls squarely on the side of benefit. Just vary the foods you eapose yourself to. As for omega-3 supplements, I think there is ample evidence to suggest benefit in the settng of LP. GLA, which is found in black currant oil and evening primrose oil, may help lessen inflammation. GLA is also found in borage oil, but I prefer EPO or BCO. I have moved more in favor of |
| DD | I'm not over 50. |
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| TnDi | Kutapressin I was told is often helpful for psorisis |
| Clara | I am |
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| bonie | I am |
| susan | I am 49 |
| kerr | Barry:this is difficult to say since prednisone taken at high does for a short time is very different from taking a small dose chronically. Tell me your regimen and I can be more specific. |
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| borka | i am |
| Psl | Are there any new treatments for OLP or do we just have to try to do yoga and other things to decrease stress? |
| DD | There rae a lot of fruits and veggies without oxalates. My mother has a very restricted diet due to short gut syndrome (she survived a terrible accident) and eats a wonderful diet. |
| drburkhart | Susan, where do you live? There are many stress reduction programs. I think that developing coping skills is highly beneficial. Through my work with patients who have lichen planus, I really believe that this is sometimes underdeveloped. |
| susan | I live close to Jackson, TN |
| Barry | Alternate 10/12.5 mg. daily. 100 mg Diflucan, 50 mg. Imuran, Dexamethosone and Curcumin |
| bonie | I am on prednisone right now 2o miligrams every other day, and I have a bottom lip for the first time in 2 years and it feels wonderful |
| barb1602 | I am 62. |
| drruss | I've had bilateral ACL repairs and am quite cautious with my knees. Still, a therapeutic yoga practitioner will know how to work with you while lessening the potential for hurting yourself. |
| kerr | Psl: yes there are relatively new treatments, particularly the use of new topical immunosuppressant medications like tacrolimus which we have had some good success with. |
| DD | I've been taking Evening Primrose Oil GLA fo rPMS. It makes a marked improvement. I haven't been trackinga correlation with my LP, but I will start observing (and take it more regularly). |
| drruss | EPO has been suggested to benefit people with PMS, too. Typical dose for EPO is 500 mg twice daily. |
| debs | anyone ever study things like if hair dye or pesticides may affect lp? |
| Psl | A dermatologist had me try Prothophic, but it caused tingling and burning in my mouth, so I stopped using it. I now just use Triaminicolone. |
| Clara | Is tacrolimus a prescription drug? |
| bonie | I get vitiaman b 12 shots once a month |
| drburkhart | Everyone, I just want to again mention the use of journaling. It is aslo important to write down what you are eating, what types of activities you are doing and how you are feeling. You can make correlations on your own. Most people do not even remember what they ate yesterday. |
| Clara | Is tacrolimus a prescription drug? |
| pro.parachatgroup.com | [2009] touser 8 MINUTES TO GO. Room will be on for 5 minutes after the session for exchanging emails. |
| drburkhart | Also, cut the negatives from your life if possible. Surround yourself with people who are positive even if it means finding new friends! |
| DD | Isn't Diflucan an anti-fungal? It's side effects may be worse than the Prednisone. If you gain weight from Prednisone, exercise will help more than you miught believe possible. Find an activity you like enough to enjoy! |
| kerr | barry: 10/12.5 mg is a moderate does and the imuran is to allow you to take less prednisone (a steroid sparing drug). If you have been taking these drugs for a while it is important for you to get routine blood tests to be sure you are not developing any adverse reactions. best of luck |
| Psl | Is anyone going to answer Clara's question about tacrolimus? Is it a prescription? |
| drruss | Another apesct of journaling is that it can be another good stress reliever. Data show that the simple act of keeping a journal can enhance proper activity of the immune system. Be honest with your journaling (write about what's bothering you) and remember, you need not keep what you write if you're afraid someone will see it. And yes, tacrolimus is a prescription drug. |
| kerr | clara; yes. the topical formt is marketed as protopic and it comes in two strengths 0.1 and 0.003 |
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| drburkhart | Everyone, another factor is to make a list of any questions you have and do not be afraid to ask. Go back to your doctor if you have a problem. Please read our section on "Chronic Disease" in the Life style section. |
| susan | Thanks for all of the destressing suggestions-I am going to start trying these immediately. |
| DD | Sometimes just telling people that stress/how you are coping with it is an issue helps. I wasn't about to tarde in my husband, even though his stress was a major source of mine! WE ahve found that my LP has actually helped strengthen our relationship, and helped us both cope with stress in a more healthy manner. |
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| drburkhart | Dr. G, Pennybaker, right? |
| TnDi | nystatin seems to help my OLP much more than /Fluocinonide, also had a toenail fungus. Any connection to OLp |
| drruss | DD - that's great! |
| bonie | Unless you have olp or lc it is hard to understand the pain that we must go through |
| debs | Dr B. any chance of adding an open chat room to your site? I get many e-mails from others and lots of people just want to talk to someone else with this disease...that helps releive stress too! |
| drruss | There is a mind / body therapy called mindfulness meditation that has been shown to significantly lessen pain - look into books by Jon Kabat-Zinn. |
| drburkhart | DD, I just saw a segment on the news last night about the benefits of having a partner while coping with cancer. It is truly beneficial to have that support of a close person. |
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| DD | Isn't Nystatin an anti-fungal? AS is diflucan? Why are people stating that antifungals help more than steroids... does this mean that LP is fungal, or that people are suffering more from opportunistic fungal infectiosn that take advantage of the LP lesions? |
| kerr | TnDi: toenail fungus is unlikely to be related to LP, although LP can cause nail changes |
| Marie | Type herMarie My sister has multiple problems in addition to LP. Her Doc has prescribed neuronton for the other conditions an her LP has improved. Have any of the Docs observed this with their patients? |
| barb1602 | An open chatroom would be an answer to prayer. It would help so much to be able to connect with people who understand our disease. |
| Clara | how many of these cases of OLP turn into cancer? |
| bonie | I feel this chat room is very helpful and to think I waited so long to get on it |
| susan | me too |
| Clara | Cancer was my greatest fear when I noticed the lesions? |
| kerr | DD There is no data to support a a fungal cause for LP. A more detailed history would likely explain why an anti-fungal gave more relief than a topical steroid. |
| Anle | These discussions are very informative. |
| DD | I have found an open chat room for all skin disorder sthat is great: SkinCell. It is based in the UK, moderated so that no one gets nasty, and the members are truly supportive, It even has a rant room where you can vent frustrations without stressing the people around you. If Baylor can't create an open chat group for OLP.LP people, then consider SkinCell. Th ebest I've found! |
| dfw | Bye Bonie, will talk to you later. Love ya, dfw |
| drburkhart | Clara, we usually see the erosive types that become malignant. And, it is usually only in long-standing. Unfortunately, sometimes cases are reported when the origianal diagnosis was not definite. So, it is important to continue to be checked and moitored. Additionally, if you think a change has occurred, go in. |
| debs | Art...I have an idea and will contact you later to see if it will work. |
| DD | Who wants to trade emails? |
| drruss | Clara, the greatest concern is getting the diagnosis right because OLP can look like other diseases. SOunds like you've been well cared for in this respect. |
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| kerr | Clara: very few patient with lp develop cancer in the site of the lp. It is important to control the symptoms and get regular check-ups with the same specialist over the long-term |
| Clara | I haven't had a biopsy yet...doctor is very confident and sure it is not cancer and is OLP, and is leaving it up to me. |
| Anle | I'll leave my 3-mail at the end and would like to discuss our common problem. |
| drburkhart | I would like to caution everyone about open chat rooms. We have this format because we can follow up with patients and clear up misconceptions. I am always available to get answers for you and we feel that this is the best way. |
| DD | Dr B, Dr Kerr said you would connect him and me after the chat/at the end of it. Pleas give me instructions! |
| pro.parachatgroup.com | [2009] touser Thanks to our two guests, Drs. Kerr and Greenfield, and to Dr. Burkhart for being the spirit behind this See you all next time. Transcripts will be posted later today. Exchange emails now. Room will be closed shortly. |
| drburkhart | DD, just email me at nburkhart@tambcd.edu |
| TnDi | Thank you |
| debs | Thanks the docs for making time for this! |
| Clara | Thank you |
| susan | thank you |
| Psl | Ppleonard@aol.com |
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| kerr | it was a pleasure |
| Clara | bonie are you there and ready for my email? |
| drburkhart | Thanks to Dr. Greenfield and Dr. Kerr. You were great! |
| debs | my e-mail is peakmontana@yahoo.com |
| TnDi | tndishort@aol.com |
| drruss | Thank you all, and be well. |
| DD | deirdrechic@yahoo.com |
| Anle | Thanks to all. |
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| barb1602 | Thank you for great help and hope. |
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| .............. Log stopped at Tue Aug 05 08:19:46 PDT 2003 ........... |