Author Topic: Remedies for Lichen Planus  (Read 6276 times)

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Offline deirdre

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Remedies for Lichen Planus
« on: Tuesday March 23, 2004, 05:51:36 PM »
Last week I saw a dermatologist who specializes in autoimmune-related skin disorders. I thought I'd summarize what he had to say to me about Lichen Planus.

1) It is idiopathic (meaning no one knows what causes it), and results from the lymphocites deciding that they need to do something in the skin. It can be diagnosed by biopsy even before the characteristic "lichenoid" lesions develop, and a clinical diagnosis is considered conclusive (even without a biopsy) once the lichenoid patches develop as they are not seen in other skin disorders.

2) After implying that I shouldn't be seeing him as my LP is pretty much (though not completely) under control, he did confirm that my anti-LP regime is exactly what he would do if he had it on his own skin: as soon as I feel the pre-LP tingling, I get aggressive with the Lyderm/Lidex cream, and after a few days the tingling stops, a lesion rarely appears, and I can stop with the steroids. He told me that when the pre-LP itch/tingle starts, that area of skin will show the lymphocites doing their LP-characteristic thing even though the characteristic lesion has not yet appeared.

3) I asked about Protopic and Eladil (which lists shingles, which I have had twice in the past 12 months, as a contraindication, so I did feel I needed expert advice). He said that in his experience steroids are more effective for LP than the new class of drugs (immune-moderators/suppresants -- there are slight differences). He said often patients who do not respond to steroids have been underprescribed, that is, given something too weak to do the job. He said Lyderm/Lidex (Fluocinonide) is about the weakest steroid that will work on LP. It is classified as a medium-strength steroid, and some people need to go to a strong steroid. I asked about long term use and skin thinning, and he said that using it as I do (only as needed, and then aggressively but only for a few days) I am not at risk for that.

4) Would you believe ACCUTAINE for LP? He mentioned that had I come to him a year ago, when my LP was extensive and extremely painful, he would have suggested I try an oral treatment, but NOT steroids. He said that in his experience, Accutaine, which is an oral acne drug, seems to make LP clear up. No one knows why, but it works.

Wow -- something new in the list of potential LP remedies to consider!


O Skin, thou art sick! / The invisible worm / That flies in the night, / In the howling storm,
 
Has found out thy bed / Of crimson joy: / And his dark secret love / Does thy life destroy.

Offline olivercat

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Re:Remedies for Lichen Planus
« Reply #1 on: Monday March 29, 2004, 02:22:26 AM »
Thank you so much for passing along all that info.  Where did you find a doctor that specializes in auto-immune diseases?  

I'm going through my third bout of LP and haven't gone to a doctor this time around since there was so little they could do last time.

Offline deirdre

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Re:Remedies for Lichen Planus
« Reply #2 on: Monday March 29, 2004, 04:30:35 PM »
Hi Olivercat,

I managed to find a dermatologist specializing in autoimmune-related skin conditions only after I realized that such a person did exist. It took about a month to track one down in the city where I live (Toronto), and I had to email someone currently working at Johns Hopkins (Baltimore), who had previously practiced in Toronto for over two decades, to get a name of someone local. I do not know how common this area of expertise is, but what I would suggest is contacting the dermatology department of the medical faculty that is closest to where you live, and see if they have someone on staff with this type of expertise, and then ask your family physician for a referral to that specific person.  Alternately, you could contract Dr. Nancy Burkhart through the excellent LP support group at www.tambcd.edu/lichen and see if she has the name of a doctor with a specific interest in LP in or near your community. She may be in a better position to help you if you live in the USA (you haven't stuck a pin in SkinCell's map so I don't know where you are), as her network of contacts seems to be most complete in her home country, however she does have contact with some LP specialists outside the USA. That web site is very useful for anyone with LP or OLP (Oral Lichen Planus) and if you haven't visited it I would recommend that you do, even if you aren't keen to ask for help in locating a doctor.

With the exception of Dr. Burkhart, who has a web site devoted to LP support and publishes her name with an email link at that site, I am not willing to publish the names of doctors on the Internet.

I would urge you to see someone about your LP, even if you didn't feel that doctors helped much with your last two outbreaks.  LP does respond to treatment, although it does not go away quickly. Most of the remedies that will hasten its departure do require a prescription, and so seeing a doctor will benefit you. In the past did you see a dermatologist? If not I would strongly recommend that you do so now. The dermatologist may be able to help you in ways that a family physician may not (in my experience if you need anything stronger than a mild strength of steroid then you must see a deramatologist). I know that depending on where you live, seeing a dermatologist may be a logistical hassle (getting a referral, etc.) and/or expensive. Still, LP is painful when it gets extensive. Please don't wait until you are desperate to start the process!

I'm sorry that you're having a third bout of LP. :hugs:  
« Last Edit: Monday March 29, 2004, 04:32:18 PM by deirdre »
O Skin, thou art sick! / The invisible worm / That flies in the night, / In the howling storm,
 
Has found out thy bed / Of crimson joy: / And his dark secret love / Does thy life destroy.

Offline olivercat

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Re:Remedies for Lichen Planus
« Reply #3 on: Tuesday March 30, 2004, 01:44:00 PM »
Thanks.  I'm from Pittsburgh area.  Last time I had a wonderful dermatologist who has since moved from the area.  She did help with information, but at that time the only treatment was steroids and steroid ointments.  I try to tough it out without steroids since they do so much long-term damage.

All three of my outbreaks have followed exposure to the "natural" insecticide pyretherin.  I wonder if anyone is researching the chemical exposures patients have had prior to an outbreak of LP.  I react to all kinds of things - mostly fragrance related - but with pyretherin it starts as a mild rash and then just keeps going.  Something in the rash changes my skin cells in a way that my body think they're foreign and attacks.  A biopsy showed millions of T-cells attacking the rash.

I have realized from joining the forum and reading other peoples experiences how much my life is changed by this.  I avoid movies, crowded places, etc. since I can be sick for a week just from an overdose of second-hand aftershave!  We never invite people who wear tons of perfume to our house, so it even limits who our friends are.  Once we had to stay up and bathe three cats after having over a couple that loved cats and reeked of perfume.  The cats smelled like Old Spice!

I avoid shaking hands, using telephones, etc.  We order all our personal and household cleaners from fragrance-free manufacturers.  

I wonder if there will ever be a "fragrance-free" section in resurants like the smoke-free sections.  (I'm a smoker and don't mind not smoking around people, I just wish I could avoid their perfume as easily!)

Offline Hvns

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Re:Remedies for Lichen Planus
« Reply #4 on: Tuesday March 30, 2004, 02:35:01 PM »
 :hi: olivercat and welcome to skincell! You post is very imformative, I never even knew people could be bothered by so many differant things. It makes sence though, there is so many chemicals in everyone now. I hope this post finds you doing well  :)
Hvns
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Offline deirdre

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Re:Remedies for Lichen Planus
« Reply #5 on: Tuesday March 30, 2004, 08:40:41 PM »
Olivercat,

Pittsburg is a great city. My husband used to spend a lot of time there on business, and sometimes I would join him. We aren't in frequent contact with our Pittsburgh friends, since it's been a while since he left the Pittsburgh-based company, however I was always impressed with how welcome everyone made me feel, how genuinely warm and friendly Pittsburgers are. The landscap eis also beautiful, and (if we are trying to describe what a neighbourhood looks like) my husband and I consider "it looks like Pittsburgh" to be high praise indeed. It is one of my favorite American cities (almost as nice as Canada :lol: ).

I'm really sorry that you are having problems with fragrance allergies. So many people do! I've seen teeny tiny notes in theatre/concert programs that ask that people refrain from wearing perfume, but you need to look for them with a magnifying glass. It is extremely difficult to find fragrance-free cleaning products, not to mention fragrance-free shampoos, etc. The craze for botanicals is just making it harder to find suitable products. Instead of cutting back on fragrances, many manufacturers are actually steeping up the amount of fragrance in certain products (laundry detergent, dish washing liquid) and stores are giving less shelf space to fragrance free products to accomodate al the stinky stuff.

Your concerns about long term use of steroids are valid, but you may want to consult with a dermatologist before determining that "toughing it out" is your best course of action with LP. In my experience, and this has been confirmed by experts, it is possible to prevent LP from developing into a fully blown lesion that takes months to go away by using a medium-to-strong topical steroid aggressively (2 to 4 times/day) AS SOON AS THE FIRST TINGLING starts (e.g. when the skin has yet to change colour or change beyond getting itchy and possibly also a bit bumpy).  The T-cells are already attacking the skin, but the skin has not yet sustained damage, and the symptoms wil lactually stop within a couple of days.

What this means is that you use a lot of steroids, but for a very short time. No one area of skin is exposed to prolongued steroid application, which cuts the risk of skin-thinning to a minimum.

I am not a doctor and so I don't know if the risk is cut to zero, and you may want to speak with a dermatologist to confirm that the strategy of LP management that I have outlined may be a legitimate option for you. All that I know is that it works for me, and as I know just how awful LP can be (painful, disfiguring, making it hard to sleep and to concentrate) I urge you to consider trading in stoicism for treatment.


 
O Skin, thou art sick! / The invisible worm / That flies in the night, / In the howling storm,
 
Has found out thy bed / Of crimson joy: / And his dark secret love / Does thy life destroy.