Hi about to try a little experiment on lichen planus and lichen sclorosis

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I have lichen sclorosis and lichen planus of the vulva. I have had this for about 14 years. Dermovate is not the best control medication although it is just about all there is. My symptoms are at present full blown. My dermatologist is thinking oral steroids..I am not thinking that way at all. I have had a look at the 48 hour fast idea which is thought to reset the immune system. You have to do this one twice a year. I am going to give this a shot in September so anyone who wants to join me on this give me a shout cause I could do with the support. Also there is a new study on tumeric and oral lichen planus(mucus membranes) Apparently in clinical trials the oral lichen planus cleared in 6 weeks using a topical turmeric ointment which was specially prepared.However the intment did make the patients very sore during the 6 week process.  If the fasting does not work then I guess it is to the kitchen for me with a lot of tumeric root. You can find all of this on this net just put in 48 hour fast resets the immune system or tumeric heals oral lichen planus. We can but try, hope, and try again..maybe this can work.

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  • Posted

    I use Advantan fatty ointment which I feel is a better option because it is not quite as potent and is easily absorbed. Just had fasting because of a Crohns flare and colonoscopy. My son has me taking something with turmeric in it amongst other things. I am a sceptic but if it helps me with my multiple conditions I will be the first to admit it. Good luck with your attempts to control your LS.
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  • Posted

    Sky,

    Give it a try...anything that can help is worth the effort. Good luck! Keep us posted.

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  • Posted

    I'm pretty sure I'd try almost anything to avoid oral steroids. On the other hand I know a couple of people with different conditions who would have died without them. As long as it's a short term thing.
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  • Posted

    Just wondering...since LS is an autoimune inflammatory condition would it not be best to try to treat it systemically by ingesting the tumeric than just by an external application? From my reading I gather it arises several layers down in the dermis so the best thing would be to catch it at source. And then you wouldn't have the irritating side-effects of a cream? Does anyone know if there are any statistics about LS in countries such as India where tumeric is common in the diet? It would be really interestinng if there was a lower incidence there.
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    • Posted

      thats an interesting question. i would also like to know the answer. how can we find out?
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  • Posted

    Have you tried calendula in the purest ointment that you can find?  Also, probiotics seem to help.    I rarely have any symptoms.  If I do, I use a small amount of the clobetasol.  Also, I have been told  that clobetasol works best with a small amount of topical estrogen.  Please talk with your doctor first regarding the estrogen.
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    • Posted

      Kathryn,

      Curious..how have you kept your flare ups at bay. Is it  by managing your stress,  having family support or your treatment plan? How often to you use the clobetasol with the topical estrogen? At this time sitting or walking for long periods is uncomfortable for me. I did a short yoga workout this morning that seemed to help. I'm hopeful that soon this flare up will calm down.

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    • Posted

      Wil816,

      I believe that it is the calendula ointment.    Also, I only wash with Johnson's baby bar with added moisturizer.  After my shower, I put on the calendula.  Stress does not seem to cause any flare-ups.   I rarely use the clobetasol and estrogen .  I believe that the baby soap, calendula and the probiotic yougurt  have almost cured me.  

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    • Posted

      thats great kathryn...thanks for the tips. i will try calendula...i did use to use it for any burn or insect bite...i remember it was soothing....sort of a connection with my (semi) hippy past.. so thanks for that. have you noticed that the perfume.....oh whats it called...very distinct smell...has come back. i didn't used to much like it but now i do almost for sentimental reasons...not that i hanker for the past...i am actually really enjoying the present...inspite of LS WHICH I SEEM TO BE ABLE TO CONTROL TO SOME DEGREE...oops sorry shouting!! what i 'm finding at the mo is my boundaries...its kind a fun. how much not so good but tasty stuff can i enjoy before i get a twinge...and then how quickly can i reverse those symptoms!!

      probiotics for ever!

      xx

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  • Posted

    I agree oral steroids are not ideal- and take care when or if they DO prescribe them for you that the dose isnt too high in the first instance- I had a  high dose of oral steroids for asthma and living on my own had no one to care for me - or to notice how ill I became. It was when a nurse friend called that she thought I needed help immediately, and I had the dose reduced pdq. - My asthma was great and the undercarriage never better but at the expense of the rest of me!

    As to the fasting - Go for it - but carefully - you don't want to faint or get light headed when out and about

    As to the turmeric - Where is the trial of topical application being carried out? It wouldl be really interesting to foolow that up

    I think I would go down the oral root for Turmeric - but be careful to wear suitable clothes as it is a monster to remove if dribbled onto self!

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    • Posted

      Hi. the oral lichen planus study was completed in India with very good results although the patients were very sore. The method is also online. Thing is my dermatologist is a member of the lichen planus med board. She told me in Spring that a treatment other than dermovate is a long way off. But, I think there are some trials being held here..I will have to check NHS trials because I would volunteer as I have had enough of demovate..14 years of it..
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    • Posted

      Just a quick note to say there are 2 clinical trials in the UK but these look very steriody. Both look as though they are in Nottingham. Have emailed them to see just what these are.
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    • Posted

      Hi, is this at Queens Medical Centre?  If so, I'd be very interested to see what they are doing.  I no longer live in the Nottinghamshire area, but would be prepared to travel there.
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    • Posted

      so sorry to hear about your distress whilst living alone....but i'm so glad you got the support you need....well done x
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