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.
great sky....go for it!
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.
Sky,
Give it a try...anything that can help is worth the effort. Good luck! Keep us 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.
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.
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.
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.
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!
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.
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..
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.
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.
Hi Sky,
I'll certainly keep you company on the fasting thing. I assume it is full fasting with only water to drink. Private message me with the details if you decide to do it.
regards
Margaret
Hi Margaret. The triels can be found on NHS clinical trials lichen planus. There is one new oral and one new topical. Been knocked back for the topical as have 2 conditions not one. Thankyou so much for joining me on the fasting..wonderful. Also Daily Express ran something today on Naltrexone a wonder drug for MS and other auto-immune disorders..if lichen is an automimmune disorder that is. The drug is not pasted by medical authorities yet and is presently used for alcoholism or something like that..am looking into it and will talk to my doctor. I will PM you
I recently heard about low dose naltrexone that you mention with respect to supporting the thyroid and mediating improvement to the autoimmune aspect of hashimotos.
Good Luck with the fast the two of you! Thats great. I used to fast periodically and found it helpful.
At the moment I'm trying to get myself to take supplements and to enrich my nutrition and intend to follow the regime promoted by sky willow so I'll be along parallel with you!
Best Wishes
how are the two of you getting on? made a start with the fast yet?
do keep us informed ....so we can be part of your support group!
Not quite ready to start fast..have to time it as I work. Been turned down for 2nd med trial as have 2 lichens. Any idea how to pm on this thing as I have been looking for it. Seeing specialist on Wednesday due to severity of outbreak. Using honey..sticky thing that..checking out tincture of burdock and tincture of tumeric also colundra. Will possibly have info on new oral meds next week which are unlikely to apply to me having 2 lichens..but you never know. Spoke with doctor on potential of the other drug I mentioned..he seemed very shocked..and no I cannot have it on prescription..darn
I looked Naltrexone up. Not surprised your Dr. was shocked. He probably knows it as a withdrawal-from-opioid-addiction aid and hasn't heard of the low dose business: "FDA-approved naltrexone, in a low dose, can normalize the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders".
I agree it's probably a bit extreme to try on LS, since there are liver effects. If I had MS, though, I might try anything...
sorry to hear you're having a severe outbreak. might a cooling plain yoghurt help? or calendula? olive oil can also be soothing and it solidifies in the fridge. you click on the small envelope beneath the name of the person you wish to PM. x