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Lichen Planus for 16 years

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Natma13
Natma13

Hi I have been suffering from Lichen Planus for last 16 years. I have tried everything over these past 16 years including natural remedies and doctor prescribed (turmeric, various steroid creams - the current one i have been prescribed has 0.1% betamethasone, coconut oil, balms); however, it has only gotten worse. I have visited doctors, dermatologists, skin specialists, dieticians, nutrionists, and natural remedy health practitioners with no avail. If anyone else has experienced a similar outcome and has found a remedy please do let me know. I have completely turned my diet around over the past 16 years, although I have always been health conscious and eat a lot of veges and avoid sugar and processed foods, I have taken this one step further by ensuring I am consuming all sorts of green veges, fruits, good fats (such as avocados), supplements and drinking lots of water and have been exercising 3-4 times  a week all my life.

1 like, 24 replies

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  • margaret29034
    margaret29034 Natma13

    Posted

    Have any of these things you mentioned helped at all?  I have recently developed oral Lichen Planus and a bit on my face also.  The steroid mouth wash is helping but not ereadicating it.  Steroid cream also helping face but no cure.  I can hardly believe that no one has found a good answer, although some seem to have remissions at least.  Lots of sleep seems to help a bit.  Good diet of course is helpful for some.  Lots of water helps me a bit.  We need answers!  Anyone with something new to try?
    • abbey05154
      abbey05154 margaret29034

      Posted

      Have you tried vitamin D supplements? I have been taking 10000u a day as well as taking Dr. Wilsons adrenal supplement.  I have not had my OLP return. 
    • margaret29034
      margaret29034 abbey05154

      Posted

      I will increase the Vitamin D but if you google around, there are limits I gather as it is fat soluble and so builds up in your system.  I am now at 3000 iu will keep increasing ...  thanks for the reply.  So happy for you that your's has not returned!  My goal also, of course!

       

    • christine57357
      christine57357 margaret29034

      Posted

      I saw an item on You Tube where an American doctor was saying that Purslane Capsules help OLP.   I was so keen on trying anything new that I decided to give it a go.  its now been six months since I started and although I still get flare ups, I feel they dont last quite as long.  I also use Dermovate mixed in equal quantities with Orabase which I apply to the OLP and remove after 20 mins.  Hope these ideas appeal to you Margaret.
    • Natma13
      Natma13 abbey05154

      Posted

      Hi Abbey,

      ​I used to take 8000 IU vit D supplements every day but some one mentioned on this forum that it can increase itching so I stopped taking completely.

  • patrick64832
    patrick64832 Natma13

    Posted

    Hi Natma13, i have Oral Lichen Planus and like you i tried everything, 4 months ago i found (on the net) a medication Low Dose Naltrexone and it has lowered my flares and helped me to sleep, i have to say it is the only help i have found and it does not conflict with my Cardio meds or any meds i am taking ..Google LDN for Lichen Planus and check it out , it works for me and is so cheap to buy, worth trying...
    • penny33699
      penny33699 patrick64832

      Posted

      I'm really interested to hear about LDN.  Did you persuade your doctor to prescribe it?  Where do you live?  I want to give it a try but need more information to show to my doctor.  I have oesophageal LP.  

    • patrick64832
      patrick64832 penny33699

      Posted

      Hi penny33699, i live in south Ireland, you shoul not have a major problem getting a script as Naltrexone in higher doses is used for Addiction , it is easy taken as i have it in liquid form, my chemist (drug store) makes it up for me it costs about 20euros a month supply and i am on Cardio meds and it does not cause any problems...Google it , just google "LDN for OLP help and you can read about it..no it does not work for everyone but it is a major help for me and well worth a try...

    • penny33699
      penny33699 patrick64832

      Posted

      Thanks for replying Patrick.  It sounds like it could really help me, especially as I was also diagnosed with MS in 2012.  Two for the price of one!  All the best to you.
    • patrick64832
      patrick64832 penny33699

      Posted

      Hi Penny , if you live in Ireland there are 4 Doctors who will after meeting you provide you with a script, i went to him and he gave a script for LDN i showed this script to my family GP and he writes the LDN script for me now...patrick..
  • abbey05154
    abbey05154 Natma13

    Posted

    I initally took high doses of systemic prednisione for about a month, which got rid of most of the OLP.  I then started taking high doses of vitamin d (10000u/day) in addition to Dr. Wilsons adrenal supplements.  I have not had my OLP return.
  • belle28935
    belle28935 Natma13

    Posted

    Hello Natma

    I'm sorry to hear yor olp is getting worse at the moment so is mine .I take betamethasone sol tab s ,try to do this for short time only ,

    Started new job so not getting lots off sleep ,my diet is limited but have smoothies and lots of soup ,try different food but it's just quite uncomfortable so just go back to smoothies and soup and my lovely soft brioche rolls ,baked pots ,porridge.going back to dental hospital when appointment comes up to see what else they can do for me ,what do you manage to eat ?

    • Natma13
      Natma13 belle28935

      Posted

      Hi, please read the post by Greg. I think I am going to try St. John's Wort Extract as he mentioned.

      Kind Regards,

      Natma

    • Natma13
      Natma13 belle28935

      Posted

      Hi Belle,

      ?Nothing worked so far but still looking for some good solution. I might try SJW tablets asap. BTW I don't have OLP. I have LP on my shin area.

  • greg73500
    greg73500 Natma13

    Posted

    I had a combo of Lichen Planus + Lichen Simplex Chronicus all over my front legs for 20 years, and just like you, I tried eveything in the book to no avail... Until I tried oral St. John's Wort Extract @ 600mg/day for about 6 months, over 3 years ago. The disease hasn't returned since, and even the long-term scars are gone.

    I won't bother you with all the scientific details that suggest St. John's Wort might work for many others, but if you do want additional info, please read my post "20 year case of Eczema cured with St. John's Wort" in the Alternative and complementary medicine section of this site. If you have any questions, I'll be glad to answer.

    Best of luck!

    • Natma13
      Natma13 greg73500

      Posted

      Hi, good to know that St. John's Wort Extract worked for you. I will surely give it a try.

      Just a question to ask if  you changed anything in your diet at all? Also I am bit confused that if you had Lichen Planus or Eczema?

      Kind Regards,

      Natma

    • greg73500
      greg73500 Natma13

      Posted

      No change in my diet whatsoever and I eat and drink a little bit of everything from the healthiest bio-veggies to some of the worst varieties of junk food you can imagine! My understanding of my former skin disease is that it had very little to do with food, but probably a lot more to do with a damaged skin layer that allowed bacteria to proliferate and trigger chronic itching and inflammation. I just don't know what may have caused the initial skin damage, but I do know that whatever was wrong in the structure of my skin has been repaired after I used SJW.

      On my very first visit to a dermatologist over 20 years ago, I was diagnosed as having Lichen Simplex Chronicus, which my regular doctors just kept on referring to as "Eczema" thereafter. Just a few months before trying out St. John's Wort, the last dermatologist I saw told me a more accurate and revised diagnosis for my condition was a combination of LSC + LP, based on the appearance of the lesions. At that particular time, my condition was worse than it ever had been, as the lesions looked more like severe bruises following some kind of accident. I refused any of the proposed treatments by the last dermatologist, because after 20 years of trying so many options, I just didn't believe any longer that any conventional solution might be of any help.

      Just two things if you are indeed going to try out SJW:

      1) Make sure that you are not taking ANY medicine that might interact with it (including the birth control pill). Asides from the occasional Advil, I was taking no other medicine asides from SJW during my 6 month healing period. If you are taking any medication, check on the web, through your pharmacist or a doctor if there might be such interaction.

      2) Try to be as patient and as faithful as possible with the treatment. The initial effects didn't materialize before 6 weeks of treatment in my case, and another person I have helped successfully claims that visible effects only materialized after 12 weeks. His condition was far worse than mine however, with lesions all over his body; he now claims to be 90% cured and suspects that the 10% of lesions remaining might be permanent damage caused by long-term corticosteroid usage. Everyone reacts differently with medicine of any kind. My dose of 600mg/day may also not work for everyone so consider it a guideline. Some people might be successful with less, others with much more. I don't think it's possible to find the perfect dose for everyone, nor to know if it will work at all, and in which specific timeframe. Until science has more definite answers, we are all guinea pigs at the end of the day.

      Best of luck!

    • Natma13
      Natma13 greg73500

      Posted

      Hi greg,

      Sorry for the late response. Thanks a lot for the detatiled information. I had surgery for breast cancer last year. I refused Chemo but I did go throught the radiation. Due to that I do take lots of herbal supplements as a preventive measure for cancer but I don't take any over the counter medication.

      I will sure give it a go to SJW because so far no one has given any hope for Lichen Planus treatment.

    • greg73500
      greg73500 Natma13

      Posted

      Hi Natma,

      Now this is quite an interesting coincidence... because I now know that we have surprisingly similar health profiles: I was diagnosed with MBC in 2005, had surgery, but refused all adjuvent treatments. Instead, I decided to study natural medicine and decided to take my chances with herbal supplements for two years following this ordeal. I took Indole-3-Carbinol, EGCG, Turmeric and Inositol Hexaphosphate among a few others. 11 years later, I am still cancer-free!

      I wish I would have known about SJW back then because there is growing scientific evidence that it may be helpful against cancer cells. Not only that, but SJW is known to be an excellent herb to combat the anxiety associated with a cancer diagnosis. Although interactions are a complex subject and we cannot know for sure about any risks, I haven't read any warnings about using SJW along with other herbs (only with conventional drugs).

      I have always wondered if there may have been a link between the "eczema" which affected me for so long, and my cancer diagnosis. Science currently hasn't established such a link, but I wouldn't be surprised if there was. Regardless, I think you may be a prime candidate for trying out SJW and hope you will be as successful as I was in eradicating this very annoying disease.

      Please keep me posted about your progress... I am currently helping many people on the Web with their atopic dermatitis and everyone likes to share success stories and testimonials.

      All the best,

      Greg.

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