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Lichen planus

Posted , 5 users are following.

sheila_j123
sheila_j123

I was diagnosed with both skin and mouth lichen planus a few weeks ago. I thought i was the only person on the planet to have this dreadful condition untill i came accross this site. Im so relieved i did. I have the rash/ spots all over my shoulders bottom of my back my arms and legs . Its not a pretty sight its even on sides of my feet which itch the most. My doctor saud there is no cure. WHAT!!! No cure ? Cant believe thst in this day and age . Maybe not enough research , i dont know. Anyway treating myself with calomime lotion for the itching . Difflam mouth wash and mouth spray it helps quite a bit . The worst is brushing my teeth . I was using bicarb but my mouth didnt feel clean and fresh. So i took a trip to holland & barrett and gor some toothpaste with aloe vera in it. Whst a difference its made i can actually clean my teeth without screaming in pain. I hope this helps anyone suffering with this awful condition. Its not a cure but it really helps . I will continue looking for more relief. I have just started with vitamins a b e & zinc also eating vanilla yogurt it helps keep inside of my mouth cool

0 likes, 10 replies

10 Replies

  • karen41728
    karen41728 sheila_j123

    Posted

    Hi Sheila

    Sorry to hear you have this awful disease but you are not alone.. many of us ladies on here have it and it is good we can all talk to each other! I am almost 59 and was diagnosed with it about 15 years ago around the same time I had an abnormal cervical smear.. but it's only the last few years I have had these awful symptoms.. how old are you Sheila have you had any abnormal smears! It is an autoimmune disease. I can't have anything spicy or citrus it just sets my mouth off..

    • sheila_j123
      sheila_j123 karen41728

      Posted

      Hi Karen

      Thankyou for getting in touch . Im so sorry to hear you have had it for 15 yrs .How do you get by ? If you have any tips i would love to hear what they are . I am 65 and had no abnormal smear tests. I have been heathy all my life apart from being diagnised 3yrs ago with spinal stenosis and taking a high dosage of gabapentin. My doctir said these meds are not the cause of my LP. I dont know how they can say that if they dont know what causes LP in the first place. Also i have had a lot if stress over the last year and i am sure thats whats brought it on. Please let me know how you deal with it especialy the sore mouth . Thanks karen

  • Manda2809
    Manda2809 sheila_j123

    Posted

    Paleo diet helps completley clear up my mouth. Just obviously no fruit. And drink only water. It's a hard diet to stay on for me so I try to do 5 days on 3 days off. My dentist gives me a predisone lidocaine mouth rinse to rinse and spit with, this helps speed recovery quite a bit . Good luck!

    • sheila_j123
      sheila_j123 Manda2809

      Posted

      Thanks Manda

      Only problem for me with that diet is that theres a lot of meat eating in it snd i dont really eat meat i do keep away from certain citrus fruits . Its really hard to know what to eat and drink at the moment as this disease is New to me. But trial and error !

      Thanks Manda

  • gillme1955_UK
    gillme1955_UK sheila_j123

    Posted

    Hi Sheila, sorry to hear of your problems. I only have oral Lichen Planus thankfully. For the last 12 months I have been prescribed and use daily Flixonase Nasule drops which are used diluted as a mouthwash. I can use up to three times a day but just do once at present. I am so pleased with this and can eat and drink whatever I like without any problem.

    Hope this helps!

    Kind regards,

    Gil 

    • sheila_j123
      sheila_j123 gillme1955_UK

      Posted

      Hi Gill

      Wow that sounds fantastic.

      Im due at my doctors on wed so i will ask them if they will prescribe it for me . Are you ok with the toothpaste ? Thanks Gill i appreciate your advise very much .

    • gillme1955_UK
      gillme1955_UK sheila_j123

      Posted

      I was originally prescribed it at my local(ish) Dental Hospital in Liverpool who then wrote to my GP asking them to prescribe it so your Doctor may not be willing to just do it. Let's hope! 

      I use Oral B Clinical Sensitive and gave for ages. My dentist thought I may benefit from Colgate Duraphat 5000 which is prescription only and prescribed 6 tubes. Unfortunately one of the ingredients irritates Oral Lichen Planus and it made my mouth really bad!! Stopped it as soon as I realised and it took two weeks of using my other stuff three times a day to get it back to normal! So I'm sticking to Oral B!! 

      XX

    • sheila_j123
      sheila_j123 gillme1955_UK

      Posted

      Thanks Gill

      I will see what my doctor says . The toothpaste with alloe vera isnt to bad .still stings all of my mouth and tongue but not nearly as bad as normal toothpaste .Thanks Gill take care

  • Las_Rosas
    Las_Rosas sheila_j123

    Posted

    Hi Sheila, I originally had lichen Planus on my skin which eventually was treated effectively with immunosuppressants - was 20+ years ago so can't recollect the name. But then it came back but only in my mouth, I've tried everything, including flixonase as a mouth wash which was ok, but following an oral cancer diagnosis last year, now only use natural remedies, try the turmeric golden paste as it's the best thing I've taken over the 20 yrs+ and wish I knew about it earlier!  You don't rub it on but take it orally, I take 1 tsp. Twice day. If you search the internet you will find either a recipe or supplier. Good luck. Ps I use the Aloe Vera toothpaste too! 

    • sheila_j123
      sheila_j123 Las_Rosas

      Posted

      Hi Las

      How awful for you sorry to hear that. I suppose its on everyones mind that has LP .you are the second person to tell me about fixonase. I will definatly be asking my doctor about it on wed when i go to see her.

      Thanks las and i wish you well take care

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