Oral Lichen Planus/ Lichen Planus

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It began for me on February 2, 2015. My mouth hurt, Doctor after doctor told me I had thrush. After thousands of dollars spent....I was seen by a Dr. of internal medicine 3 times...8 vials of blood. An ear nose and throat Dr....an immunologist 3 times...8 vials of blood. A Dr. of infectious disease 3 times....4 vials of blood. NO answers. Meanwhile random rashes were appearing all over my body and my mouth continued to get worse. On June 8, 2015, I deciced ON MY OWN to see a dermatologist. I was diagnosed with Lichen Planus and Oral Lichen Planus. A biopsy confirmed it. I was first given a topical steroid to put on all my random rashes. I also had to put it in my mouth on the back of a spoon. 10 minutes a side and on my tongue and gums. My mouth continued to get worse. Next I was given high doses of Prednisone. 60mg. per day for a week....40mg. per day for a week and so on. My mouth continued to get worse. Yesterday I went back to the doctor....4 more vials of blood. She now wants me to take Plaquenil. 200mg. pills twice a day. I have not taken them yet. I am afraid to. The side effects are so scary! I have to get my eyes checked every 6 months. Can someone please help me? I know I am not dying but this disease is chipping away at me day by day  sad

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  • Posted

    Hi

    I to suffer with both it's just so awful itching burning sweating it's good we can chat on here as not many people have even heard of it. My lichens was diagnosed the same time I had abnormal cells after a smear test for which I had colposcopy I do think the two are connected but the doctors don't seem to want to discuss it I am now on antidepressants for this and I find myself constantly looking in my mouth I'm 57.

    Have you ever had a problem with smears

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    • Posted

      Mine actually started with a yeast infection I could not cure on my own. I am 54. I am allergic to all antibiotics so my OB/GYN wanted me tested for diabetes. That test came back good. It's been all down hill since that day. It was when I went to my doctor for the blood work is when I showed her my mouth. My big toenails are ready to fall off. My fingernails are all dented too. I cry every single day as I see no light at the end of the tunnel sad  I feel broken. I feel bad for my husband because there is nothing he can do. I think I am starting to lose my eyelashes. My name is Barb by the way. Thanks so much for responding!!!!
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    • Posted

      I know barb how you feel my toenails are the same and all my hair is very sparse it's so upsetting I am actually in the middle of a divorce if it's not one thing it's another I can't sleep them am tired when I have to go to work have you ever had a problem with smears Xx
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    • Posted

      I'm from California.  The SF Bay Area.  I noticed a lot of people on this forum are from the UK.  Maybe it's the SF fog and London fog that keeps us from getting enough vitamin D??  Dunno?
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    • Posted

      I am from California too.  SF but moved to Sacramento region a few years ago.  There's no fog where i am so it's not that...
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    • Posted

      I am like you, looking in my mouth every time i am in the bathroom and brush my teeth each time i have a bite of food.  It has become an obsession.  I have the HPV virus, have had it for years but my annual pap smear all come out fine - so far.  I emailed my obgyn to  see if it could be related to it but never got a reply, i think doctors don't have all the answers and it is up to us to research for it using today's technology tools. We cannot and should not believe everything we find online but it can certainly give us a clue as to what we are dealing with and maybe get some kind of directions.  Good luck with yours, i am in the same boat..
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    • Posted

      Hi kaleani

      I am from the UK I'm 57 and had treatment for abnormal cells about 14 years ago around that time my dentist picked up on the LP it was in the very early stages I couldn't even see it but the last couple of years it is really bothering me the burning can't eat anything spicy.

      I also have sparse body hair and itching which is LP my smears are always okay I bled a bit on the last one but this LP is autoimmune skin disease it is definitely connected to hpv, my doctor has given me antidepressants so I won't think about it because it made me really I'll also the doctors won't admit it think they don't want to worry everyone how old are you and when did you notice it ?

      Take care Karen

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    • Posted

      I am French living in California.  I am 10 years older than you.  I don't remember the exact date but about 15 years ago the medical establishments started checking patients for the HPV virus during regular pap smear checkups, before that time they were not checking for HPV - i guess they did not know it existed.  That is how i found out about mine, but mine never caused any problem and so far my pap smear results are always     negative even with HPV.  These days they vaccinate young people for HPV at around 12 yrs old, the vaccine unfortunately is not available if you already have the virus😊keep smiling..

       

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    • Posted

      eventhough my lichen started about 4 months ago, I only came to realize recently that it is, OMG, what I am dealing with.  I am scheduled for teeth cleaning in two weeks so my dentist will take a look inside my mouth again, he is the one who first diagnosed it.  I am also seeing a specialist tomorrow, that (hopefully) will give me a little more direction about what to do next.  I have a pretty good idea what not to do or eat, having researched this lichen to death online, i already eliminated my daily glass of wine and gradually will change other habits or foods.  I love spicy food so it is not going to be easy..i suppose an occasion splurge will not kill me, the thing is to avoid the every day habit.
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    • Posted

      Good luck tomorrow kalean let me know how you get on I will be thinking of you, I know how you feel about the wine and the spicy foods I love both I still have a glass I need it sometimes I'm in the middle of a divorce he cheated on me and he's gone living with her just like that after 25 years

      Take care it's good chatting with you especially us both having hpv and lichen planus xx

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    • Posted

      Hi karen - thanks for asking.  I saw the Head and Neck specialist - that's where my doctor referred me to.  She just looked in my mouth and said no biopsy necessary for the diagnosis, it is oral lichen.  She was pretty casual about it and said she sees a lot of patients with this. She suggested this steroid cream to apply on but only if i want it bacause it is messy and of course 'steroid'.  She just said to keep an eye on it, if it does not change there's nothing to worry about, and naturally, to see her if there are changes.

      i told her i was planning to make some personal changes - less sugar (out with my 2 Sunday doughnuts for breakfast) more natural stuff etc..with occasional splurges..life's too short for constant deprivation.  Which of course includes my glass of wine but weekends only.  That's the plan anyway..

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    • Posted

      That's good kalean at least you seem to have it under control I'm trying hard to cut down on certain things like dairy and sugar but I'm so fed up with it and sometimes my mouth has an awful taste, be careful with steroid Iv heard it can activate hpv great chatting with you it's good we all have each other here.

      Do you go at regular visits to the head and neck specialist or does your dentist keep his eyes on it Xx

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    • Posted

      Oh no, i am not planning to take steroid cream or anything "steroid" if i can help it.  The doctor just mentioned it because i was inquiring about meds.  I am only going to make a few changes in my diet and try natural remedies and see how it goes.  I will do my regular checkups with dentist and doctors. Here is a link you might find interesting, it is a little more complete regarding OLP than other sites i have seen:

      http://bcdwp.web.tamhsc.edu/iolpdallas/q-a/

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    • Posted

      Thankyou kalean this is most helpful please keep in touch I think it's really good we have each other, did you mention to the specialist about hpv as I think it is that the causes the lichens Xx
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    • Posted

      Hi kalean

      Just wondered how you are Iv got the sesame oil and am about to start gargling with it tonight, hope you are well Xx

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    • Posted

       i started with sesame oil last week and will use it 3 times a week. Like in everything else we try, it probably will take a few weeks or more before we can see result..if we see result.   i like the taste of sesame it leaves in my mouth so it is a good thing.  I also started with aloe vera juice, about 1-2oz with a little water.  Same thing here, patience to see if it helps, they say aloe vera is great for immune system+ so whether it helps lichen planus or not, it won't kill me by drinking about 4-6oz a day.  I'll keep u posted.  I see my obgyn end of august and will get more info about hpv and its connection to lichen planus..have a beautiful day Karen🌻
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    • Posted

      Thankyou kalean

      Think I will buy the aloe Vera too it's worth a go definitely, I have an awful taste in my mouth drives me mad also my body hair is really sparse now is yours kalean ? When I asked the specialist about hpv she wouldn't agree to it I'm sure it's just that they don't want to stress us out more, anyway let me know what yours say!!!!! Do you have a smear every year think it's different over there ?

      It's a place Iv never been keep promising myself a few little breaks just can't afford at the moment till my divorce and financial things are sorted it's taking forever Xx

      You take care and have a lovely day 🙋💐

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    • Posted

      Hi kalean

      Just wondering how you are and if the sesame oil is working for you would be good for a catch up Xx

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    • Posted

      Hi karen - i did the mouth rinses with sesame oil for about a week and gave up, did not see any change😋.  Maybe it was too soon to stop, usually you need to give it a good 2 weeks or more to see some results, if any.  i should resume the rinses and be more patient, thanks for the reminder.

      i saw my obgyn monday, she thinks that my LP downthere is actually atrophic vaginatis..i did not what that one was either so i had to google, anyway, i think she is wrong but i did not tell her.  She gave me some estrogen cream (Estrace) to apply inside & out the area, but after reading the possible side effects and posts from other people, i am not sure i will use the cream inside (with a tube that u push and the cream is released).She wants to see me again in a month to evaluate.  I'll keep you posted.

       

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    • Posted

      Hi Karen I have OLP or Mucosal LP,

      You are not alone, I too keep looking into my mouth as I have to clean my teeth, insides of my cheeks etc after every meal. Its very time consuming and at times I have thought of having only two meals.

      Infact I always carry a small bottle of saline, mirror, ear buds to clean the insides even when travelling.

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    • Posted

      Thankyou for replying rajeshkiwi, how old are you how long have you had it, i am 57 and was diagnosed aboutv14 years ago by my dentist although I didn't know then that I had it just the last few years it's started to bother me, around that same time I had an abnormal smear test and had colposcopy and had yearly checks after that so I am certain these are related.

      What about you X

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    • Posted

      Hi Karen,

      I have had OLP for about 3 years + now. I am 43 now. 

      I had gone to the dentist to get my teeth cleaned and polished and he adviced me to meet an Oral Pathologist as he doubted I had OLP like white striations. The Oral Pathologist confirmed the diagnosis. She believed it was due to stress in my work or life that must have caused it. I did have a v stressful life event in the preceding year and though it to be true.

      My insensitivity to spicy food started after I started applying a steroid creme. Since then it has just been a journey through the depths of OLP.

      Mentally I have stabiised and waiting for the OLP to go into remission.

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    • Posted

      I feel so bad for you. Iwent through similar situation a long time ago with my 1st husband. You will be ok, it just takes a good while to get through it....smile
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    • Posted

      you should use the Estrace , really, I used it once a day for 14 days then twice a week. It took a couple of months but it was life saving. So really give it a chance I have OLP and was thinking the horrible burning and pain below was it too . But the doc was right atrophic vaginatis was accurate
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