@sue225 I know, this should be the least of my worries, losing my eyesight and hearing should be. I didn't realize the lichen does that, too. Is there no end to the lichen destruction of anyone's body?
@bustrbrwn22 Are you saying that lichen sclerosis ruined your eyesight and hearing. Did the inflammation get so out of control that doctors were unable to help?
I have had LS of the groin for over 20 years and used many topical steroids and have topped using any steriods now and only using coconut oil and emuaid sometimes. Have a lot of burningand pain and will see a new dermatologist the 27th,
Welcome to Mayo Clinic Connect, @620. It sounds like you were wanting to get a way from topical steroids but found some help from coconut oil. What are you hoping to learn on the 27th at your next dermatologist appointment?
@bustrbrwn22 Are you saying that lichen sclerosis ruined your eyesight and hearing. Did the inflammation get so out of control that doctors were unable to help?
We are fighting to save my eyesight now. My new specialist said he saw a 50% improvement since my last visit. Lichen of the eyes is very rare I know so I hope we have caught it in time after several eye drs just kind of said huh when I asked if I could have lichen in my eyes. The ear doctor wouldn’t give me the time of day so I have another appt scheduled in 2 weeks. Hopefully she’ll hear me then? It may be as simple as needing drops or a tube but all they do is check my hearing so who know. If I’m lucky to have lichen in so many places would it be inconceivable to have it in one more? The eyesight literally changed in one day and I had an emergency appt. just dry eyes I was told. Luckily I kept at it or I would be blind now.
Welcome to Mayo Clinic Connect, @620. It sounds like you were wanting to get a way from topical steroids but found some help from coconut oil. What are you hoping to learn on the 27th at your next dermatologist appointment?
@bustrbrwn22 I apologize for the delay in my response to your question above. I do not have lichen sclerosis. I moderate for this group so was asking questions to help connect @620 with other members who may have experience and could offer support.
Hello @lmgreg17 and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on lichen sclerosis with other members such as @620@bustrbrwn22 and @artist01 who have experience.
While we wait for them to join, can you share what symptoms you are experiencing as well as what you are currently doing for the symptoms?
Hello @lmgreg17 and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on lichen sclerosis with other members such as @620@bustrbrwn22 and @artist01 who have experience.
While we wait for them to join, can you share what symptoms you are experiencing as well as what you are currently doing for the symptoms?
@Imgreg17. Hello Greg. I don't really know the difference between lichen sclerosis and lichen planus but perhaps they're the same thing. I hope my comments might help you.
I was diagnosed with oral lichen planus in December, 2020 and have been seen by my general practitioner, as well as my dentist, an ENT specialist, an oral medicine specialist in another city by video call, and am currently being treated by a dermatologist. My prescriptions have included Nystatin Suspension, Protopic Ointment, Oracort (dental paste), and Clobetasol, with only moderate success. However, at present my Dermatologist wants me to try Clobetasol again by applying orally SIX times daily. The lichen planus has eased up a bit over these long, painful months and the most important improvement has been that I no longer have the extreme pain, and the larger lesions on one side of my tongue are disappearing. My dermatologist has been the best, most attentive doctor for my condition.
Good luck to you, Greg, as you search for what might work for you. Warm regards, Laurie
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@bustrbrwn22 Are you saying that lichen sclerosis ruined your eyesight and hearing. Did the inflammation get so out of control that doctors were unable to help?
Welcome to Mayo Clinic Connect, @620. It sounds like you were wanting to get a way from topical steroids but found some help from coconut oil. What are you hoping to learn on the 27th at your next dermatologist appointment?
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2 ReactionsWe are fighting to save my eyesight now. My new specialist said he saw a 50% improvement since my last visit. Lichen of the eyes is very rare I know so I hope we have caught it in time after several eye drs just kind of said huh when I asked if I could have lichen in my eyes. The ear doctor wouldn’t give me the time of day so I have another appt scheduled in 2 weeks. Hopefully she’ll hear me then? It may be as simple as needing drops or a tube but all they do is check my hearing so who know. If I’m lucky to have lichen in so many places would it be inconceivable to have it in one more? The eyesight literally changed in one day and I had an emergency appt. just dry eyes I was told. Luckily I kept at it or I would be blind now.
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1 ReactionI am in a lotof pain andmay have to go back on clobitasol.
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1 Reaction@amandajro Hi, are you in a lot of pain from some from of lichen's?
Just diagnosed with lichen sclerosis. Wonder how others handle the symptoms
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1 Reaction@bustrbrwn22 I apologize for the delay in my response to your question above. I do not have lichen sclerosis. I moderate for this group so was asking questions to help connect @620 with other members who may have experience and could offer support.
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1 ReactionHello @lmgreg17 and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on lichen sclerosis with other members such as @620 @bustrbrwn22 and @artist01 who have experience.
While we wait for them to join, can you share what symptoms you are experiencing as well as what you are currently doing for the symptoms?
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1 ReactionI am currently using a prescribed steroid cream twice a day. Still have swelling and irritation.
@Imgreg17. Hello Greg. I don't really know the difference between lichen sclerosis and lichen planus but perhaps they're the same thing. I hope my comments might help you.
I was diagnosed with oral lichen planus in December, 2020 and have been seen by my general practitioner, as well as my dentist, an ENT specialist, an oral medicine specialist in another city by video call, and am currently being treated by a dermatologist. My prescriptions have included Nystatin Suspension, Protopic Ointment, Oracort (dental paste), and Clobetasol, with only moderate success. However, at present my Dermatologist wants me to try Clobetasol again by applying orally SIX times daily. The lichen planus has eased up a bit over these long, painful months and the most important improvement has been that I no longer have the extreme pain, and the larger lesions on one side of my tongue are disappearing. My dermatologist has been the best, most attentive doctor for my condition.
Good luck to you, Greg, as you search for what might work for you. Warm regards, Laurie
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Helpful -
Hug
3 Reactions