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
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.
@bustrbrwn22 Just thinking of you and wonder how your eyesight is. And did the ear doctor listen the second time? You certainly have had a bad time with lichen. Do you have any tips for new members who come along?
@becsbuddy Unfortunately my lichen planus has spread to the soles of my feet and palms of my hands. This is the first time I have been able to sit up in quite a while. This is in addition to my oral, eye, and skin LP. I am now on hydroxycloroquine and may be on cellsept soon. I started having seizures every night if I fell asleep for more than a minute, literally. Doctors, emergency rooms, etc have not been able to determine the cause. Last night I was able to sleep for almost 2 hours while still having major flares. My eyes are very painful but the LP appears to be in remission there after a high dose prednisone course that I thought I was dying going through. It was terrible. When these flares happen my vagina and anus also burn intensely although doctors say that I do not have LP there. It is a major effort to go to any doctor appointments and am practically wheel chair bound. Thank you for listening. I am not sure when I will be able to post again. I have used all the standard LP treatments clobetasol, swishes, etc. but the LP attacked my whole body and my dermatologist had not seen this type of manifestation before and was only diagnosed through a biopsy on my hands. It really sucks.
@becsbuddy Unfortunately my lichen planus has spread to the soles of my feet and palms of my hands. This is the first time I have been able to sit up in quite a while. This is in addition to my oral, eye, and skin LP. I am now on hydroxycloroquine and may be on cellsept soon. I started having seizures every night if I fell asleep for more than a minute, literally. Doctors, emergency rooms, etc have not been able to determine the cause. Last night I was able to sleep for almost 2 hours while still having major flares. My eyes are very painful but the LP appears to be in remission there after a high dose prednisone course that I thought I was dying going through. It was terrible. When these flares happen my vagina and anus also burn intensely although doctors say that I do not have LP there. It is a major effort to go to any doctor appointments and am practically wheel chair bound. Thank you for listening. I am not sure when I will be able to post again. I have used all the standard LP treatments clobetasol, swishes, etc. but the LP attacked my whole body and my dermatologist had not seen this type of manifestation before and was only diagnosed through a biopsy on my hands. It really sucks.
@bustrbrwn22 Oh my goodness, bustrbrwn, I'm so very sorry you're going through such a nightmare of pain and suffering. If only I had a magic wand... my very best to you as you travel this awful journey. Laurie ❤
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I 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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Hug
3 Reactions@bustrbrwn22 Just thinking of you and wonder how your eyesight is. And did the ear doctor listen the second time? You certainly have had a bad time with lichen. Do you have any tips for new members who come along?
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Hug
1 Reaction@becsbuddy Unfortunately my lichen planus has spread to the soles of my feet and palms of my hands. This is the first time I have been able to sit up in quite a while. This is in addition to my oral, eye, and skin LP. I am now on hydroxycloroquine and may be on cellsept soon. I started having seizures every night if I fell asleep for more than a minute, literally. Doctors, emergency rooms, etc have not been able to determine the cause. Last night I was able to sleep for almost 2 hours while still having major flares. My eyes are very painful but the LP appears to be in remission there after a high dose prednisone course that I thought I was dying going through. It was terrible. When these flares happen my vagina and anus also burn intensely although doctors say that I do not have LP there. It is a major effort to go to any doctor appointments and am practically wheel chair bound. Thank you for listening. I am not sure when I will be able to post again. I have used all the standard LP treatments clobetasol, swishes, etc. but the LP attacked my whole body and my dermatologist had not seen this type of manifestation before and was only diagnosed through a biopsy on my hands. It really sucks.
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Hug
2 Reactions@bustrbrwn22 Oh my goodness, bustrbrwn, I'm so very sorry you're going through such a nightmare of pain and suffering. If only I had a magic wand... my very best to you as you travel this awful journey. Laurie ❤
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2 Reactions