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 ❤
@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.
Welcome to Connect. We are glad you found us. It's a great place to learn what other members with similar health problems are doing for treatments. We have a few discussion on Lichen sclerosis that you may wish to view:
I started having collagen powder in my coffee to help with post covid hair loss.4 months later I realized my LS has not returned. Has anyone else experienced any benefits of collagen powder?
I started having collagen powder in my coffee to help with post covid hair loss.4 months later I realized my LS has not returned. Has anyone else experienced any benefits of collagen powder?
Welcome @salby, My wife and I both use collagen powder mixed in our coffee in the morning. She likes it because it helps grow her fingernails and I started using it because mine were brittle and it has helped with mine also. I'm hoping it helps some with skin since I have skin that is easily bruised and pretty thin. Here's some info I found on benefits:
I'm not positive if i have lichen scholus. i'm waiting to get a appointment with a vulver specialist. but the gyn office i was going to it was a nurse practioner who told me i had it after she examined me. i never even heard of it before or ever really had any gyn problems prior to that but she had given me some kind of estrogen cream to insert twice a week. all it did was cause rally intense itching. when i saw her i had no symptoms whatsoever so to be told i had this was confusing and socking. soon after i ended up seeing a actual gyn causepeople were telling me i should have a biopsy to be sure. the gyn was all set to do a biopsy until she examined me and said she was almost certain i didnt have sclorus but rather simplex so i was a bit relieved. she had me use the clob. i did and my symptoms got worse. i did tell her at the time i had had a bad reaction to prednisone but she still insisted i use the steroid ointment. when my symptoms got worse and i went back in, she said maybe sclorus(i guess they cant make up their mind), or maybe stress or maybe yeast as i had had a bad yeast the month before. she had me use nystatin for a week. it didnt do anything. then she decided without seeing me(i asked and she said she saw me twice already and was no need to see me again for a couple of months) she called in a low dose steroid to use with the clob(a strong steroid) well that kept me up most of the night itching. i stopped both it occured to me on my own that i got worse because of the steroid ointment(never mind the estrogen cream) i havent been in touch with this gyn office since. i have tried eumaid and aquafor which burned me. now while i wait to see the vulver specialist i do 2 epson sitz baths a day and apply a suave aloe vera lotion. it has helped better than anything else and i will do this until i see the vulver specialist. i'm actually having allergy testing today. im not sure if they can test if im allergic to steroids but i am going to ask.
Good morning @ret18. Several things I can tell you about this disease begin with getting rid of any soaps, laundry soap included that contain dyes and perfumes. These, for me, were true irritants. Keep the area clean and most importantly dry. Also, keep in mind that steroids could thin the skin over time so ask your gynecologist to either give you a mix of topical ointments or find a doctor that specializes in this disease. I started, luckily, with an oncologist who helped me TREMENDOUSLY. Because I carried my disease around, untreated, for so long my skin became paper thin and I had constant fractures of the skin that were very painful and caused scarring. Most recently, I found that CO2 laser therapy can help and it certainly has for me. Please don't hesitate to message me. I'd be happy to help in any way I can. Perhaps I can at least point you in the right direction. Keep in mind, everyone is different and just because something works for one, doesn't necessarily mean it will work for all. ***Keep your head up and I promise you there is help out there!!***
I had my first laser treatment this week. The first of a series of 3. I’m praying that this will stop the progression of this difficult condition. I’ll be back to inform everyone of the outcome.
I had my first laser treatment this week. The first of a series of 3. I’m praying that this will stop the progression of this difficult condition. I’ll be back to inform everyone of the outcome.
Is this laser treatment called "Mona Lisa?" I was told about this at my gynecologist's office. It is very expensive. I hope it will help you. I am waiting for a different compounded cream to numb the vulva area. This will be the fourth one. Of all the health problems I have, LS is the absolute worst! It is among the several "no cause, no cure" issues I have. With all good wishes, @joybringer
I had my first laser treatment this week. The first of a series of 3. I’m praying that this will stop the progression of this difficult condition. I’ll be back to inform everyone of the outcome.
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@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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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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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@bustrbrwn22 Have you thought of looking for a new doctor? This link might have some information for you.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
You need and deserve to find answers!
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2 ReactionsI started having collagen powder in my coffee to help with post covid hair loss.4 months later I realized my LS has not returned. Has anyone else experienced any benefits of collagen powder?
Welcome @salby, My wife and I both use collagen powder mixed in our coffee in the morning. She likes it because it helps grow her fingernails and I started using it because mine were brittle and it has helped with mine also. I'm hoping it helps some with skin since I have skin that is easily bruised and pretty thin. Here's some info I found on benefits:
-- Collagen - The Nutrition Source:
https://www.hsph.harvard.edu/nutritionsource/collagen/
I'm not positive if i have lichen scholus. i'm waiting to get a appointment with a vulver specialist. but the gyn office i was going to it was a nurse practioner who told me i had it after she examined me. i never even heard of it before or ever really had any gyn problems prior to that but she had given me some kind of estrogen cream to insert twice a week. all it did was cause rally intense itching. when i saw her i had no symptoms whatsoever so to be told i had this was confusing and socking. soon after i ended up seeing a actual gyn causepeople were telling me i should have a biopsy to be sure. the gyn was all set to do a biopsy until she examined me and said she was almost certain i didnt have sclorus but rather simplex so i was a bit relieved. she had me use the clob. i did and my symptoms got worse. i did tell her at the time i had had a bad reaction to prednisone but she still insisted i use the steroid ointment. when my symptoms got worse and i went back in, she said maybe sclorus(i guess they cant make up their mind), or maybe stress or maybe yeast as i had had a bad yeast the month before. she had me use nystatin for a week. it didnt do anything. then she decided without seeing me(i asked and she said she saw me twice already and was no need to see me again for a couple of months) she called in a low dose steroid to use with the clob(a strong steroid) well that kept me up most of the night itching. i stopped both it occured to me on my own that i got worse because of the steroid ointment(never mind the estrogen cream) i havent been in touch with this gyn office since. i have tried eumaid and aquafor which burned me. now while i wait to see the vulver specialist i do 2 epson sitz baths a day and apply a suave aloe vera lotion. it has helped better than anything else and i will do this until i see the vulver specialist. i'm actually having allergy testing today. im not sure if they can test if im allergic to steroids but i am going to ask.
I had my first laser treatment this week. The first of a series of 3. I’m praying that this will stop the progression of this difficult condition. I’ll be back to inform everyone of the outcome.
-
Like -
Helpful -
Hug
1 ReactionIs this laser treatment called "Mona Lisa?" I was told about this at my gynecologist's office. It is very expensive. I hope it will help you. I am waiting for a different compounded cream to numb the vulva area. This will be the fourth one. Of all the health problems I have, LS is the absolute worst! It is among the several "no cause, no cure" issues I have. With all good wishes, @joybringer
I had three treatments. I still feel amazing after 2 years. Must still be diligent about using Bedaderm or another ointment twice a day.