Can anyone define exactly what "lichen planus" is? I have had OLP for at least 10 years and apparently it never goes away. Is OLP the beginning of ELP and other locations where it appears? My doc called it an "immune reaction." If it is a "reaction" (like an allergy?) why does it not stop when the offending element is taken away.
Hi,
I have ELP which has spread to my mouth and skin. ELP is a disease where the immune system attacks the mucus membranes in the body. ELP is an extremely rare disease with less than 40 cases in the country in the medical journals. The specialists I have seen have never had a patient with ELP. They don't even know of a specialist in Seattle just south of us. Presently there's not a cure for LP, OLP, ELP etc..
In all of the research I have done on these diseases I have not read any information on OLP leading to ELP.
I began having unusual symptoms in my esophagus before it spread to my mouth and skin. I ignored the symptoms in my esophagus
If you're concerned about possibly having ELP I suggest you see a Gastroenterologist.
Take care!❤️
Can anyone define exactly what "lichen planus" is? I have had OLP for at least 10 years and apparently it never goes away. Is OLP the beginning of ELP and other locations where it appears? My doc called it an "immune reaction." If it is a "reaction" (like an allergy?) why does it not stop when the offending element is taken away.
Thank you, Becky. Indeed I have discussed OLP with at least 6-7 doctors. All of them were unable to do anything: high level specialists in NYC and Boston. One told me they only treat it if it is "ulcerated." That is like treating cancer or other serious problems only when they get bad enough. Whatever happened to catching things early? Meanwhile it continues to get worse, made much worse by the vaccine. I guess getting worse in my case does not conform to the conventional definition. The fact is that it is making my life miserable.
@daisy46 I love your statement the you have an incredible doctor! Have they gotten your esophageal lichen planus under control? Can you tell us what the doctor has done to be incredible?
My apologies, I just saw this.
It has taken a few years but I have regular dilations which started out being every 2 weeks and now we're up to every 16 weeks which is huge! I no longer choke and while my esophagus is sore, I am in much better shape. My doctor is amazing. In addition, through the Dermatology Dept, as I have lp in a number of other areas, I have been put on methotrexate. That certainly seems to have had an impact on the severity of my symptoms.
I'll be happy to give more info if it helps anyone.
I have LP Along my spine, especially lower back, in my mouth and in my esophagus.
I can deal with all except for the esophagus, because it has caused strictures in the last 4 years . I’ve had 5 endoscopies with dilations within the last two years. Currently being treated with budesonide at night mixed with honey. Also, intermittently treated with fluconazole, which really helps w the candida (which actually causes as much discomfort as the LP) Everything in liquid form, I cannot swallow pills.
I’m trying lysine mixed with the budesonide at night. It seems to help.
I now avoid wheat and dairy bc allergic rhinitis but I think it actually helps LP.
Recently avoiding potatoes due to PSA .
I hope to learn Self Dilation technique w bougie this coming year w dr Alexander at Mayo - I don’t want to be put out all the time for endoscopies w dilations.
Also recently had covid for first time w sinus infection.
Was on Amox and paxlovid.
LP was better after that ( as well as the psoriatic arthritis so I stopped Otezla)
If anyone else has esophageal strictures due to Lichen Planus, I’d love to hear what has worked and what has not!
I have LP Along my spine, especially lower back, in my mouth and in my esophagus.
I can deal with all except for the esophagus, because it has caused strictures in the last 4 years . I’ve had 5 endoscopies with dilations within the last two years. Currently being treated with budesonide at night mixed with honey. Also, intermittently treated with fluconazole, which really helps w the candida (which actually causes as much discomfort as the LP) Everything in liquid form, I cannot swallow pills.
I’m trying lysine mixed with the budesonide at night. It seems to help.
I now avoid wheat and dairy bc allergic rhinitis but I think it actually helps LP.
Recently avoiding potatoes due to PSA .
I hope to learn Self Dilation technique w bougie this coming year w dr Alexander at Mayo - I don’t want to be put out all the time for endoscopies w dilations.
Also recently had covid for first time w sinus infection.
Was on Amox and paxlovid.
LP was better after that ( as well as the psoriatic arthritis so I stopped Otezla)
If anyone else has esophageal strictures due to Lichen Planus, I’d love to hear what has worked and what has not!
Hi Knowjo,
I also have ELP, OLP and LP. I have strictures in my esophagus also. Things get stuck in my esophagus especially my pills in the morning. The OLP is tough to deal with. My mouth and tongue is always swollen and sore with lesions. The skin on my lower legs has lesions all over.
There isn't a specialist or doctor around here that has ever had a patient with ELP. The Gastroenterologists don't know of a physician in Seattle that has treated a patient with ELP. ( I live 90 minutes from Seattle.)
The only medications I have been prescribed is dexamethasone oral rince and a lidocaine oral rinse. I'm very frustrated!
Hi Knowjo,
I also have ELP, OLP and LP. I have strictures in my esophagus also. Things get stuck in my esophagus especially my pills in the morning. The OLP is tough to deal with. My mouth and tongue is always swollen and sore with lesions. The skin on my lower legs has lesions all over.
There isn't a specialist or doctor around here that has ever had a patient with ELP. The Gastroenterologists don't know of a physician in Seattle that has treated a patient with ELP. ( I live 90 minutes from Seattle.)
The only medications I have been prescribed is dexamethasone oral rince and a lidocaine oral rinse. I'm very frustrated!
Have you had any Endoscopies with biopsies, and dilations?
I bet you have a Candida infection in your mouth due to the steroid mouthwash, so please try to get a prescription for luquid antinfungal fluconazole 10 day course. Be sure to swish it around in your mouth and pull it through your teeth,and gargle before you swallow. Candida in the mouth and esophagus can cause as much problems as Lichen Planus itself
If the Lichen Planus is severe, you may want to try to get on Immuno suppressants.
Apparently, CellCept is the one most prescribed for Lichen Planus in the esophagus.
As for skin conditions, I have found for me a cream designed for psoriasis ( which I have also ) actually works well for my Lichen Planus on the skin -better than any steroid cream I’ve been prescribed:
‘MG 217 psoriasis’ The Main Active ingredient is salicylic acid, but there are other ingredients that I think are effective as well.
Here’s hoping u can find a good Gastro that knows Lichen Planus (A lot of Gastro‘s think it’s acid reflux ) and a good dermatologist that knows about autoimmune issues!
It’s a crazy journey… i’m always being told how rare this condition is, but I bet in years to come someone will put all of this together and then Hopefully there will be a lichen planus specialist that can help us on all fronts!
Have you had any Endoscopies with biopsies, and dilations?
I bet you have a Candida infection in your mouth due to the steroid mouthwash, so please try to get a prescription for luquid antinfungal fluconazole 10 day course. Be sure to swish it around in your mouth and pull it through your teeth,and gargle before you swallow. Candida in the mouth and esophagus can cause as much problems as Lichen Planus itself
If the Lichen Planus is severe, you may want to try to get on Immuno suppressants.
Apparently, CellCept is the one most prescribed for Lichen Planus in the esophagus.
As for skin conditions, I have found for me a cream designed for psoriasis ( which I have also ) actually works well for my Lichen Planus on the skin -better than any steroid cream I’ve been prescribed:
‘MG 217 psoriasis’ The Main Active ingredient is salicylic acid, but there are other ingredients that I think are effective as well.
Here’s hoping u can find a good Gastro that knows Lichen Planus (A lot of Gastro‘s think it’s acid reflux ) and a good dermatologist that knows about autoimmune issues!
It’s a crazy journey… i’m always being told how rare this condition is, but I bet in years to come someone will put all of this together and then Hopefully there will be a lichen planus specialist that can help us on all fronts!
Thank you so much for your reply! I really appreciate it!❤️
Yes I have had esophageal endoscopy with biopsies. As a result I was diagnosed with ELP etc... The biopsies caused a lot of swelling in my esophagus.
Prior to having endoscopy I was fighting a terrible case of candida for a few months! It was so bad I couldn't eat anything!
I ended up in the hospital with critically low sodium level. It was frightening!
That's why I was referred to the Gastro doctor a year ago.
Now the gastro doctor wants to do another endoscopy for biopsies again and to likely stretch my esophagus. I'm scared because the Gastro doctor told me there's a risk my esophagus could tear.
I thank you again for responding to me! I have felt so alone with this since it is extremely rare.
Thank you so much! ❤️
Thank you so much for your reply! I really appreciate it!❤️
Yes I have had esophageal endoscopy with biopsies. As a result I was diagnosed with ELP etc... The biopsies caused a lot of swelling in my esophagus.
Prior to having endoscopy I was fighting a terrible case of candida for a few months! It was so bad I couldn't eat anything!
I ended up in the hospital with critically low sodium level. It was frightening!
That's why I was referred to the Gastro doctor a year ago.
Now the gastro doctor wants to do another endoscopy for biopsies again and to likely stretch my esophagus. I'm scared because the Gastro doctor told me there's a risk my esophagus could tear.
I thank you again for responding to me! I have felt so alone with this since it is extremely rare.
Thank you so much! ❤️
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Can anyone define exactly what "lichen planus" is? I have had OLP for at least 10 years and apparently it never goes away. Is OLP the beginning of ELP and other locations where it appears? My doc called it an "immune reaction." If it is a "reaction" (like an allergy?) why does it not stop when the offending element is taken away.
-
Like -
Helpful -
Hug
2 ReactionsHi,
I have ELP which has spread to my mouth and skin. ELP is a disease where the immune system attacks the mucus membranes in the body. ELP is an extremely rare disease with less than 40 cases in the country in the medical journals. The specialists I have seen have never had a patient with ELP. They don't even know of a specialist in Seattle just south of us. Presently there's not a cure for LP, OLP, ELP etc..
In all of the research I have done on these diseases I have not read any information on OLP leading to ELP.
I began having unusual symptoms in my esophagus before it spread to my mouth and skin. I ignored the symptoms in my esophagus
If you're concerned about possibly having ELP I suggest you see a Gastroenterologist.
Take care!❤️
-
Like -
Helpful -
Hug
3 Reactions@jshdma OLP and it’s cause and treatment are well explained in this information from
https://www.mayoclinic.org/diseases-conditions/lichen-planus/symptoms-causes/syc-20351378
Mayo Clinic. It is an autoimmune disease as the immune system attacks the skin and mucous membranes.
Have you discussed your concerns about it spreading with your doctor/
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2 ReactionsThank you, Becky. Indeed I have discussed OLP with at least 6-7 doctors. All of them were unable to do anything: high level specialists in NYC and Boston. One told me they only treat it if it is "ulcerated." That is like treating cancer or other serious problems only when they get bad enough. Whatever happened to catching things early? Meanwhile it continues to get worse, made much worse by the vaccine. I guess getting worse in my case does not conform to the conventional definition. The fact is that it is making my life miserable.
-
Like -
Helpful -
Hug
2 ReactionsMy apologies, I just saw this.
It has taken a few years but I have regular dilations which started out being every 2 weeks and now we're up to every 16 weeks which is huge! I no longer choke and while my esophagus is sore, I am in much better shape. My doctor is amazing. In addition, through the Dermatology Dept, as I have lp in a number of other areas, I have been put on methotrexate. That certainly seems to have had an impact on the severity of my symptoms.
I'll be happy to give more info if it helps anyone.
-
Like -
Helpful -
Hug
4 ReactionsI have LP Along my spine, especially lower back, in my mouth and in my esophagus.
I can deal with all except for the esophagus, because it has caused strictures in the last 4 years . I’ve had 5 endoscopies with dilations within the last two years. Currently being treated with budesonide at night mixed with honey. Also, intermittently treated with fluconazole, which really helps w the candida (which actually causes as much discomfort as the LP) Everything in liquid form, I cannot swallow pills.
I’m trying lysine mixed with the budesonide at night. It seems to help.
I now avoid wheat and dairy bc allergic rhinitis but I think it actually helps LP.
Recently avoiding potatoes due to PSA .
I hope to learn Self Dilation technique w bougie this coming year w dr Alexander at Mayo - I don’t want to be put out all the time for endoscopies w dilations.
Also recently had covid for first time w sinus infection.
Was on Amox and paxlovid.
LP was better after that ( as well as the psoriatic arthritis so I stopped Otezla)
If anyone else has esophageal strictures due to Lichen Planus, I’d love to hear what has worked and what has not!
-
Like -
Helpful -
Hug
1 ReactionHi Knowjo,
I also have ELP, OLP and LP. I have strictures in my esophagus also. Things get stuck in my esophagus especially my pills in the morning. The OLP is tough to deal with. My mouth and tongue is always swollen and sore with lesions. The skin on my lower legs has lesions all over.
There isn't a specialist or doctor around here that has ever had a patient with ELP. The Gastroenterologists don't know of a physician in Seattle that has treated a patient with ELP. ( I live 90 minutes from Seattle.)
The only medications I have been prescribed is dexamethasone oral rince and a lidocaine oral rinse. I'm very frustrated!
-
Like -
Helpful -
Hug
1 ReactionOh dear sounds very frustrating
Have you had any Endoscopies with biopsies, and dilations?
I bet you have a Candida infection in your mouth due to the steroid mouthwash, so please try to get a prescription for luquid antinfungal fluconazole 10 day course. Be sure to swish it around in your mouth and pull it through your teeth,and gargle before you swallow. Candida in the mouth and esophagus can cause as much problems as Lichen Planus itself
If the Lichen Planus is severe, you may want to try to get on Immuno suppressants.
Apparently, CellCept is the one most prescribed for Lichen Planus in the esophagus.
As for skin conditions, I have found for me a cream designed for psoriasis ( which I have also ) actually works well for my Lichen Planus on the skin -better than any steroid cream I’ve been prescribed:
‘MG 217 psoriasis’ The Main Active ingredient is salicylic acid, but there are other ingredients that I think are effective as well.
Here’s hoping u can find a good Gastro that knows Lichen Planus (A lot of Gastro‘s think it’s acid reflux ) and a good dermatologist that knows about autoimmune issues!
It’s a crazy journey… i’m always being told how rare this condition is, but I bet in years to come someone will put all of this together and then Hopefully there will be a lichen planus specialist that can help us on all fronts!
Thank you so much for your reply! I really appreciate it!❤️
Yes I have had esophageal endoscopy with biopsies. As a result I was diagnosed with ELP etc... The biopsies caused a lot of swelling in my esophagus.
Prior to having endoscopy I was fighting a terrible case of candida for a few months! It was so bad I couldn't eat anything!
I ended up in the hospital with critically low sodium level. It was frightening!
That's why I was referred to the Gastro doctor a year ago.
Now the gastro doctor wants to do another endoscopy for biopsies again and to likely stretch my esophagus. I'm scared because the Gastro doctor told me there's a risk my esophagus could tear.
I thank you again for responding to me! I have felt so alone with this since it is extremely rare.
Thank you so much! ❤️
-
Like -
Helpful -
Hug
1 ReactionMay I ask which Mayo clinic you go to?