I was diagnosed with Esophageal Lichen Planus in 2014. By the time I got my diagnosis 6 years after my symptoms started, I had lost over 100 lbs and was throwing up every other meal. I now have an endoscopy with dilation done every 4 months to enable me to eat without choking. To date, I have had 35 such endoscopies. I am 72 years old and anticipate that I will have to do this unless/until my body no longer tolerates them. I would love to hear from other folks with the same diagnosis.
I also have Esophageal Lichen Planus. I'm 63yrs
old. I was recently diagnosed with it by a gastroenterologist! I had scopes and biopsies done throughout my intestinal system. I have lost 30lbs. in the past few months. The constant inflammation and pain in my mouth makes eating tough. I am using Marijuana in the evenings which helps my mouth and increases my appetite so I can eat a little bit. I live in Wa. state where it's legal.
I also have Esophageal Lichen Planus. I'm 63yrs
old. I was recently diagnosed with it by a gastroenterologist! I had scopes and biopsies done throughout my intestinal system. I have lost 30lbs. in the past few months. The constant inflammation and pain in my mouth makes eating tough. I am using Marijuana in the evenings which helps my mouth and increases my appetite so I can eat a little bit. I live in Wa. state where it's legal.
It sounds like you have lichen planus in your mouth as well as your esophagus. I am so sorry, it sounds painful and unpleasant. I have it just in my esophagus and on my left calf. I too lost weight - over 100 lbs before it was diagnosed. I was heavy to start with so I was lucky that the weight loss didn't become a health issue. I too have used MJ to help me eat - specifically, CBD oil which goes under my tongue. It does seem to help!
It sounds like you have lichen planus in your mouth as well as your esophagus. I am so sorry, it sounds painful and unpleasant. I have it just in my esophagus and on my left calf. I too lost weight - over 100 lbs before it was diagnosed. I was heavy to start with so I was lucky that the weight loss didn't become a health issue. I too have used MJ to help me eat - specifically, CBD oil which goes under my tongue. It does seem to help!
The number of times you have had your esophagus stretched is truly unbelievable! I'm so sorry! At what point do you have to have your esophagus stretched? I can't afford to lose more than ten more pounds! I have Lichen Planus in my esophagus, I lost a finger nail and I have it on my lower leg.
The number of times you have had your esophagus stretched is truly unbelievable! I'm so sorry! At what point do you have to have your esophagus stretched? I can't afford to lose more than ten more pounds! I have Lichen Planus in my esophagus, I lost a finger nail and I have it on my lower leg.
I routinely have my esophagus stretched every 4 months now. I have a great GI doctor who is willing to do it as soon as I start having trouble eating. I had an open wound on my left calf for 12 years that wouldn't heal - and my doctors tried every cream/potion/ointment/lotion/treatment known to man. What finally worked was acupuncture. I was lucky, my health plan paid for the acupuncture.
I was diagnosed with Esophageal Lichen Planus in 2014. By the time I got my diagnosis 6 years after my symptoms started, I had lost over 100 lbs and was throwing up every other meal. I now have an endoscopy with dilation done every 4 months to enable me to eat without choking. To date, I have had 35 such endoscopies. I am 72 years old and anticipate that I will have to do this unless/until my body no longer tolerates them. I would love to hear from other folks with the same diagnosis.
Same here! I have had approx the same number of dilations and now have them every 3 months; hopefully will keep moving the dates up as long as the blockage keeps improving. I have lp in quite a few other parts of my body.
I am about to have a bronchoscopy to see if lp is in my "airway" as an anesthesiologist indicated that might be the case. Anyone else with this problem?
Am also seeing an ophthalmologist in a couple of days as it has been in/on my eyelids for a while, but may now be in my eye(s).
Heard the same. It took me years to be diagnosed but now I have done three dialations and also had biopsies taken from the esophagus confirming LP. Will see a gastro specialist next week for possible medication as well.
Becky, Volunteer Mentor | @becsbuddy | Mar 4, 2023
@daisy46. And @snowfire How difficult for you! What changes have you had to make in your diet so that you can get nutrition? I can understand the weight loss before you got treatment, but are you still losing weight? I’m so sorry all this has happened to you. You know, you don’t sound bitter or angry, so that gives hope to others-thank you. How do you stay positive?
@daisy46. And @snowfire How difficult for you! What changes have you had to make in your diet so that you can get nutrition? I can understand the weight loss before you got treatment, but are you still losing weight? I’m so sorry all this has happened to you. You know, you don’t sound bitter or angry, so that gives hope to others-thank you. How do you stay positive?
I haven't lost any weight. Nor have I made huge adjustments to my diet. It's rare to find a dr. with experience of elp and while I' may be the only patient they have with this issue, I am very fortunate that they listen! I also have lp in multiple unusual areas.
Same here! I have had approx the same number of dilations and now have them every 3 months; hopefully will keep moving the dates up as long as the blockage keeps improving. I have lp in quite a few other parts of my body.
We are kindred spirits, daisy46. I'm glad you found a doctor that will dilate you as needed - it makes all the difference to have a sympathetic medical team. You might try acupuncture for the other LP areas if possible. It worked well for clearing up my leg wound.
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I also have Esophageal Lichen Planus. I'm 63yrs
old. I was recently diagnosed with it by a gastroenterologist! I had scopes and biopsies done throughout my intestinal system. I have lost 30lbs. in the past few months. The constant inflammation and pain in my mouth makes eating tough. I am using Marijuana in the evenings which helps my mouth and increases my appetite so I can eat a little bit. I live in Wa. state where it's legal.
-
Like -
Helpful -
Hug
4 ReactionsIt sounds like you have lichen planus in your mouth as well as your esophagus. I am so sorry, it sounds painful and unpleasant. I have it just in my esophagus and on my left calf. I too lost weight - over 100 lbs before it was diagnosed. I was heavy to start with so I was lucky that the weight loss didn't become a health issue. I too have used MJ to help me eat - specifically, CBD oil which goes under my tongue. It does seem to help!
-
Like -
Helpful -
Hug
2 ReactionsThe number of times you have had your esophagus stretched is truly unbelievable! I'm so sorry! At what point do you have to have your esophagus stretched? I can't afford to lose more than ten more pounds! I have Lichen Planus in my esophagus, I lost a finger nail and I have it on my lower leg.
I routinely have my esophagus stretched every 4 months now. I have a great GI doctor who is willing to do it as soon as I start having trouble eating. I had an open wound on my left calf for 12 years that wouldn't heal - and my doctors tried every cream/potion/ointment/lotion/treatment known to man. What finally worked was acupuncture. I was lucky, my health plan paid for the acupuncture.
-
Like -
Helpful -
Hug
1 ReactionSame here! I have had approx the same number of dilations and now have them every 3 months; hopefully will keep moving the dates up as long as the blockage keeps improving. I have lp in quite a few other parts of my body.
-
Like -
Helpful -
Hug
1 ReactionI am about to have a bronchoscopy to see if lp is in my "airway" as an anesthesiologist indicated that might be the case. Anyone else with this problem?
Am also seeing an ophthalmologist in a couple of days as it has been in/on my eyelids for a while, but may now be in my eye(s).
Anyone have this?
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Helpful -
Hug
2 ReactionsRegular dilations have worked really well for me and I haven't needed any other medications. I do take pantaprazole twice a day for reflux.
@daisy46. And @snowfire How difficult for you! What changes have you had to make in your diet so that you can get nutrition? I can understand the weight loss before you got treatment, but are you still losing weight? I’m so sorry all this has happened to you. You know, you don’t sound bitter or angry, so that gives hope to others-thank you. How do you stay positive?
I haven't lost any weight. Nor have I made huge adjustments to my diet. It's rare to find a dr. with experience of elp and while I' may be the only patient they have with this issue, I am very fortunate that they listen! I also have lp in multiple unusual areas.
-
Like -
Helpful -
Hug
1 ReactionWe are kindred spirits, daisy46. I'm glad you found a doctor that will dilate you as needed - it makes all the difference to have a sympathetic medical team. You might try acupuncture for the other LP areas if possible. It worked well for clearing up my leg wound.