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 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.
Welcome @snowfire, I can't imagine how difficult that has been for you these past years having 35 endoscopies with dilation so that you can eat without choking. I'm tagging @fourof5zs, @cld120, and @kozlo52 have posted about having an endoscopy with dilation in other discussions and may have some thought or suggestions to share with you.
Have you made any changes to your lifestyle or diet to see if it makes a difference?
I take immunosuppressants twice a day and have been for years. That meant that I had to be extremely careful at the height of Covid not to catch the disease so I made lifestyle changes. A few years ago, my doctor prescribed the 6-food elimination diet to see if it made a difference - it didn't. Nothing seems to keep my esophagus open for more than 4 months. I do take omeprazole twice a day for acid reduction.
I have lichen sclerosis. If you haven’t already been told these are autoimmune conditions.
I have found that if I treat my autoimmune with high nutritional food and drinks my condition improved. It is very hard . Kale , spinach, chia seeds, flax seeds . I’ll look up the name of the functional medicine Dr I believe in .
Constant unfortunately.
I am on #2 of 3 rounds of Mona Lisa laser. It is definitely helping. This is the only treatment to put the nightmare into remission. Sadly not covered by insurance but I’d sacrifice many things to pay for this.
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.
I have lichen sclerosis. If you haven’t already been told these are autoimmune conditions.
I have found that if I treat my autoimmune with high nutritional food and drinks my condition improved. It is very hard . Kale , spinach, chia seeds, flax seeds . I’ll look up the name of the functional medicine Dr I believe in .
I recently read that oxalates are bad for li hens spinach was on the don't eat list.
I was DX with lichen sclerosis years ago by biopsy. I was unaware there were other sorts I think doctors do not join the dots on this one either.
So far sclerosis is my only official made by biopsy awaiting results if a second biopsy. I believe I had a lichen reaction to a medication. A biopsy was done on the rash a few days later I was quite ill and could not get up. After 24 or so hours in bed and rested I began researching the BP med seen what I thought wasn't rash and quit the BP med. On the learning trail learned the other areas that can have lichens and hor they present. I am gussing I have about every type there is to have.
More than that I think I have had the esauphageal one a long time and suspect my now gone sister had it too. In the early 2000s I had a gastro bleed DX with Gerd. My sister was DX with lupus had a web in her throat that needed stretching regularly...this why I think she had lichens too. My sister died if a brain bleed and I have recently been DX with a small bleed. I am wondering if lichens can affect blood vessels in the brain?????? does anybody know.
I have recently been on quest for all things lichens in doing so I read a report of an experiment where they test a large number of people previously DX with Gerd half of them actually had lichens. Interesting what can be found if you look. I will bet this is not as rare as suspected.
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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.
Welcome @snowfire, I can't imagine how difficult that has been for you these past years having 35 endoscopies with dilation so that you can eat without choking. I'm tagging @fourof5zs, @cld120, and @kozlo52 have posted about having an endoscopy with dilation in other discussions and may have some thought or suggestions to share with you.
Have you made any changes to your lifestyle or diet to see if it makes a difference?
I take immunosuppressants twice a day and have been for years. That meant that I had to be extremely careful at the height of Covid not to catch the disease so I made lifestyle changes. A few years ago, my doctor prescribed the 6-food elimination diet to see if it made a difference - it didn't. Nothing seems to keep my esophagus open for more than 4 months. I do take omeprazole twice a day for acid reduction.
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2 ReactionsI do as well. It comes and goes for me. Sometimes for months. How about you?
Constant unfortunately.
I am on #2 of 3 rounds of Mona Lisa laser. It is definitely helping. This is the only treatment to put the nightmare into remission. Sadly not covered by insurance but I’d sacrifice many things to pay for this.
Oops! I replied to wrong auto immune disease. I do feel for you. I hope you can rid it of your esophagus. Best wishes.
I have esophageal Lichen Planus. I've been told this is incredibly rare. It's tough!
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2 ReactionsHeard 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.
I recently read that oxalates are bad for li hens spinach was on the don't eat list.
I was DX with lichen sclerosis years ago by biopsy. I was unaware there were other sorts I think doctors do not join the dots on this one either.
So far sclerosis is my only official made by biopsy awaiting results if a second biopsy. I believe I had a lichen reaction to a medication. A biopsy was done on the rash a few days later I was quite ill and could not get up. After 24 or so hours in bed and rested I began researching the BP med seen what I thought wasn't rash and quit the BP med. On the learning trail learned the other areas that can have lichens and hor they present. I am gussing I have about every type there is to have.
More than that I think I have had the esauphageal one a long time and suspect my now gone sister had it too. In the early 2000s I had a gastro bleed DX with Gerd. My sister was DX with lupus had a web in her throat that needed stretching regularly...this why I think she had lichens too. My sister died if a brain bleed and I have recently been DX with a small bleed. I am wondering if lichens can affect blood vessels in the brain?????? does anybody know.
I have recently been on quest for all things lichens in doing so I read a report of an experiment where they test a large number of people previously DX with Gerd half of them actually had lichens. Interesting what can be found if you look. I will bet this is not as rare as suspected.
-
Like -
Helpful -
Hug
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