Haven’t gone yet but plan in 2024 to go to Mayo Rochester Dr Alexander to be treated w dilations to get to 14 mm then learn self dilation (hopefully!)
They want me to have my derm prescribe immuno supp first (cellcept his unofficial rec although i am reading others have found success w methotrexate )
Currently being seen by dr Katzka, esophageal spec at Columbia NYC
He prescribed the budesonide mixed w honey swished and swallowed. (W fluconazole intermittently)
All meds liquid form
Haven’t been able to swallow pills for some time
-Chronically 7-8 mlm :/
Hello. I recently saw Dr. Katzka in NYC. He prescribed the same: budesonide. Can you tell me how things went a Mayo's and more about Dr. Alexander. Were you happy with Dr. Katzka?
I have Esophageal Lichen Planus. I realize this disease is incredibly rare.
I realize there are less than fifty people in the country that have this.
One question I have is, if you happen to eat a couple of bites of food with pepper or spice on it, does it cause inflammation in the esophagus?
I definitely avoid spicy foods, heavy citrus etc ..
Yesterday, I had two small bites of potato with black pepper on it. I'm having problems now. It's very difficult to eat and get food down my esophagus. Food's get stuck and won't go down.
I have had to have my esophagus stretched five times now, in addition to having several biopsies.
(I also have Oral Lichen Planus and Lichen Planus on my skin)
I appreciate any feedback.
Thank you ❤️
Hi! The biggest challenge I have with ELP is the swelling in my esophagus. It feels like I have a "golf ball" stuck in my esophagus.
Food, pills etc...get lodged! Many beverages don't go down my esophagus and cause a "foam" which cups back up and cause vomiting.
Thus, I have to go into the surgery center and be put to sleep so my specialist can try to stretch my esophagus. In addition, the doctor does biopsies.
ELP can cause Esophageal cancer.
Unfortunately, the stretching is temporary. My esophagus will become swollen again and the doctor has to try and stretch it again.
This occurs every few months.
There's always a risk of causing a serious tearing my esophagus.
I do get small tears each time.
ELP causes "bands" around the esophagus.
It's like having rubber bands around it.
I absolutely can not eat any spicy foods (not even black or white pepper) because they cause swelling in my esophagus.
Hi! The biggest challenge I have with ELP is the swelling in my esophagus. It feels like I have a "golf ball" stuck in my esophagus.
Food, pills etc...get lodged! Many beverages don't go down my esophagus and cause a "foam" which cups back up and cause vomiting.
Thus, I have to go into the surgery center and be put to sleep so my specialist can try to stretch my esophagus. In addition, the doctor does biopsies.
ELP can cause Esophageal cancer.
Unfortunately, the stretching is temporary. My esophagus will become swollen again and the doctor has to try and stretch it again.
This occurs every few months.
There's always a risk of causing a serious tearing my esophagus.
I do get small tears each time.
ELP causes "bands" around the esophagus.
It's like having rubber bands around it.
I absolutely can not eat any spicy foods (not even black or white pepper) because they cause swelling in my esophagus.
Wow, I have oral lichen planus. I have had issues with my esophagus which has led to having to have it stretched once. I see my specialist once per year but I have never been told that I have elp. I assume that it was diagnosed by biopsy. I use Clobetasol gel on my gums 3x per week.
I really like my doctor at Duke and the team that works with him. I couldn't care less about eating because it's so uncomfortable on so many levels. The scleroderma is bad enough with all the GI problems it has cause and to add this ELP to it is just another slap in the face. I'm not going to give up or give in. I'm a fighter. And yes, my GI doctor has already talked about the esophagus stretching. So I wait for their plan once they put all the pieces together. Hoping to take my Humira Friday. It does make me feel better. Been of of it for 2 weeks because of being on the Fluconazol for the thrush esophagitis. Which is better. Not gone but better.
Thank you for answering me. I'm just a little overwhelmed with all of this.
Wow, I have oral lichen planus. I have had issues with my esophagus which has led to having to have it stretched once. I see my specialist once per year but I have never been told that I have elp. I assume that it was diagnosed by biopsy. I use Clobetasol gel on my gums 3x per week.
Hi! Yes, ELP is diagnosed by doing biopsies of the esophagus.
If you are experiencing swallowing issues I highly recommend making an appointment with your Gastroenterologist.
I was having some unusual symptoms swallowing for quite a while before I was diagnosed. Honestly, I tried to ignore the symptoms I was having!
Initially I went to the doctor because I developed a severe case of yeast infection.
I was prescribed medications which didn't help. That's why I was referred to a Gastroenterologist. I had biopsies done. The Dr called me and said he and the Pathologist were working together to figure out what was wrong. Because ELP is so rare, they had never seen the abnormal tissue samples like I had. A few days later I was told I had ELP.
It was difficult to diagnose because they had never seen a case of ELP.
ELP can get worse. Mine has. ELP can definitely be precancerous. I had biopsies and stretching done in May . The biopsy results came back as precancerous.
I hope you can see the gastroenterologist sooner than later!!
ELP can cause choking!
It's frightening!!
Please be your own best advocate!! ❤️
Hi! Yes, ELP is diagnosed by doing biopsies of the esophagus.
If you are experiencing swallowing issues I highly recommend making an appointment with your Gastroenterologist.
I was having some unusual symptoms swallowing for quite a while before I was diagnosed. Honestly, I tried to ignore the symptoms I was having!
Initially I went to the doctor because I developed a severe case of yeast infection.
I was prescribed medications which didn't help. That's why I was referred to a Gastroenterologist. I had biopsies done. The Dr called me and said he and the Pathologist were working together to figure out what was wrong. Because ELP is so rare, they had never seen the abnormal tissue samples like I had. A few days later I was told I had ELP.
It was difficult to diagnose because they had never seen a case of ELP.
ELP can get worse. Mine has. ELP can definitely be precancerous. I had biopsies and stretching done in May . The biopsy results came back as precancerous.
I hope you can see the gastroenterologist sooner than later!!
ELP can cause choking!
It's frightening!!
Please be your own best advocate!! ❤️
Thank you so much! I did have biopsy’s done when I had my esophagus stretched. Nothing really was said-I think they just ruled out erythrocyte esophageal. I have definitely had difficulties swallowing recently so I believe I need to revisit the gastroenterologist and I will bring that up for sure!! Best of luck to you
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Hello. I recently saw Dr. Katzka in NYC. He prescribed the same: budesonide. Can you tell me how things went a Mayo's and more about Dr. Alexander. Were you happy with Dr. Katzka?
Thanks so much!
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Helpful -
Hug
1 ReactionI have Esophageal Lichen Planus. I realize this disease is incredibly rare.
I realize there are less than fifty people in the country that have this.
One question I have is, if you happen to eat a couple of bites of food with pepper or spice on it, does it cause inflammation in the esophagus?
I definitely avoid spicy foods, heavy citrus etc ..
Yesterday, I had two small bites of potato with black pepper on it. I'm having problems now. It's very difficult to eat and get food down my esophagus. Food's get stuck and won't go down.
I have had to have my esophagus stretched five times now, in addition to having several biopsies.
(I also have Oral Lichen Planus and Lichen Planus on my skin)
I appreciate any feedback.
Thank you ❤️
-
Like -
Helpful -
Hug
2 ReactionsHi! The biggest challenge I have with ELP is the swelling in my esophagus. It feels like I have a "golf ball" stuck in my esophagus.
Food, pills etc...get lodged! Many beverages don't go down my esophagus and cause a "foam" which cups back up and cause vomiting.
Thus, I have to go into the surgery center and be put to sleep so my specialist can try to stretch my esophagus. In addition, the doctor does biopsies.
ELP can cause Esophageal cancer.
Unfortunately, the stretching is temporary. My esophagus will become swollen again and the doctor has to try and stretch it again.
This occurs every few months.
There's always a risk of causing a serious tearing my esophagus.
I do get small tears each time.
ELP causes "bands" around the esophagus.
It's like having rubber bands around it.
I absolutely can not eat any spicy foods (not even black or white pepper) because they cause swelling in my esophagus.
-
Like -
Helpful -
Hug
3 ReactionsWow, I have oral lichen planus. I have had issues with my esophagus which has led to having to have it stretched once. I see my specialist once per year but I have never been told that I have elp. I assume that it was diagnosed by biopsy. I use Clobetasol gel on my gums 3x per week.
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Helpful -
Hug
2 ReactionsHi Paula,
I live in Cary. Which doctor at Duke do you see?
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1 ReactionHi! Yes, ELP is diagnosed by doing biopsies of the esophagus.
If you are experiencing swallowing issues I highly recommend making an appointment with your Gastroenterologist.
I was having some unusual symptoms swallowing for quite a while before I was diagnosed. Honestly, I tried to ignore the symptoms I was having!
Initially I went to the doctor because I developed a severe case of yeast infection.
I was prescribed medications which didn't help. That's why I was referred to a Gastroenterologist. I had biopsies done. The Dr called me and said he and the Pathologist were working together to figure out what was wrong. Because ELP is so rare, they had never seen the abnormal tissue samples like I had. A few days later I was told I had ELP.
It was difficult to diagnose because they had never seen a case of ELP.
ELP can get worse. Mine has. ELP can definitely be precancerous. I had biopsies and stretching done in May . The biopsy results came back as precancerous.
I hope you can see the gastroenterologist sooner than later!!
ELP can cause choking!
It's frightening!!
Please be your own best advocate!! ❤️
-
Like -
Helpful -
Hug
1 ReactionThank you so much! I did have biopsy’s done when I had my esophagus stretched. Nothing really was said-I think they just ruled out erythrocyte esophageal. I have definitely had difficulties swallowing recently so I believe I need to revisit the gastroenterologist and I will bring that up for sure!! Best of luck to you
-
Like -
Helpful -
Hug
1 Reaction