Thanks for looking it up! I've had ELP since 2008. I take Cellcep twice a day to suppress my immune system and I have an endoscopy with dilation every 4 months. In September, I will have my 40th endoscopy, ugh!
Thanks for looking it up! I've had ELP since 2008. I take Cellcep twice a day to suppress my immune system and I have an endoscopy with dilation every 4 months. In September, I will have my 40th endoscopy, ugh!
I have had it for many years. I have had many dilations. Strictures made it so I couldn’t swallow anything. Once I had blockage by a single kernel of corn. No medicine seemed to resolve the issue. Now I am on meds for other issues and the ELP has resolved somewhat. It now only rarely causes problems. I’m worried my Dr who treats me will retire and I’ll be stuck again with Drs who have no clue about this problem and how only a paediatric scope will work on me.
I have had it for many years. I have had many dilations. Strictures made it so I couldn’t swallow anything. Once I had blockage by a single kernel of corn. No medicine seemed to resolve the issue. Now I am on meds for other issues and the ELP has resolved somewhat. It now only rarely causes problems. I’m worried my Dr who treats me will retire and I’ll be stuck again with Drs who have no clue about this problem and how only a paediatric scope will work on me.
@lsab I can understand why potentially having your doctor retire would cause you some anxiety! Me, too! Can you possibly bring up this subject with your doctor (maybe he wants to take a long vacation and you need help while he’s gone). Ask if surgery or treatment rooms keep a log (or something like it) that lists patients who need special equipment and what the equipment is. I’m sure you can think of more things!
Whenever you have a blockage, do you go to the ER? What is the protocol when you do show up needing help?
I was diagnosed with ELP 18 months ago.
I've had my esophagus stretched twice and also biopsies done.
Do you have Lichen Planus in your mouth, skin etc...?
I have it in my mouth and skin. (It seems the LP on my skin is in remission! It's wonderful!! LoL All of
this can sure make it
difficult to eat!😕
I to, have lost a lot of weight.
Has anyone with ELP tried Low Dose Naltrexone. It is prescribed by Functional Medicine MDs? I have oral LP and am considering taking this, hoping it will help and possibly prevent ELP. Low Dose Naltrexone has a large following and is popular for many conditions, including autoimmune.
I started with OLP about 12yrs ago dx'd by a dentist. I have ulcerative. Have had two biosies. It was off and on for a few years the suddenly just stopped going away.
I have been choking on my saliva for years. I have gerd with hot burning regurgitation seemingly out of nowhere.
I fell and injured/?tore my gluteal muscle 5 months ago but cant get a dr to diagnose or even look at me. Its gotten much worse that i can barely walk even with my crutches.
I say that because my dr put me on prednisone 15mg 3xweek she says it's safe but it doesnt feel like a long term solution. I've had her for 4 years and she only looked in my mouth for the first time a couple of weeks ago. I have always felt like I get good care. Now I don't know.
I have never heard of ELP. I see my gastro next month. Will ask.
I don't have the resilience the rest of you do. I'm overwhelmed with pain even on prednisone. I want to just run away.
I have other autoimmune stuff like chronic pain CRPS, hashimotos, etc.
I started symptoms approx 5 years ago .
However only diagnosed about 15 months ago as everything was being labelled “menopause” .
I have lost 50 pounds now ,
My concerns about the medication is really that I do not know anyone else who has been diagnosed and treated for oral , vulval and oesophageal LP , and my gastroenterologist had never heard of this , and therefore I feel that it is a stab in the dark with the treatment suggested !
I think I am coming to the conclusion that I need to start this treatment and hope it has a positive impact
Hi!
I was diagnosed less than two years ago with LP, OLP & LP on my skin. It's caused two of my fingernails to come off!
I hear you about the medications!! I told my doctor, I will not take oral steroids unless my symptoms are severe! I do take medication to prevent any heartburn and reflux. This is extremely important for my esophagus. The stomach acids cause irritation and swelling in the esophagus.
The medication doesn't cause any side effects.
ELP is extremely rare! There are less than fifty patient's in the country diagnosed with it!
Like you, there's not a physician around me that have seen a patient with ELP. Recently, my gastroenterologist went to a big convention. He said, there was not a physician at the convention that has ever had a patient with ELP.
At this point, I don't have Lichen Sclerosis as you do!! I can't begin to imagine what that's like!!😫
I have learned that some types of LP can go into a remission. I've been in remission with the LP lesions on my skin, the lesions were awful! Right now it's a lot better! How long a remission can last is unknown. ( ELP causes permanent damage and a high risk for Esophageal Cancer.) I have had Esophageal biopsies and stretching twice, in the past 15 months. At times my esophagus has some paralysis causing some difficulties swallowing.
This comes and goes. Also, I have days when I feel like something is stuck in my esophagus. If it lasts a more than a day, I have to call my specialist. It's a problem swallowing and can become severe.
ELP is an autoimmune disease. It causes your immune system to attack the mucus membranes in the body. FYI...the tissue in your esophagus, mouth, and vulva are a part of the mucus membranes in the body. There is no cure for this. Only the symptoms are treated if necessary.
I have a Lidocaine mouth rinse that helps numb my mouth. It doesn't last very long. I can use it as frequently as needed. I also have a Dexamethasone oral rinse.
Dexamethasone is a steroidal medication. I swish it around and don't swallow it. This can be used occasionally for ten days at a time. Only a minute amount is absorbed into the blood.
(Steroids can cause some uncomfortable and unpleasant side effects.)
This rinse helps me after a few days of usage.
Hi!
I was diagnosed less than two years ago with LP, OLP & LP on my skin. It's caused two of my fingernails to come off!
I hear you about the medications!! I told my doctor, I will not take oral steroids unless my symptoms are severe! I do take medication to prevent any heartburn and reflux. This is extremely important for my esophagus. The stomach acids cause irritation and swelling in the esophagus.
The medication doesn't cause any side effects.
ELP is extremely rare! There are less than fifty patient's in the country diagnosed with it!
Like you, there's not a physician around me that have seen a patient with ELP. Recently, my gastroenterologist went to a big convention. He said, there was not a physician at the convention that has ever had a patient with ELP.
At this point, I don't have Lichen Sclerosis as you do!! I can't begin to imagine what that's like!!😫
I have learned that some types of LP can go into a remission. I've been in remission with the LP lesions on my skin, the lesions were awful! Right now it's a lot better! How long a remission can last is unknown. ( ELP causes permanent damage and a high risk for Esophageal Cancer.) I have had Esophageal biopsies and stretching twice, in the past 15 months. At times my esophagus has some paralysis causing some difficulties swallowing.
This comes and goes. Also, I have days when I feel like something is stuck in my esophagus. If it lasts a more than a day, I have to call my specialist. It's a problem swallowing and can become severe.
ELP is an autoimmune disease. It causes your immune system to attack the mucus membranes in the body. FYI...the tissue in your esophagus, mouth, and vulva are a part of the mucus membranes in the body. There is no cure for this. Only the symptoms are treated if necessary.
I have a Lidocaine mouth rinse that helps numb my mouth. It doesn't last very long. I can use it as frequently as needed. I also have a Dexamethasone oral rinse.
Dexamethasone is a steroidal medication. I swish it around and don't swallow it. This can be used occasionally for ten days at a time. Only a minute amount is absorbed into the blood.
(Steroids can cause some uncomfortable and unpleasant side effects.)
This rinse helps me after a few days of usage.
Thank you for your detailed response.
It is frustrating that there is so little information regarding OLP and due to the minimal cases there is a lack of knowledge and awareness throughout the medical specialist teams.
It seems a bit of trial and error as medication goes for me -
Firstly methotrexate. But no impact .
I have now been taking mycophenolate- but have so many side effects- specifically muscle fatigue and cramps. There doesn’t appear to be any positive impact on my condition.
Also taking prednisolone steroids
I have an oesophagus stretch every 4 weeks .
It is getting more frustrating as there doesn’t seem to be any improvement.
It would be good to know of any different medications that have had a more positive outcome for anyone.
Thank you
Hi
I have LP in my esophagus, tear ducts, mouth and vagina. Esophagus is dialated three times and now just got referred to get some treatment for the inflammation. Tear ducts have Jones tubes, glass tubes, now to function. Have a hard time eating and it is painful.
Hi,
I just came across your post here!
I have ELP, OLP and LP on my skin.
I was shocked to read that you have LP in your tear ducts! It sounds really tough to deal with. I can't imagine.
I was diagnosed with ELP, OLP and LP on my skin, 18 months ago. I've had my esophagus stretched twice. Thankfully they could! 🥰
I hope you are feeling better today than you were last year!
I have had it for many years. I have had many dilations. Strictures made it so I couldn’t swallow anything. Once I had blockage by a single kernel of corn. No medicine seemed to resolve the issue. Now I am on meds for other issues and the ELP has resolved somewhat. It now only rarely causes problems. I’m worried my Dr who treats me will retire and I’ll be stuck again with Drs who have no clue about this problem and how only a paediatric scope will work on me.
I advise you to talk to your doctor and recommend a younger doctor. Have your current doctor talk to him and for the younger doctor to be present at your scopes. I am bringing this up because my doctor of over 20 years passed away on me. He told me when he got ready to retire he would discuss my case with the other doctor as being a complicated case. My doctor died in his sleep. It has been two years still having doctor problems. Plus we are looking at moving so it will be more problems.
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Thanks for looking it up! I've had ELP since 2008. I take Cellcep twice a day to suppress my immune system and I have an endoscopy with dilation every 4 months. In September, I will have my 40th endoscopy, ugh!
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Helpful -
Hug
2 ReactionsSimilarly I’ve had about 40 dilations. Was taking methotrexate to lower immune system but stopped it as I didn’t like the side effects.
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1 ReactionI have had it for many years. I have had many dilations. Strictures made it so I couldn’t swallow anything. Once I had blockage by a single kernel of corn. No medicine seemed to resolve the issue. Now I am on meds for other issues and the ELP has resolved somewhat. It now only rarely causes problems. I’m worried my Dr who treats me will retire and I’ll be stuck again with Drs who have no clue about this problem and how only a paediatric scope will work on me.
-
Like -
Helpful -
Hug
1 Reaction@lsab I can understand why potentially having your doctor retire would cause you some anxiety! Me, too! Can you possibly bring up this subject with your doctor (maybe he wants to take a long vacation and you need help while he’s gone). Ask if surgery or treatment rooms keep a log (or something like it) that lists patients who need special equipment and what the equipment is. I’m sure you can think of more things!
Whenever you have a blockage, do you go to the ER? What is the protocol when you do show up needing help?
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with ELP 18 months ago.
I've had my esophagus stretched twice and also biopsies done.
Do you have Lichen Planus in your mouth, skin etc...?
I have it in my mouth and skin. (It seems the LP on my skin is in remission! It's wonderful!! LoL All of
this can sure make it
difficult to eat!😕
I to, have lost a lot of weight.
-
Like -
Helpful -
Hug
1 ReactionI started with OLP about 12yrs ago dx'd by a dentist. I have ulcerative. Have had two biosies. It was off and on for a few years the suddenly just stopped going away.
I have been choking on my saliva for years. I have gerd with hot burning regurgitation seemingly out of nowhere.
I fell and injured/?tore my gluteal muscle 5 months ago but cant get a dr to diagnose or even look at me. Its gotten much worse that i can barely walk even with my crutches.
I say that because my dr put me on prednisone 15mg 3xweek she says it's safe but it doesnt feel like a long term solution. I've had her for 4 years and she only looked in my mouth for the first time a couple of weeks ago. I have always felt like I get good care. Now I don't know.
I have never heard of ELP. I see my gastro next month. Will ask.
I don't have the resilience the rest of you do. I'm overwhelmed with pain even on prednisone. I want to just run away.
I have other autoimmune stuff like chronic pain CRPS, hashimotos, etc.
-
Like -
Helpful -
Hug
1 ReactionHi!
I was diagnosed less than two years ago with LP, OLP & LP on my skin. It's caused two of my fingernails to come off!
I hear you about the medications!! I told my doctor, I will not take oral steroids unless my symptoms are severe! I do take medication to prevent any heartburn and reflux. This is extremely important for my esophagus. The stomach acids cause irritation and swelling in the esophagus.
The medication doesn't cause any side effects.
ELP is extremely rare! There are less than fifty patient's in the country diagnosed with it!
Like you, there's not a physician around me that have seen a patient with ELP. Recently, my gastroenterologist went to a big convention. He said, there was not a physician at the convention that has ever had a patient with ELP.
At this point, I don't have Lichen Sclerosis as you do!! I can't begin to imagine what that's like!!😫
I have learned that some types of LP can go into a remission. I've been in remission with the LP lesions on my skin, the lesions were awful! Right now it's a lot better! How long a remission can last is unknown. ( ELP causes permanent damage and a high risk for Esophageal Cancer.) I have had Esophageal biopsies and stretching twice, in the past 15 months. At times my esophagus has some paralysis causing some difficulties swallowing.
This comes and goes. Also, I have days when I feel like something is stuck in my esophagus. If it lasts a more than a day, I have to call my specialist. It's a problem swallowing and can become severe.
ELP is an autoimmune disease. It causes your immune system to attack the mucus membranes in the body. FYI...the tissue in your esophagus, mouth, and vulva are a part of the mucus membranes in the body. There is no cure for this. Only the symptoms are treated if necessary.
I have a Lidocaine mouth rinse that helps numb my mouth. It doesn't last very long. I can use it as frequently as needed. I also have a Dexamethasone oral rinse.
Dexamethasone is a steroidal medication. I swish it around and don't swallow it. This can be used occasionally for ten days at a time. Only a minute amount is absorbed into the blood.
(Steroids can cause some uncomfortable and unpleasant side effects.)
This rinse helps me after a few days of usage.
I hope this information helps you!❤️
-
Like -
Helpful -
Hug
2 ReactionsThank you for your detailed response.
It is frustrating that there is so little information regarding OLP and due to the minimal cases there is a lack of knowledge and awareness throughout the medical specialist teams.
It seems a bit of trial and error as medication goes for me -
Firstly methotrexate. But no impact .
I have now been taking mycophenolate- but have so many side effects- specifically muscle fatigue and cramps. There doesn’t appear to be any positive impact on my condition.
Also taking prednisolone steroids
I have an oesophagus stretch every 4 weeks .
It is getting more frustrating as there doesn’t seem to be any improvement.
It would be good to know of any different medications that have had a more positive outcome for anyone.
Thank you
-
Like -
Helpful -
Hug
1 ReactionHi,
I just came across your post here!
I have ELP, OLP and LP on my skin.
I was shocked to read that you have LP in your tear ducts! It sounds really tough to deal with. I can't imagine.
I was diagnosed with ELP, OLP and LP on my skin, 18 months ago. I've had my esophagus stretched twice. Thankfully they could! 🥰
I hope you are feeling better today than you were last year!
-
Like -
Helpful -
Hug
1 ReactionI advise you to talk to your doctor and recommend a younger doctor. Have your current doctor talk to him and for the younger doctor to be present at your scopes. I am bringing this up because my doctor of over 20 years passed away on me. He told me when he got ready to retire he would discuss my case with the other doctor as being a complicated case. My doctor died in his sleep. It has been two years still having doctor problems. Plus we are looking at moving so it will be more problems.
-
Like -
Helpful -
Hug
1 Reaction