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 :/
Yes I've had it for a number of years. Being treated very successfully at St. Michael's Hospital in Toronto, with dilations which have progressed to being only needed every 4 months. I am able to swallow quite well now, having been blocked regularly previously with just about any foods, although I always have a sore throat.
I have LP in a number of areas and so am also being treated with methotrexate which appears to be effective except I find it hard to get over other infections when taking. Am also somewhat tire but that could be from blood pressure meds.
I consider the dilations to be magic!
Hope you have luck with yours
Yes I've had it for a number of years. Being treated very successfully at St. Michael's Hospital in Toronto, with dilations which have progressed to being only needed every 4 months. I am able to swallow quite well now, having been blocked regularly previously with just about any foods, although I always have a sore throat.
I have LP in a number of areas and so am also being treated with methotrexate which appears to be effective except I find it hard to get over other infections when taking. Am also somewhat tire but that could be from blood pressure meds.
I consider the dilations to be magic!
Hope you have luck with yours
Thank you for your response and help.
The Gastroenterologists I see wants to do dilation on my esophagus. He told me there's a risk of my esophagus tearing! It's frightening to me.
Do you know anything about the risk of tearing the esophagus?
Thanks again!
Thank you for your response and help.
The Gastroenterologists I see wants to do dilation on my esophagus. He told me there's a risk of my esophagus tearing! It's frightening to me.
Do you know anything about the risk of tearing the esophagus?
Thanks again!
I was diagnosed in 2014 with ELP. To date, I have had 37 endoscopies with dilation to enable me to eat normally. I too have them every 4 months. The doctor is required to tell you of all the possible negative outcomes but a skillful doctor isn't going to tear your esophagus. I am lucky that I see the same doctor every time and he is an expert at what he does. It took awhile to get to him (had to go thru other doctors first) but now we have a rhythm. I am 73 and still doing this. Best wishes finding the right doctor!
I finally got a diagnosis of Esophageal Lichen Planus in August 2023. I had already had 2 EGDs with biopsies after losing nearly 40 lbs due to swallowing difficulties. The local gastro group could only identify what I DIDN’T have. I was then diagnosed with vaginal lichen planus (had seen 5 previous gynecologists with no diagnosis over 3 years) after being sent to Gyno-Oncologist after abdomen CT scan showed suspicious tissues. The next month my dentist identified lichen planus at my routine cleaning.
I then began researching ELP and was pretty sure this had attacked my esophagus. I then found a doctor out of state who agreed with my suspicions, did another EGD with biopsies and confirmed ELP.
He referred to MUSC Medical University of South Carolina. This is a teaching/research hospital. I saw Gastro Group and Dermatology. I began systemic medication. Dermatologist referred to as “Big Guns. … Cyclosporine, 100 mg twice daily for 30 days”. Side effects were terrible, but showed improvement in couple of weeks. Doctor said could not take long term and would then switch to maintenance drug, Acitretin, 10 mg daily. This drug did nothing. Switched back to Cyclosporine for another 30 days with improvements, then to Acitretin 50mg daily. Again, swallowing and inflammation is increasingly worse, along with new symptoms. I am contacting doctor tomorrow.
My last EGD was four months ago at MUSC, so I’m feeling like it needs to be dilated again, as well as working toward finding a medication to manage symptoms.
Your comments and experiences have helped me so much this evening. We sure have to be our own advocate on this journey as so little is known in the general medical field about this disease.
I finally got a diagnosis of Esophageal Lichen Planus in August 2023. I had already had 2 EGDs with biopsies after losing nearly 40 lbs due to swallowing difficulties. The local gastro group could only identify what I DIDN’T have. I was then diagnosed with vaginal lichen planus (had seen 5 previous gynecologists with no diagnosis over 3 years) after being sent to Gyno-Oncologist after abdomen CT scan showed suspicious tissues. The next month my dentist identified lichen planus at my routine cleaning.
I then began researching ELP and was pretty sure this had attacked my esophagus. I then found a doctor out of state who agreed with my suspicions, did another EGD with biopsies and confirmed ELP.
He referred to MUSC Medical University of South Carolina. This is a teaching/research hospital. I saw Gastro Group and Dermatology. I began systemic medication. Dermatologist referred to as “Big Guns. … Cyclosporine, 100 mg twice daily for 30 days”. Side effects were terrible, but showed improvement in couple of weeks. Doctor said could not take long term and would then switch to maintenance drug, Acitretin, 10 mg daily. This drug did nothing. Switched back to Cyclosporine for another 30 days with improvements, then to Acitretin 50mg daily. Again, swallowing and inflammation is increasingly worse, along with new symptoms. I am contacting doctor tomorrow.
My last EGD was four months ago at MUSC, so I’m feeling like it needs to be dilated again, as well as working toward finding a medication to manage symptoms.
Your comments and experiences have helped me so much this evening. We sure have to be our own advocate on this journey as so little is known in the general medical field about this disease.
I have to have EGDs every 4 months in order to be able to eat "normally." I take CELCEP which is an immunosuppressive drug that my doctor hopes will slow down the rate of throat closure. There are no side effects but I don't know that it is really effective. Fortunately, I don't have other symptoms with the ELP. Best wishes to you!
I finally got a diagnosis of Esophageal Lichen Planus in August 2023. I had already had 2 EGDs with biopsies after losing nearly 40 lbs due to swallowing difficulties. The local gastro group could only identify what I DIDN’T have. I was then diagnosed with vaginal lichen planus (had seen 5 previous gynecologists with no diagnosis over 3 years) after being sent to Gyno-Oncologist after abdomen CT scan showed suspicious tissues. The next month my dentist identified lichen planus at my routine cleaning.
I then began researching ELP and was pretty sure this had attacked my esophagus. I then found a doctor out of state who agreed with my suspicions, did another EGD with biopsies and confirmed ELP.
He referred to MUSC Medical University of South Carolina. This is a teaching/research hospital. I saw Gastro Group and Dermatology. I began systemic medication. Dermatologist referred to as “Big Guns. … Cyclosporine, 100 mg twice daily for 30 days”. Side effects were terrible, but showed improvement in couple of weeks. Doctor said could not take long term and would then switch to maintenance drug, Acitretin, 10 mg daily. This drug did nothing. Switched back to Cyclosporine for another 30 days with improvements, then to Acitretin 50mg daily. Again, swallowing and inflammation is increasingly worse, along with new symptoms. I am contacting doctor tomorrow.
My last EGD was four months ago at MUSC, so I’m feeling like it needs to be dilated again, as well as working toward finding a medication to manage symptoms.
Your comments and experiences have helped me so much this evening. We sure have to be our own advocate on this journey as so little is known in the general medical field about this disease.
Have you tried to get an appointment at Mayo GI? They should have a specialist for this. I have been living with oral LP for nearly 6 years, with no relief. I also have very dry mouth which aggravates all dental care.
I have to have EGDs every 4 months in order to be able to eat "normally." I take CELCEP which is an immunosuppressive drug that my doctor hopes will slow down the rate of throat closure. There are no side effects but I don't know that it is really effective. Fortunately, I don't have other symptoms with the ELP. Best wishes to you!
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.
Has anyone been treated with infusions of Rituxan for ELP? I heard that the Mayo Clinic is using it on ELP patients but I have no further info. Does anyone receive this treatment or know of someone with ELP who does? Thx in advance for any info that you can provide!
Has anyone been treated with infusions of Rituxan for ELP? I heard that the Mayo Clinic is using it on ELP patients but I have no further info. Does anyone receive this treatment or know of someone with ELP who does? Thx in advance for any info that you can provide!
@snowfire I looked up answers to your question about ELP and rituxan. What I found was that it is still in the investigational stage. This article from the National Institutes of Health talks about the studies of rituxan. https://pubmed.ncbi.nlm.nih.gov/23228815/. The answer is “don’t hold your breath.”
How long have you had ELP and what is your treatment?
Connect
Connect
Like
Helpful
Hug
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 :/
Yes I've had it for a number of years. Being treated very successfully at St. Michael's Hospital in Toronto, with dilations which have progressed to being only needed every 4 months. I am able to swallow quite well now, having been blocked regularly previously with just about any foods, although I always have a sore throat.
I have LP in a number of areas and so am also being treated with methotrexate which appears to be effective except I find it hard to get over other infections when taking. Am also somewhat tire but that could be from blood pressure meds.
I consider the dilations to be magic!
Hope you have luck with yours
Thank you for your response and help.
The Gastroenterologists I see wants to do dilation on my esophagus. He told me there's a risk of my esophagus tearing! It's frightening to me.
Do you know anything about the risk of tearing the esophagus?
Thanks again!
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed in 2014 with ELP. To date, I have had 37 endoscopies with dilation to enable me to eat normally. I too have them every 4 months. The doctor is required to tell you of all the possible negative outcomes but a skillful doctor isn't going to tear your esophagus. I am lucky that I see the same doctor every time and he is an expert at what he does. It took awhile to get to him (had to go thru other doctors first) but now we have a rhythm. I am 73 and still doing this. Best wishes finding the right doctor!
-
Like -
Helpful -
Hug
1 ReactionI finally got a diagnosis of Esophageal Lichen Planus in August 2023. I had already had 2 EGDs with biopsies after losing nearly 40 lbs due to swallowing difficulties. The local gastro group could only identify what I DIDN’T have. I was then diagnosed with vaginal lichen planus (had seen 5 previous gynecologists with no diagnosis over 3 years) after being sent to Gyno-Oncologist after abdomen CT scan showed suspicious tissues. The next month my dentist identified lichen planus at my routine cleaning.
I then began researching ELP and was pretty sure this had attacked my esophagus. I then found a doctor out of state who agreed with my suspicions, did another EGD with biopsies and confirmed ELP.
He referred to MUSC Medical University of South Carolina. This is a teaching/research hospital. I saw Gastro Group and Dermatology. I began systemic medication. Dermatologist referred to as “Big Guns. … Cyclosporine, 100 mg twice daily for 30 days”. Side effects were terrible, but showed improvement in couple of weeks. Doctor said could not take long term and would then switch to maintenance drug, Acitretin, 10 mg daily. This drug did nothing. Switched back to Cyclosporine for another 30 days with improvements, then to Acitretin 50mg daily. Again, swallowing and inflammation is increasingly worse, along with new symptoms. I am contacting doctor tomorrow.
My last EGD was four months ago at MUSC, so I’m feeling like it needs to be dilated again, as well as working toward finding a medication to manage symptoms.
Your comments and experiences have helped me so much this evening. We sure have to be our own advocate on this journey as so little is known in the general medical field about this disease.
-
Like -
Helpful -
Hug
2 ReactionsI have to have EGDs every 4 months in order to be able to eat "normally." I take CELCEP which is an immunosuppressive drug that my doctor hopes will slow down the rate of throat closure. There are no side effects but I don't know that it is really effective. Fortunately, I don't have other symptoms with the ELP. Best wishes to you!
-
Like -
Helpful -
Hug
1 ReactionHave you tried to get an appointment at Mayo GI? They should have a specialist for this. I have been living with oral LP for nearly 6 years, with no relief. I also have very dry mouth which aggravates all dental care.
-
Like -
Helpful -
Hug
2 ReactionsHas 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.
-
Like -
Helpful -
Hug
2 ReactionsHas anyone been treated with infusions of Rituxan for ELP? I heard that the Mayo Clinic is using it on ELP patients but I have no further info. Does anyone receive this treatment or know of someone with ELP who does? Thx in advance for any info that you can provide!
-
Like -
Helpful -
Hug
1 Reaction@snowfire I looked up answers to your question about ELP and rituxan. What I found was that it is still in the investigational stage. This article from the National Institutes of Health talks about the studies of rituxan.
https://pubmed.ncbi.nlm.nih.gov/23228815/. The answer is “don’t hold your breath.”
How long have you had ELP and what is your treatment?
-
Like -
Helpful -
Hug
1 Reaction