I just got the okay from my doctors to have my ELP treated with twice-yearly Rituxan infusions. My first treatment is mid-October. Is anyone else on this site being treated with Rituxan? If so, can you share your experiences?
I have been diagnosed with ELP No oral or skin problems. Any info would be greatly appreciated of anything that has helped prevent the strictures or foods to avoid or medications that have helped. Anyone see a rheumatologist? Thank you so much
I receive my first infusion on Monday! I will be happy to keep you posted on how it makes me feel and if I think it is helping. It will replace the Cellcept medication that I now take twice daily.
I have been diagnosed with ELP No oral or skin problems. Any info would be greatly appreciated of anything that has helped prevent the strictures or foods to avoid or medications that have helped. Anyone see a rheumatologist? Thank you so much
Actually, it was a rheumatologist that authorized my use of Rituxan - it is apparently used for RA most often. I will be the first patient to try it to ELP in my medical plan as far as I know. I am hoping it extends the time between endoscopies with dilation - currently, I have to have them done every 4 months. I have my first infusion on Monday 14 Oct and will be happy to post my results.
Actually, it was a rheumatologist that authorized my use of Rituxan - it is apparently used for RA most often. I will be the first patient to try it to ELP in my medical plan as far as I know. I am hoping it extends the time between endoscopies with dilation - currently, I have to have them done every 4 months. I have my first infusion on Monday 14 Oct and will be happy to post my results.
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 :/
Hi Knowjo,
I also have ELP, OLP and LP. I have strictures in my esophagus also. Things get stuck in my esophagus especially my pills in the morning. The OLP is tough to deal with. My mouth and tongue is always swollen and sore with lesions. The skin on my lower legs has lesions all over.
There isn't a specialist or doctor around here that has ever had a patient with ELP. The Gastroenterologists don't know of a physician in Seattle that has treated a patient with ELP. ( I live 90 minutes from Seattle.)
The only medications I have been prescribed is dexamethasone oral rince and a lidocaine oral rinse. I'm very frustrated!
Hi! I'm sorry you're struggling to eat! 50lbs. is a lot! Is it the pain in your mouth keeping you from eating? My mouth is raw with a few lesions that won't go away. I'm down 35lbs. I also have not accepted taking oral Dexamethasone. I was diagnosed 5 most. ago although I was having symptoms in my esophagus thinking it was gastric reflux. Which medication are you considering? I feel like my general doctor is just throwing steroids at me! She's never seen this disease before and isn't familiar with treatment! I would love to talk to you. At times I feel so alone with it. My husband tries so hard to help. He worries about me and is concerned about my weight loss. I'm 63 yrs. old and live in WA. state. I'm also interested in hearing about the the treatment you receive. ❤️
Hello! I have oral lichen planus, as well as LP on my skin and vulva. A couple of years ago I was diagnosed with dysphagia. I’ve had episodes of esophageal spasms. I take 20 mg of baclofen 3x per day for the spasms. But now, I’m also getting uncomfortable pain behind the sternum and nothing helps. I’m also experiencing blurry vision at times, teary eyes, and a sensation in my eyes as if there’s a film of something coating my eyes. I don’t know what’s happening to me. I’m just finishing up a course of prednisone, using dexamethasone rinse for the oral LP, and tacrolimus ointment for the skin, but I feel that nothing is helping and I’m just getting worse!
Hello! I have oral lichen planus, as well as LP on my skin and vulva. A couple of years ago I was diagnosed with dysphagia. I’ve had episodes of esophageal spasms. I take 20 mg of baclofen 3x per day for the spasms. But now, I’m also getting uncomfortable pain behind the sternum and nothing helps. I’m also experiencing blurry vision at times, teary eyes, and a sensation in my eyes as if there’s a film of something coating my eyes. I don’t know what’s happening to me. I’m just finishing up a course of prednisone, using dexamethasone rinse for the oral LP, and tacrolimus ointment for the skin, but I feel that nothing is helping and I’m just getting worse!
Hi, I'm sorry you're having such a difficult time with the ELP.
I have ELP, OLP and LP on my skin. I was diagnosed by a Gastroenterologist a couple of years ago.
He is a wonderful doctor!
I have had my esophagus stretched three times in the past year . The bands that are around the esophagus due to the ELP cause the esophagus to close.
I have never had pain under my sternum like you. My mouth is raw and I have sores. It's often very hard to eat. I have lost a lot of weight from all of this!
ELP is extremely rare. My doctor went to a convention for gastroenterologists in hopes to talk with a doctor that has had a patient with ELP.
Unfortunately, there was not a gastro doctor attending the convention that has a patient with ELP. There were gastroenterologists attending from all over the country.
You asked about medications. I take a strong medication twice a day for refluxing and burning in my esophagus. It really helps a lot!!!! I also use oral lidocaine gel. It helps but doesn't last long. I also use the dexamethasone rinse for ten days if I need it. This medication can only be used for ten days at a time. This is important. Have not taken steroids (dexamethasone) or the other meds you have. I try to avoid dexamethasone in pill form. I haven't have not had any so far. My general doctor wanted to put me on the it. I wouldn't take it.
The Lichen Planus on my skin has been in remission for a while. I do get a few sores but nothing like it was before. The remissions don't last forever unfortunately. I hope this helps you in some way. I'm here to talk to if you need. I really feel for you! Take care ❤️
Connect
Connect
Like
Helpful
Hug
Hello ! Also have ELP and was wondering how this twice yearly medication has been working for you. Any other info would be great. Thank you
-
Like -
Helpful -
Hug
1 ReactionI have been diagnosed with ELP No oral or skin problems. Any info would be greatly appreciated of anything that has helped prevent the strictures or foods to avoid or medications that have helped. Anyone see a rheumatologist? Thank you so much
-
Like -
Helpful -
Hug
1 ReactionI receive my first infusion on Monday! I will be happy to keep you posted on how it makes me feel and if I think it is helping. It will replace the Cellcept medication that I now take twice daily.
-
Like -
Helpful -
Hug
1 ReactionActually, it was a rheumatologist that authorized my use of Rituxan - it is apparently used for RA most often. I will be the first patient to try it to ELP in my medical plan as far as I know. I am hoping it extends the time between endoscopies with dilation - currently, I have to have them done every 4 months. I have my first infusion on Monday 14 Oct and will be happy to post my results.
-
Like -
Helpful -
Hug
1 ReactionThank you and yes I would love to follow how you are doing. Best wishes to you
-
Like -
Helpful -
Hug
1 ReactionHow has the Budesonide worked for you?
-
Like -
Helpful -
Hug
1 ReactionI’m in Seattle also and have ELP and am running into the same issues as you have. Did you find anyone around here to treat you.
-
Like -
Helpful -
Hug
1 ReactionI’m so sorry you are going through this. I have ELP and would be very interested in knowing what care you get in Wa State. I’m in Seattle
-
Like -
Helpful -
Hug
1 ReactionHello! I have oral lichen planus, as well as LP on my skin and vulva. A couple of years ago I was diagnosed with dysphagia. I’ve had episodes of esophageal spasms. I take 20 mg of baclofen 3x per day for the spasms. But now, I’m also getting uncomfortable pain behind the sternum and nothing helps. I’m also experiencing blurry vision at times, teary eyes, and a sensation in my eyes as if there’s a film of something coating my eyes. I don’t know what’s happening to me. I’m just finishing up a course of prednisone, using dexamethasone rinse for the oral LP, and tacrolimus ointment for the skin, but I feel that nothing is helping and I’m just getting worse!
Hi, I'm sorry you're having such a difficult time with the ELP.
I have ELP, OLP and LP on my skin. I was diagnosed by a Gastroenterologist a couple of years ago.
He is a wonderful doctor!
I have had my esophagus stretched three times in the past year . The bands that are around the esophagus due to the ELP cause the esophagus to close.
I have never had pain under my sternum like you. My mouth is raw and I have sores. It's often very hard to eat. I have lost a lot of weight from all of this!
ELP is extremely rare. My doctor went to a convention for gastroenterologists in hopes to talk with a doctor that has had a patient with ELP.
Unfortunately, there was not a gastro doctor attending the convention that has a patient with ELP. There were gastroenterologists attending from all over the country.
You asked about medications. I take a strong medication twice a day for refluxing and burning in my esophagus. It really helps a lot!!!! I also use oral lidocaine gel. It helps but doesn't last long. I also use the dexamethasone rinse for ten days if I need it. This medication can only be used for ten days at a time. This is important. Have not taken steroids (dexamethasone) or the other meds you have. I try to avoid dexamethasone in pill form. I haven't have not had any so far. My general doctor wanted to put me on the it. I wouldn't take it.
The Lichen Planus on my skin has been in remission for a while. I do get a few sores but nothing like it was before. The remissions don't last forever unfortunately. I hope this helps you in some way. I'm here to talk to if you need. I really feel for you! Take care ❤️