Hello
I’m new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I’ve seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I’ve. Even advised to go to the Mayo Clinic in Rochester but I’m really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks
Liked by fancyrph
What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.
LP is treatable but never cured. I use Clobetasol gel for for lichen planus sclerosis on vagina, clobetasol liquid for head. For my mouth I use Dexamethasone mixed with Nystaton. This a liquid steroid and with outbreak, rinse four times a day. Breakout at different times but using these drugs have kept LP under control and of course commitment to meds and lots of patience. I go to the only dentist in the largest city in US and past year have gone to Gynocoligist for vagina. Was going to dermatologist but was not very successful. Now I find out about escophageal LP which I did know about and am shocked. Scheduled for test on throat and hope it just needs to be stretched. Problem swollling.
Have had LP on and off 12. Hope I have been of help.
Hello. I just finished taking prednisone 40 mg daily for 4 days (for a different issue) & my mouth has cleared up for the most part for now. Have you tried that? Do you have a primary care doctor who you can discuss this with or have already discussed the issue with? Or perhaps an oral surgeon? Maybe you could take some information in hand with you on steroids & treating OLP if you see a doctor. I have suffered for going on 5 years now with erosive LP. In the beginning I lost 30 lbs because I couldn’t eat much. Someone mentioned a few weeks ago on the post about calcium helping them so I’m currently trying that only because I remember last year starting on calcium & improving- but I attributed it to a soup/juice cleanse, chiropractor, etc. Looking back now, I see it could have possibly been the calcium. I have started back on calcium & am hoping this is part of an answer. But a large dose of steroids has helped me tremendously. It took this big dose for 4 days because I was on prednisone 2.5 mg daily for a year & it didn’t do anything. Neither did topical steroids applied topically in mouth. Hope this helps.
I have also used an Rx compound of lidocaine & dexamethasone that helped. It was ordered by my dentist & filled at a compounding pharmacy. My primary care doctor has also ordered plain viscous lidocaine for me to use topically. I put the liquid in an oral syringe (like for kids) so I can then just put a drop or 2 on the erosive lesions.
I’m just mentioning what worked for me recently was a pulse dose of steroids. Obviously one wouldn’t want to take a pulse dose of steroids chronically because it’s a pulse dose. For me recently, a small dose of steroids didn’t work either. I’m not sure a dermatologist would be skilled or proficient in treating OLP. Especially if a biopsy on an oral cavity was needing to be done. I would only recommend an oral surgeon for that if need be. An ENT might be useful, especially if mucous membranes are involved in the nose.
Liked by Teresa, Volunteer Mentor
I have seen specialists all over the country and New Zealand. One of the best doctors I've encountered was Joanna Badger at Stanford Medical Center. Here is a link to her information -https://stanfordhealthcare.org/doctors/b/joanna-badger.html?ecid=glocalsearch-ls-google-doctor-all-JoannaBadger
Good luck. As mentioned in this discussion group frequently, clobetasol applied topically helps and dexamethasone mouth rinse helps. Steriods cause many other problems and I will not take them any longer. I'm 69, was diagnosed when I was 30.
If you're on the East Coast I highly recommend Dr.'s Mieller and Garber at the University of Maryland Dental School in Baltimore. They helped me a great deal and I have my oral lesions under control by using clobetasol creme. We had trays made, not unlike retainers, that extend onto my gums. I apply the creme, cover my teeth and gums with the trays and do this for 15 min twice a day. It works!
Hello @ibclng, welcome to Connect. There is another discussion on Connect where your post may receive more visibility and you can meet other members discussing oral lichen planus. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion. In the mean time you may want to read through the discussion and post any questions you may have.
> Groups > Autoimmune Diseases > Erosive oral lichen planus
— https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
Are you able to share anything you have already tried for treating your symptoms?
You may also want to listen to the following Medical Edge Radio episode, where Mayo Clinic Dr. Phillip Sheridan discusses a condition known as oral lichen planus — https://newsnetwork.mayoclinic.org/discussion/treating-oral-lichen-planus/
Hi @ibcing I want to join @johnbishop in welcoming you to Connect. Per his suggestion, I moved your post to this existing discussion on lichen planus so that you can connect with others with this condition.
I wanted to introduce you to fellow Connect members @jshdma and @fancyrph as they may be able to offer you support.
Back to you @ibcing, what symptoms are you experiencing right now?
Liked by John, Volunteer Mentor
@jshdma
@kymillie If supplementing with calcium were the solution to OLP, that would be a miracle. I've had numerous suggestions, none of which worked.