Oral lichen planus in throat??

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Hello everyone! I am a 33 year old female and was recently diagnosed with oral lichen planus (confirmed with gum biopsy). My gums were very red and inflamed, with some erosions, so I started a topical steroid gel. It has improved some, but not completely. A couple of weeks ago, I developed a sore throat, which I thought was just a virus. Then my tongue got all white, so I thought maybe it was thrush from the oral steroids. Started on a two week course of fluconazole, which I am almost finished with. I have also been taking probiotics. The white tongue is gone and there are no visible signs of thrush, but the pain is still there. The pain is deep in my throat, down deeper than I can see.....it almost feels like it is near my vocal cords or the top of my esophagus. Has anyone else with OLP experienced this? My doc said that it is very uncommon to have OLP there, so he wasn't convinced that was the problem, but I don't know what else it could be. The pain is awful, especially a couple of hours after eating. I am taking omeprazole as well, but it really doesn't feel like GERD. At this point, my mouth is the least of my worries, it is mostly my throat that is bothering me. Has anyone dealt with this? Any suggestions?

 

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  • Posted

    Hi, thought I'd let you know that I was diagnosed with oesophageal LP last year.  I had a lot of trouble swallowing food and after several tests, lesions were found.  My oesophagus was about half the diameter it should have been.  I had a couple of stretches by endoscopy which for now have been successful.  Keeping my fingers crossed for the future although I might need a repeat.  I decided against medication and try to eat a clean diet and live in an environment as free of chemicals as possible to support my immune system.  My consultant told me that to have LP in the oesophagus is properly rare but, as you can see, it does happen.  Maybe you are affected slightly higher in the gullet?  Good luck and persevere.  Biopsies seem to be the only way to get a proper diagnosis.
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  • Posted

    hi - my gums are as bad as yours but so far, nothing in the throat.  This disease worries mr sick, at first i keep hoping it would just go away forever but now i am looking inside my mouth and praying that it won't get worse.  My advice to you right now for your throat is do your own research on the net or go get a second opinion and try not to worry too much about it.  You're in good company.
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  • Posted

    Hi,

    I have oral, esophageal and laryngeal LP. It is likely a fair percentage of folks who have oral LP may also have esophageal lesions. Laryngeal is exceedingly rare with 3 cases reported. That said, perhaps like esophageal it is more common and just underdiagnosed. Lichen Planus is increasingly being thought of as a systemic disease so if you have it one place you may well have it effect some other mucus membrane. I receive intravenous Rituxan every six months which keeps a lid on things :-) Before that I tried a long list of meds with no benefit and plenty side effects. I had multiple food impactions and esophageal dilatations. I was being treated for asthma until eventually they realized I had laryngeal LP. The problem is your doc is still thinking like it OLP vs Systemic LP. Get your doc to contactl Dr. David Katzka at the Mayo Clinic especially if you have difficulty swallowing. Hang in there. It gets better! :-) 

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    • Posted

      Mary what kind of doctor is treating you? My oral surgeon dxed OLP without a biopsy, Up until now it was only on the inside of one check, now it is on the other side and I see a lesion on the back of my throat
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  • Posted

    No sore throat, but i started having trouble swallowing about 3 years ago. My doc said i have gerd. Prescribed Omeprazole which hasn't done a thing for me. I really feel it has more to do with OLP than gerd. Have you found any relief yet?
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  • Posted

    It's important to get the right diagnosis and that means getting biopsies in the oesophagus.  The stretches I had have worked well and my swallowing is under control.  I've recently read that purslane, a kind of salad leaf, is beneficial but haven't tried it yet.
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  • Posted

    I had this and it was hands down the worst pain of my life. I had to go on an Oral steroid for 5 days. From time to time I get little ulcers in my throat that clear up after a few days. I remember this was before I was diagnosed and I was at my resale Doctor. She took a look at my throat and she literally jumped back when she saw he top of the ulcer in the back of my throat.
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  • Posted

    Thanks all, and sorry I'm responding so late. I honestly thought I had already replied, but must have forgotten to return. I ended up seeing an ear, nose, and throat specialist, but by the time I saw him, it had already died down, so he didn't see anything. He prescribed me "magic mouthwash" to gargle when the pain returns. I have been using it, and I guess it helps a bit. Meanwhile, my gums are always red and inflamed, it gets worse, then a litlte better, and goes back and forth constantly, but never goes away completely.I saw a dermatologist who prescribed tacrolimus ointment on my gums because the topical steroids don't really help. It helps a little, I guess, but the warnings of it causing cancer scare me so I don't like using it. I'm discouraged because I'm only 33---I am not prepared for a lifetime of dealing with this, and it seems as thought I am relatively young in comparison to many on this site, so I just wonder why I am having all of these issues. My doctor is having me see a rheumatologist to rule out other autoimmune disorders. I just don't know what else to do, and it has become an obsession. Constantly checking my gums in the mirror and paranoia that I will end up with mouth or esophageal cancer.

    Any tips for putting this terrible condition into remission? I would really love a reprieve from all of this.

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    • Posted

      I feel same as you! I'm only 34 and I feel like all the doctors I have seen hesitated to even believe my biopsy because of my age. I am terrified of cancer or losing my teeth. My dentist must get sick of me asking! I look at my mouth and just get grossed out. Thank god I am married and have amazing support. I could never imagine trying to date having this.
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    • Posted

      I know exactly how you feel. Trying to come up with money for a biopsy now my OS won't do it unless paid in advance

       

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  • Posted

    Yes 33 is young for this crazy disorder but it is not uncommon, i see many young(er) people on other forums with LP.  I have it on my gums, on the sides of my mouth and thongue, and also the vaginal version of it.  It is like you say, it flares up then it is almost normal for a while and then it is back again.  I guess it probably has to do with what foods we eat.  At first, I was extremely careful about what went in my mouth, avoiding spicy food, sugar and more..and gradually I returned to my old regular food habits, it was after I did not really see improvement with the restrictions.  That is where I am now.  The reason I logged onto this forum again today is because of the throat topic, the last few days I am experiencing very scratchy throat and I am not sure what it is, i also sneeze and have stuffy nose, I am using saline nasal spray to clear, so I am hoping it is just a head cold or something like that.  But the thought that it could also be LP is always on my mind.  I have no problem swallowing and the throat does not hurt, it is only the scratchy feeling once in a while.   Anyway, thank you all for listening.  It is good to know we have company. 😊
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  • Posted

    Hi DMD3443, i was having a checkup wit my GPas my mouth has  flared up again and i was pressing him about somethin to give me some relief as Steriods ect has done nothing much and my OLP has started in my throath now , so i was saying to him that there is another Medication tha massivly helps autoimmune conditions including OLP and Bechts and it is LDN Low Dose Naltrexone so he is now having my case looked at to see if i am suitable, just Google LDN Low Dose Naltrexone and you can see that it does work, so hope it is ok for me to take as i have had Mitral Valve replaced 8 yrs ago and i am on Warfrin....keep trying...

     

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    • Posted

      Hi Patrick,

      thanks for the info.  I ave been saving all the meds name for in case I will need to discuss it with my doctor.  I am not under any medications for OLP at the moment, the periodontist I saw a couple of months ago treated  the disease in a very casual way and said to contact him if I ever feel the need for meds or rinses etc..so for now I am just waiting and hoping the disease does not get worse.  Good luck to you.  Keep smiling😊

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    • Posted

      Thank you Patrick, I will definitely look into that med and see if it might be an option for me. If you end up using it, I would love to hear how it works for you.
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    • Posted

      that was my plan wait and see, no treatment, now it's way worse on both sides of my mouth , erosive on one side

       

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