Possible Oral Lichen Planus after Covid Vaccine
Posted , 16 users are following.
TL;DR : This turned out to be a long post. Here's a quick summary to save anyone time but I suggest reading all the details below for full clarity: Developed probable oral lichen planus on tongue a week after receiving first dose of Pfizer vaccine about four months ago. Found some medical papers showing a few instances of this happening. Saw PCP, dermatologist, ENT, and acupuncturist. No one knew what it was or provided answers/treatments. It has since grown in size and spread. Please see my questions at the end.
Hello all, I am new here and happy to have found this forum. It pains me to read of the long suffering so many of you have endured and my heart goes out to you all.
Let me first start by saying I am not anti-vaccine, I am not anti-science or western medicine, and I am merely speculating based on my experience so far and the information I have been able to find. My main purpose in writing this post is to find out if anyone may have had a similar experience to mine or might be able to provide any info or advice based on their varying experiences. I thank you in advance for anything you might be able to share.
I first noticed two white spots on the right side of the dorsal surface of my tongue around four months ago. They started faint and progressively got more noticeable and felt a little similar to if you burn your tongue with a hot drink. They showed up about a week or so after I got the first dose of the Pfizer Covid Vaccine. I went to a primary care doctor and while she didn't think it was concerning, she didn't know what it was and referred me to a head and neck surgeon/ENT. Soonest thing I could get was a phone appointment and it took a few weeks. In the meantime I went to a dermatologist for something else and he didn't have any answers either but told me it should just go away. Finally got on the phone with the ENT and sent him a photo and he said he didn't know what it was either but said it didn't look concerning or like cancer (my main concern) and should go away. In his notes he labeled it leukoplakia which is what I thought it was until recently even though it didn't look exactly like the pictures I've seen. I then went to my trusted acupuncturist who has cured me and my family from many ailments in the past when medical doctors couldn't, and he didn't know what it was or think it was concerning either. He thought it maybe had something to do with my stomach (typical belief of Chinese medicine is the tongue reveals clues to organ issues) and gave me a tea. The tea didn't seem to help and within the past two months since it has grown in size and spread. The two small spots have grown and sort of combined into one long lesion. And a new spot appeared on the other side of my tongue a couple weeks ago. And then the other day I decided to do a full mouth exam and noticed some bilateral white lacy patches on the insides of my cheeks. That is when I started reading more about oral lichen planus and now out of all the possibilities of what it could be this seems to be the most likely. I was researching the possible causes and the only thing that could possibly be relevant to my situation is the vaccine. It says it can be caused by chemicals, medications, and vaccines. I am a very healthy 34 year old man, don't take any medications, and very conscious of what I put in my body. No metal fillings. Got blood tests recently for hepatitis, STD's/HIV, etc. and all negative. So I started researching and found some studies showing flare ups of lichen planus in previously diagnosed people after the Pfizer vaccine, and one study showing someone who developed it for the first time after the Pfizer vaccine. Cases seem rare and not widely studied, but there are a few medical papers written which are online. And there is a reported history of it being caused by hepatitis and flu vaccines. From the papers: "Both mRNA and viral vector vaccines are shown to upregulate T-cell-mediated immunity. As oral lichen planus is a T-cell-mediated chronic inflammatory condition of unknown etiology, the inflammatory markers involved with immune response to the administration of the vaccine mirror those involved in the disease process itself."
I have an appointment with another ENT specialist next week to get a biopsy to confirm what it is. But I've done a lot of research now and think I've pretty much ruled out everything else. Luckily it only just stings a little and I am not in significant pain or discomfort. However reading some of your experiences I am concerned it may get worse. And the success of treatments seem to vary quite a bit. This past week I have started trying every natural remedy I can find and no changes yet.
So my questions are:
Has anyone else experienced anything related to or after the Covid vaccine?
Does anyone have any advice on my outlook? Is it likely to get worse, or is the fact that it's not terribly painful or bothersome after four months a good sign? Are my symptoms and timeline similar to anyone else's experience?
Thank you in advance for any help or info you can provide. Please feel free to ask me any questions as well. Happy to provide any additional clarity or support.
3 likes, 21 replies
vvig88 john51536
Posted
Hey john,
Sent you a private message. Please check.
sarel23317 john51536
Posted
John
I will be seeing my specialist next week for this. I am new to this forum. Is there a way to contact you privately?
john51536 sarel23317
Posted
Sure feel free to send me a private message here
janet56687 john51536
Posted
Hi Jon. Yes, I just went to a dental specialist today. He did a biopsy don’t have the results back yet. How can I contact you to discuss further?
john51536 janet56687
Posted
Hi Janet, you can send me a private message on here.
mary56925 john51536
Edited
hello, shortly after - receiving my 2nd dose of Moderna in feb 2021 , like within 2 weeks or so, i started getting painful blisters in my mouth along with painful abrasions along the insides of cheeks. also pain when open mouth wide. would sit at my desk at work in tears due to the pain while trying to eat. i would repeatedly get blisters. at the same time , i had also developed rash on my wrists forearms and torso. i dealt and hoped it would go away- not being the type to want take time out to see a doctor/dentist, i waited until my scheduled dental appointment in April to speak to my dentist. they immediately recognized that some thing was abnormal. my dentist had a hunch that it was oral lichen planus. I had never heard of that before, never had anything like that. she sent me to an oral surgeon who did a biopsy and sure enough i was diagnosed with lichen planus. my general practitioner, oral surgeon essentially laughed at me when i mentioned my suspicion that the covid vax triggered this auto-immune system response . they tell me it will never go away and that it is a lifelong autoimmune disease. i sill have the white lacey abrasions and pinching pain when opening jaw wide. blisters have stopped so things are improving. ive been taking turmeric w/black pepper and using lsl free toothpaste. not sure if that is helping or if its just the passage of time and the weakening of the trigger agent in my system. i may need to refuse the booster- absolutely miserable mouth pain this last year! really takes a toll. i do hope you improve!
julie90861 mary56925
Posted
Hi Mary,
I also developed oral lichen planus after pfizer vaccine booster . It is horrible 😦 Where did you buy turmeric w/black pepper and what toothpaste are you using please? I really want to try it. Thank you.
john51536 mary56925
Edited
Hi Mary,
Thank you for sharing and sorry to hear you are dealing with this. It's upsetting that doctors laughed at you when mentioning your suspicion of it being caused by the vaccine. Lichen Planus has a history of being caused by other vaccines so it's not very far-fetched. The covid vaccine is such a sensitive subject right now with a lot of politics surrounding it and I think some doctors don't want to admit there could be problems with it. My family doctor agreed the vaccine was likely the cause and sent me a study of OLP being caused by it. Anyway, I'm glad to hear you are improving a little bit. May I ask when you started noticing improvement? I got the vaccine in May so I'm wondering if there might be a certain time frame when it starts wearing off.
Also, try not to get discouraged by doctors telling you it will never go away. Your body has the ability to heal itself from anything and believing that it crucial to it happening so don't listen to them. Western medicine has limits and they also don't like to admit that. While it's likely the vaccine caused it, there could have been something else going on and it triggered this. I think I had some gut issues before this and 80% of your immune system is in your gut, so I am working on healing it. Changing my diet, taking probiotics and supplements. Also started seeing an acupuncturist and taking herbs. He says we need to heal my immune system, improve blood circulation, organs, etc. so my body can heal the LP. Western doctors only treat symptoms which is why it doesn't work for this. Gotta get to the source. I wish you the best of luck and please let's keep in touch with our progress and anything that works.
mary56925 john51536
Edited
Hello John and thank you for responding to my post. I truly appreciate the acknowledgment and validation as well as your kind words and optimism!
i would say that the bubbly blisters stopped after 8 months. i am still in some pain daily and probably drinking and diet this holiday season has not helped. thank you for the advice about healing the "gut". i am fit however i still have much to learn about proper "gut" diet and nutrition.
thanks again and take care!
julie90861
Posted
Hi Mary,
Sent you a private message. Please check
janice3412 mary56925
Posted
I had olp flare up after two of the pfzier vaccines and had to get steroid shots to clear everything up. Thanks
john51536 janice3412
Posted
Hi Janice,
Did the steroid shots clear the OLP completely? How long ago did you get them?
maureen13490 john51536
Posted
I have recently been diagnosed with Oral Lichen Planus, which I agree is very painful and makes it difficult to eat and some drinks if too hot.
Mine started last August and I ignored tit thinking it would go away. It got worse and as it was on the sides of my cheeks, gums and upper soft pallet, I contacted the Dentist. I ad a long wait to see him but when I did, he referred me straight oi hospital. When I eventually got an appointment I was then sent for a biopsy, which when came back the diagnosis was Oral lichen Planus . I was given some mouthwash tablets but as yet, they have had no effect what so ever. I have to return to the hospital in 3 months time. I was told that I was 1% of the population. That was not a lot of comfort.
It did not dawn on me until this morning that I wondered if it could be a side effect of the Pfizer jab, and I have had the booster as well. I decided to look it up and was surprised to see that it could well be right. i had my 1st jab on 14/1/21, the second on 1/4/21 and cant think how long after the booster was, but a few months after. It is interesting that others are getting it as well, after the Covid 19 vaccine. I shall be interested to see how many more people report this in.
daniel49602 john51536
Edited
I'm glad to have stumbled on this because I have been wondering for over a year now if this happened to anyone else.
I got my first Moderna shot in Jan 2021, and I noticed my first lesion a few days later. It started small and eventually grew quite large with a well-defined shape. I used a few inflamed but unaffected taste buds as sort of a goal marker to see how it was changing. ENT had no advice other than a painful biopsy which would largely just confirm the dx . It slowly began to subside, with areas in the middle becoming clear first, and after 8-9 months, it was gone.
However, a few weeks later, following a stressful event, a new lesion appeared, but it centered over the taste bud I used as a goal marker this time. The initial area is rougher but still largely clear, and this new lesion seems to be following a similar timeline and is still present.
Symptoms are mostly mild, but I'm very aware of it all the time, and it caused a lot of anxiety for several months. I only recently stopped being so preoccupied with it.
john51536 daniel49602
Edited
Hi Daniel, sorry to hear about this happening to you. It sounds like we've had pretty similar experiences. It's been 10 months now since I got the vaccine and it appeared and it is starting to get better. I've been doing a ton of natural remedies, have stuck with a pretty strict diet for the past 6 months, and for the past 2 months I have been trying Dexamethasone rinse 2 weeks on and 2 weeks off. I've also been seeing an acupuncturist and taking herbs for the past few months. It's definitely better but hasn't gone away completely. Marks on the insides of my cheeks are pretty much gone. Tongue lesions have faded a lot but still there. More like light pink discolorations now instead of white marks.
I've also started to become less preoccupied or worried about it now. I was really worried about it getting worse, never going away, and obviously the possibility of turning into cancer. But the dermatologist who prescribed me the dexamethasone said it didn't look too bad and was very unlikely to turn into cancer. Said that usually only happens when it's erosive like an open wound for long periods of time. He also said it should hopefully just go away in time. Other than that not much else you can do. I feel lucky to not have any pain at least.
I've also tried to eliminate any stress. Started valuing my health over anything else and trying not to let anything bother me. Definitely noticed how stress can directly affect this.
Wish you luck and let's keep in touch with any progress.