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
lori11383 john51536
Edited
Hello John,
I am brand new to the knowledge of lichen planus; however, I have had the symptoms for about a year and a half now. Your post struck me because I have held the belief that my symptoms had something to do with the Pfizer covid vaccine. It started maybe a month or so after receiving my second shot. I have not been boosted. The symptoms were minor enough that I did not see the need to see a doctor. It was my dentist that suggested I have a biopsy to rule out malignancy. Again because it just was not that bothersome and then because it took so long to get into the surgeon's, I didn't have the biopsy until close to a year after the symptoms began. Malignancy and fungus were ruled out, but I have not had a definitive diagnosis yet. The report did suggest oral lichen planus as possibility.
Unfortunately, since the biopsy, the symptoms have progressively worsened while still tolerable.
I'm so happy to find a place to connect.
julie90861 lori11383
Posted
Hi Lori,
Same thing happened to me . It gets worse. I regret getting covid vaccine .
mary36453 julie90861
Posted
I also regret getting the covid vaccine. I had 5 shots. I just had 2 biopsies diagnosed lichen planus. i have suffered about one year and half. I went to my dentist 4 times said I was biting my inside cheek. The Gastroenterologist said it was acid. Then went to my family doctor sent me to an ent. ENT did the biopsy. Then Oral surgeon. I have been on 2 prescriptions and using Aleo Vera Leaf Gel and juice. I am keeping it some what healed.
julie90861 mary36453
Posted
Hi Mary
may I ask what 2 prescriptions are you using right now please?
claire49946 john51536
Posted
I had been dealing with mouth issues and soreness for over a year. This developed after my first Moderna vaccine. I only now got diagnosed
with Lichen Planus. I am not anti-vax, am double boosted and vaccinated. However I read an NIH study about the correlation with the COVID vaccine, which preceeded my onset of symptoms (now, looking back, after diagnosis). I am treated with Clotrimazole 10 mg troche, seems to be resolving, for now. Have my second appointment with Oral Pathologist in a week. It is concerning to me to have developed an auto immune response like this, especially as my plan was to recieve a vaccine for BA-5 when it comes up in the fall. Anyone else have more information or similar situation?
Gr8shpr john51536
Posted
Two vaccines taken same day in 2017 seemed to have caused mine. However, in my case, i may have already had a low grade Lichen planus going on mildly for years. After the two-vaccine day, my condition markedly increased. I am allergic to titanium dioxide (present in everything including most toothpastes). I avoid this chemical any way I can.
Lichen planus seems to show any time my immunity is lower. But by avoiding allergens that i am aware of and diet modification I can cause it to stay mild.
I cannot predict for you the course yours will take, but the more you sre aware of these things, the more control you will have over its expression.