Can covid vaccines or COVID infection trigger scarring alopecia?
Are COVID vaccines or infection responsible for scarring alopecia?
I’ve selected this question below for this week’s question of the week. It allows us to review some concepts in the connection between scarring alopecia and vaccines.
Question
I had a COVID vaccine in 2021 and developed frontal fibrosing alopecia in 2022. Do you think there is a connection? I hear you mentioning a connection between vaccines and alopecia areata for some patients. What about those of us with scarring alopecia? What’s the current thinking about all these issues?
Answer
Thanks for the great question. Yes, there has been quite a lot of questions coming in related to this subject. It’s a tricky question for reasons we will see in just a moment. I would imagine there are 5000-6000 patients with frontal fibrosing alopecia in the United States that have this very same question - their FFA started sometime in the last 1-3 years and they are wondering about the role of the vaccine or COVID infection. For most of them, it’s unlikely the vaccine or COVID was the cause - but certainly it could have flared the disease or worsened the disease for many. It’s possible that for a very small proportion it was the main trigger of the disease - that’s tougher to prove as we’ll see in a moment.
As we begin to talk about this subject, we need to distinguish two things. These distinctions are often completely forgotten about so it’s worth going over them. There is a major difference between COVID vaccines or COVID infection “flaring” or “worsening” existing scarring alopecia and COVID vaccines or COVID infection actually causing new onset (first time) scarring alopecia.
It’s fairly common for vaccines or COVID to flare existing scarring alopecia.
It’s felt to be fairly rare for vaccines or COVID infection to cause brand new scarring alopecia.
We’ll come back to this in a moment.
When a person says to me “do you think COVID vaccines can cause new onset scarring alopecia?” my responses is “I think it’s possible although I think it’s fairly uncommon and we don’t have alot of good evidence from any studies to really support this. But yes, I think it’s possible. So the answer is yes.
When a person says to me “do you think COVID vaccines can worsen someone’s existing scarring alopecia?” my responses is “I know that is possible and it happens a fair amount of the time and we’re starting to get some evidence that actually support this. So the answer is yes.
But even though the answers are yes, the odds or chances are very different. One is fairly likely and one is not so likely.
So the distinction between vaccines causing scarring alopecia and vaccines flaring or worsening scarring alopecia is very different. These distinctions are blurred by people.
Many people ask me on social media or on various public webinars if I think COVID infections or COVID vaccines cause their scarring alopecia. The reality is I can never say with 100% certainty but I can give it an approximate ranking from ‘very likely’ all the way down to very unlikely”
Let’s review the diagram below.
Consider the hypothetical patient listed as number 1 in the diagram below. She developed FFA in 2022 and had the COVID vaccine in 2021. She’s 200% convinced there is a link between her getting a vaccine and her developing FFA. Well, I can’t be 100% sure there is not a link but let me say that for this hypothetical patient I’m certainly not giving it very high odds there is a link. You see, she started losing eyebrows in 2015 and when you really sit down and review her story you realize that she probably had been misdiagnosed for 6 years or 7 years. Her FFA started a long time ago! Finally, when she got a COVID vaccine her FFA flared and someone finally made the diagnosis in 2022. Was the vaccine the cause? No way. It’s pretty common for FFA to be misdiagnosed for years and years and years. The year of a person’as diagnosis is not usually the year a person’s disease started.
And so you can go through some of the examples below. I hear stories like this every single day of my life. What it takes is some good listening to figure out - were there really any signs of scarring alopecia before the vaccine? Now, that’s not up to the patient to decide as some of the scarring alopecias are completely asymptomatic and completely hidden in the early stages. So, just because a patient says they did not have evidence of a scarring alopecia does not mean they did not have evidence of a scarring alopecia!
Scarring Alopecias Occurred Before COVID and Will Continue to Occur After COVID
Every year in the United States, there are probably 1000-2000 new cases of frontal fibrosing alopecia that get diagnosed. So that means there is going to be lots and lots of patients who get COVID infection or get a vaccine and then come to learn they have scarring alopecia. Was COVID or the vaccine responsible for their new diagnosis?
For many, it’s not related at all. But for a small number, I would estimate yes - that probably it is related in some way. For many, though - I must emphasize that it’s probably not related at all. People just develop this condition regardless of whether COVID enters the picture or not
Researchers are interested in looking at whether FFA and LPP and scarring alopecia are increasing in the pandemic or not. That’s tricky to properly study because FFA is increasing anyways year by year. So if we find that rates of FFA are higher in 2023 than 2019 (before the pandemic), that does not mean the increasing rates are due to COVID 19 or COVID vaccines. Rates of FFA are increasing and increasing and increasing long before COVID entered the picture. We expect rates of FFA to keep going up and up and up in the forseeable future (of course nobody knows why that is) !!
What will be more telling is if rates of scarring alopecia appear to sky rocket in the post COVID era or if patients with 5 or 6 vaccines are more likely to get FFA than patients with 0 or 1 vaccinations…. Or if patients with 7 COVID infections are more likely to develop scarring alopecia than those who have 1 infection. Now we’re getting somewhere!
Conclusion
Thanks for the question. I have no clue if there is a connection between your vaccine and FFA for YOU specifically as I don’t have enough information from you about your story. I need lots and lots of information !!!! I’d need to review many many things in your life and health from 1995-2022. The more and more answers from the following list below that are “yes” then I’m slowly getting less and less likely to believe your vaccine caused your FFA. (Now it could have flared it but actual causation is different). However, the fewer and fewer items on the list below that are yes, then I’m more and more likely to feel a link is possible. Again we expect 2000 people in the United States to develop FFA this year anyways so establishing a causal link is not always easy. You need to also factor in other infections as triggers (COVID, etc etc), stress, medications that may cause FFA, etc etc.
Before the year 2021…
a) did you have any loss of eyebrow hair?
b) did you have any loss of scalp hair?
c) did you have scalp itching or burning?
d) did you have loss of body hair, arm hair, pubic hair, underarm hair?
e) were you diagnosed with Hashitmoto’s thyroiditis?
f) were you diagnosed with rosacea?
g) did you feel your hairline was changing?
h) was your scalp sore?
i) did you have early menopause?
j) did you have a diagnosis of lichen sclerosus?
h) did you have skin lichen planus?
i) did you have oral lichen planus?