Can COVID 19 Vaccinations Cause Hair loss or Worsen Symptoms in Patients with Scarring Alopecia ?

Can COVID Vaccines Flare Scarring Alopecia?

COVID vaccination has had an important role in the dramatic reduction in morbidity and mortality of COVID19 worldwide. Despite their benefits, vaccines have been linked to a number of side effects, including those relevant to the hair loss specialist.  These include telogen effluvium, telogen effluvium with worsening of androgenetic alopecia, dysesthesia (scalp symptoms), and flares or new onset alopecia areata. The impact of vaccines on scarring alopecia is not clear.

Flanagan et al 2023

Authors of a very nice new study conducted a survey to evaluate the concerns of patients with scarring alopecia regarding vaccines and to evaluate if receipt of vaccines actually altered their hair loss treatment plan or their actual hair loss.    

To conduct the study, an email survey was distributed to the  5,103 members of the Cicatricial Alopecia Research Foundation (now called Scarring Alopecia Foundation) patient members in April 2021. Respondents were 18 years or older with known scarring alopecia diagnosis. The survey link was accessed by 969 members, and one third or so of these patients went on to complete surveys (317 members or 32.7%). 70 % of patients chose to ignore the survey altogether.

Participants had an average age of 60.2 years. Most were female (95.3%), white (74.4%), and had a diagnosis of LPP/FFA (74.5%) or central centrifugal cicatricial alopecia (13.9%).

What vaccines were received by patients?

94 % of participants received at least one dose of the vaccine. Pfizer (53.9%) and Moderna (39.1%) accounted for most vaccines but 3.9 % had J&J and  3.2 % had AstraZeneca

Many patients experienced the common and expected vaccination side effects including injection site tenderness, fatigue, and fever. There were 2 patients required hospitalization for vaccine reaction (0.64%)

Impacts of Vaccine on the Scalp Hair Loss or Scalp Symptoms

8 % of participants felt that the vaccine they received caused hair loss. That works out to 1 out of every 12 patients who get a vaccine felt it will cause hair loss. Of those who had hair loss, 56% felt it was mild hair loss and 44% felt it was moderate or severe hair loss. Interestingly, by the time of the survey, 36% of patients who did get hair loss after the vaccine did not feel their hair loss was back to normal. But this survey was done in April 2021 so many patients would just be a few months out from getting the vaccine.

15 % of patients felt the vaccine caused scalp symptoms.  That works out to 1 out of every 7 people who get a vaccine felt it will flare symptoms.  In 54.2 % the symptoms were mild and in 45.9% the symptoms were moderate/severe. 37.5 % of patients who did get symptoms after the vaccine felt their symptoms had not yet improved back to what they were like before the vaccine.

12 % of patients needed to have their medications adjusted due to the vaccine.

Stopping or Altering Medications before the Vaccine

15 patients (about 5% of participants) altered their treatment due to the vaccine. Specifically, 3.2% stopped or paused systemic treatment (hydroxychloroquine, methotrexate, doxycycline, or mycophenolate mofetil). We don’t know the actual number of patients who were using systemic treatment in this study to really know what percent of patients on systemic treatment this actually represents. The only thing we can conclude is that some patients altered their treatment plan due to the vaccine.  A smaller proportion (0.64%) stopped or paused topical immunomodulating treatment.

12 % of patients who noted worsening hair loss and 10.4 % who noted worsening scalp symptoms after receipt of the vaccine had altered their treatments.

Conclusions

This is a really valuable study for our field. It’s a much needed study in our field.

First, let me point out there are limitations to this study. Such limitations are, of course, part of every survey based study. Motivation to complete the study was low and clearly there is something special about the 32% who did complete the study. They could have been more likely to have side effects.  In other words, there is some degree of bias that might be present.

We don’t really know if hair loss that the patient had was truly mild, moderate or severe in this study as we rely on patient’s opinion. There are some formal criteria to evaluate that and when it comes to hair loss, it’s easy to rate one’s hair loss as worse than it is. Many studies back up that concept. Nevertheless, this data is important.

Furthermore, we really don’t know with photos of clinical examination if patients got their hair back or they just feel their got their hair back. A lot of patients would be 1-4 months out from their vaccine. It does seem that shedding cycles are pretty short lived for alot of patients.

The authors conclude that “based on our survey study results, physicians can reassure CA patients about the low risk of worsened scarring alopecia due to COVID-19 vaccination.”

I do agree with this generally speaking, but I’m not sure I share the same amount of positive feelings about things as the authors. I think there are a whole group of patients whose long term outcome we simply don’t know yet. We don’t know the long term outcome of a big proportion of patients in this study. Did everyone get their hair back?  Did symptoms resolve in everyone? It sure seems that most people resolve their issues … but we need to ensure that as a hair loss community that no patient gets left behind. Does everyone make it out ok?

I’m of the belief that vaccines show pretty good safety for most people. I’m generally of the belief that we’ve not had to say final goodbyes to as many family members, friends, colleagues as we otherwise would have because of the vaccines that were made available. That’s pretty clear. But 1 in 12 patients with scarring alopecia who roll up their sleeves to get a vaccine are going to have hair loss. That’s a surprisingly big number. I’m not sure I call that a low number. Fortunately the outcomes down the road seem good but if some patients are going to be shedding each year for 3-5 months of the year after these vaccines… what is one to do? If some of my patients spend their days intensely shedding for as many days as they spent not shedding… this can be really stressful for many.

We need long term data.

This study was just so needed in my view and I’m grateful to see this data.

When something rings the office by phone and says “I got a vaccine last month and have hair loss, doc”… what I can say to them is “You have a 50 % chance this will be mild and 50 % chance this will be moderate to severe hair loss.” That’s a high number. That does not sit well in my stomach. I’m not feeling as calm as this paper might otherwise lead to believe I should feel.

When patient’s ask me next … “Is this going to all grow back, doc?” … I can say that for most patients, it seems to but I can’t promise you yet that it’s all coming back. That’s the reality of this study.  We need long term data.

It would be so wonderful to follow up on these patients long term and this may be something that’s easy to do with this group of patients who kindly give of their time to advance science by completing these surveys.

Many thanks to the authors for this great study.

REFERENCE

Flanagan KE. COVID-19 vaccination among patients with cicatricial alopecia: patient concerns, experiences, and treatment modifications. Int J Womens Dermatol. 2023 Feb 28;9(1):e036.