Scarring alopecia (also called cicatricial alopecia) is a type of hair loss whereby the affected patient develops permanent areas of hair loss. This is usually on the scalp but can include the eyebrows, eyelashes, beard and body hair. There are well over 50 types of scarring alopecia. However, the most common scarring alopecia’s can be summarized in a short list. These include lichen planopilaris (LPP), frontal fibrosing alopecia (FFA), central centrifugal cicatricial alopecia (CCCA), discoid lupus (DLE), and dissecting cellulitis (DSC). Below is a summary of the most commonly questions asked regarding scarring alopecia’s.
Is my diagnosis correct?
Many patients with scarring alopecia remain unsure if they have the right diagnosis. Some seek a second opinion from another physician (or third opinion). Determining the right diagnosis is absolutely essential. If one is not sure if the first diagnosis they were given is correct, they may consider getting a second opinion from a dermatologist or from a board-certified hair loss specialist.
Do I need a scalp biopsy?
Dermatologists and hair loss physicians may have different views as to whether every patient with potential scarring alopecia needs a scalp biopsy or not. These views fall in three main categories:
1) There are some hair loss centers/clinics/physicians whereby every patient with hair loss (scarring or non-scarring) gets a biopsy. Period.
2) There are some physicians who perform a scalp biopsy in every patient with scarring alopecia.
3) There are some physicians who perform a biopsy if the diagnosis is not certain or there exists ambiguity in the diagnosis.
The decision on whether a patient needs a biopsy comes during the final steps of a typical patient evaluation. Consideration is taken after an in-depth medical history and history of the hair loss, scalp examination and blood tests. If the diagnosis is clear and there simply can’t be another diagnosis possible, biopsy is not necessary. If, however, there is any ambiguity then a biopsy to confirm diagnosis can be performed. Scalp biopsy may be performed in some patients with what appears to be frontal fibrosing alopecia to rule out other conditions such as cutaneous lupus, discoid lupus, lymphomas, various infiltrative conditions, including some rare cancers.
I had a biopsy already, but it was said to be ‘inconclusive.’ Do I need another biopsy?
This scenario is not so uncommon. It’s not uncommon for a biopsy to return inconclusive. However, whether or not a patient needs another biopsy depends on a number of factors. Including their history, examining their scalp and reviewing their blood test. If the diagnosis is clear, a repeat biopsy is not recommended.
However, if there is any uncertainly then it is recommended that a repeat biopsy be done.
What treatment should I start?
The treatments that are available will depend on the diagnosis and generally include topical, oral and injection-based treatments. Some physicians start with topical treatments and considering adding steroid injections or pills to the overall plan if things get worse. Other physicians tend to start with topical, injection AND oral treatments first.
I’m in the second group. Provided the patient agrees, I generally believe in trying hard to stop the disease. I’d rather be a bit more aggressive first and then remove various treatments quickly once we know the disease is calming down than start slowly to add treatments once the patients gets worse and worse. There’s no right or wrong answer but one must remember that most of the time hairs that are lost in scarring alopecia are gone forever.
How do I know if my scarring alopecia is “active” or not?
This is a very common question but surprisingly a fairly easy question to answer much of the time. A patient’s scarring alopecia is active if a photograph shows the hair loss getting worse over time. In other words, the patient themselves can determine if a scarring alopecia is active by looking at their photos from time to time. If the hair loss is getting worse, it’s probably active. If the hair has not changed a bit over a period of a few years, it’s probably stable.
A physician can also determine if the scarring alopecia is active by taking a close look at the scalp. The appearance of redness and/or scaling around hairs may be a clue that things are active. Hearing from the patient that there is ongoing itching burning or pain are important signs that things are active.
However, there is a really important point that physicians often get wrong. Even though one can determine if a scarring alopecia is active by looking at the scalp. One can not determine if a scarring alopecia is quiet by looking at the scalp. The only way that one can confidently know that a scarring alopecia is in remission is with repeat photography over time. Some scarring alopecia’s appear very calm, and one would be tempted to say that it is inactive only to find that the patient has still lost hair when followed over time.
Is my treatment working?
There are many things that one must look at before determining if a treatment is working. If one has a lot of itching, burning or pain and finds that the treatment is helping to reduce that itching, burning or pain, then the treatment is likely working.
One must be careful not to use this as the sole criteria because the ultimate test as to whether a treatment is working is the determination at a time point 6 months and 12 months after starting the treatment as to whether there has been more hair loss or not. If there has been more hair loss, the treatment is not working well. If there has been no further hair loss, the treatment is working well.
Should I be doing steroid injections or not?
Steroid injections are helpful for some types of scarring alopecia’s. The decision as to whether one should be using steroid injections or not really needs to be taken on a case-by-case basis. Often, it’s reasonable to begin with steroid injections at some point early on in the disease course to see if these injections can help stop the disease. However, not all patients need steroid injections if their current treatment plan is successfully stopping the disease.
What caused my scarring alopecia?
We’re still learning a lot the causes of scarring alopecia’s and still don’t have all the answers. At present, it would appear that scarring alopecia’s are caused by a variety of processes that destroy hair follicle stem cells and oil glands (sebaceous glands). For some conditions, such as lichen planopilaris, it would appear that the production of abnormal (pro-inflammatory, toxic) lipids by the hair follicle, plays a very important role. In scarring alopecia’s like folliculitis decalvans, it would appear that bacteria such as Staphylococcus aureus plays an important role.
Am I at risk for other diseases because I have scarring alopecia?
Most patients with scarring alopecia are healthy. Various research studies have shown that a small proportion of those with scarring alopecia may have other health issues. For example, we know that individuals with lichen planopilaris may have a higher chance of having thyroid disease. Rarely issues such as high cholesterol may be present as well. The risk of low vitamin D appears to be increased as well.
Rarely, patients with discoid lupus are at increased risk for developing systemic lupus a disease that affects many organs in the body. Fortunately, this is not common. Patients with dissecting cellulitis may have acne, boils in the armpits and groin, and pilonidal cysts.
Can my scarring alopecia stop on its own?
Yes, scarring alopecia’s can stop on their own. We call this spontaneous remission or spontaneous burning out of the disease. However, not everyone’s scarring alopecia will burn out spontaneously. For those that do burn out spontaneously, the timing is highly variable and time course for spontaneous burning out can range from 1 year to 20+ years.
What blood tests should I be getting?
The precise blood tests that are ordered will vary from doctor to doctor. Some physicians don’t order any tests and simply let the patient’s story guide them as to what they should be ordering. Some order complete panels of blood tests on everyone.
Generally, I order CBC, TSH, ferritin and vitamin D on all patients with hair loss. Other blood tests may be ordered on a case-by-case basis including ANA, zinc, ESR, CRP, ENA, creatinine (kidney function tests), and liver function tests.
How often should I be seeing my hair loss physician?
The interval between appointments will depend on a variety of factors including the type of disease and the treatments being used. For patients with active disease who are just starting on new treatments, follow up every 4-6 months is reasonable at minimum. Patients receiving steroid injections may be seen every 4-6 weeks as well.
How often should I be taking photos of my scalp?
One should take photos every 3 months.
I think my disease has become stable. Should I get a biopsy again to check?
No, this would not be my recommendation. If one has not lost hair over an extended period of observation (i.e. 3-5 years), the patient’s disease is stable (inactive) by definition. The results of the biopsy will not sway this in any way.
Can I have a hair transplant?
A hair transplant may be possible for some scarring alopecia’s. For certain types of scarring alopecia’s, it is generally not a good idea. Scarring alopecia’s such as lichen planopilaris, frontal fibrosing alopecia and central centrifugal cicatricial alopecia can be transplanted provided they have been completely quiet (inactive) for 2 + years. Scarring alopecia’s such as discoid lupus and folliculitis decalvans can be transplanted provided they are inactive but tend to be more challenging. Success rates are lower in the later two conditions.
How long will I need to be on my treatment?
Generally speaking, most patients are on some type of treatment for several years. Initially, one may use a few treatments simultaneously such as topical steroids, and perhaps steroid injections with some type of oral medication. Over time, as the disease stabilizes, treatments will be slowly removed. Oral treatments might be removed first while continuing steroid injections. Over time if further improvement occurs, the interval between steroid injection appointments may be increased (i.e. from every 6 weeks to every 4 months). Eventually, these too may be stopped but the patient will continue on periodic topical steroid for some extended period of time. Some of my patients with very stable disease use a topical steroid once every two weeks.
Will I pass this condition on to my children?
Most scarring alopecia’s don’t seem to have a strong genetic component. For example, we don’t typically see lichen planopilaris or frontal fibrosing alopecia run in families (there are exceptions of course). The one scarring alopecia that may have a strong genetic component is central centrifugal cicatricial alopecia (CCCA). This may be more likely to be passed down in families.
If I don’t treat my disease and just let it run its course, am I harming myself in anyway?
There is no scientific evidence at present to suggest that by not treating the disease that one is placing themselves at any type of increased risk for other health issues.
Besides taking medications, are changes in my diet or addressing things like stress likely to help me?
Reducing stress in those that have high levels of stress could play an important role in improving one’s quality of life and sometimes even reducing symptoms like itching, burning or pain. Whether this actually helps stop the disease is unknown.
The role of diet continues to be explored. Certainly, diets rich in fruit and vegetables give the highest chance of providing antioxidant and anti-inflammatory benefits. However, whether avoiding certain foods (i.e. nightshade vegetables) or whether following certain other types of diets is helpful is still undetermined.
Is it okay to dye my hair?
For most people with scarring alopecia, the hair can continue to be dyed. If there is any evidence of irritation from visits to the salon this should be carefully reviewed with a dermatologist.
Should I change how often I shampoo my hair?
The frequency of shampooing does not need to be changed unless specifically advised by the dermatologist or hair loss specialist.
Are there any shampoos you recommend?
Dr. Gerbrands will review if there are any changes need in your shampoo. For the most part, the shampoo that you were using in the past can be continued. If there is any evidence of seborrheic dermatitis on the scalp, this should be treated.
What supplements should I be using?
The key supplements are those that replace any deficiencies. If one is deficient in iron or vitamin D, these should be replaced. There is no great evidence for a role of other supplements at this time. If one is using prescription medications such as doxycycline to treat the scarring alopecia, one should speak with the dermatologist as to whether probiotics should be used as well.
Can I continue to use TOPPIK and similar camouflaging fibers?
These products are generally safe and can be continued. They should be washed out if topical medicines are going to be applied to the scalp.
Are there patient support groups nearby?
There may be support groups nearby. One can search Facebook, Google and Reddit to see if there are support groups for those living with scarring alopecia’s. I recommend that patients contact the Scarring Alopecia Foundation (SAF) at https://scarringalopecia.org to enquire about support groups that may exist in one’s geographical area.
