I was just diagnosed with frontal fibrosing alopecia and have just started treatment. How long will it take for me to see changes?
This is a great question. I answer this question for patients by first asking them if they are actually asking me “How long does it take to know if the new treatment is working?”
Clarifying this question is very important because patients who undertake a successful treatment plan may not notice ANY changes in their hair at all - which actually means the treatment is working. (This may seem obvious once stated but not always beforehand). Sometimes, a successful treatment will help regrow some hair and sometimes a successful treatment will simply help stop further loss (without regrowth). It’s really important that patients understand that both are potentially good signs.
There are two types of positive changes we look for when evaluating the success of treatment - one type is the “immediate” changes and the second is the “longer term” changes.
The immediate changes we look for after starting a treatment include reduction in symptoms (such as reduction in scalp itching, burning or tenderness) as well as reduction in scalp redness or the amount of scale. Some patients with scarring alopecia, especially those with frontal fibrosing alopecia, don’t always have any scalp symptoms to begin with so monitoring symptoms is not useful for this particular subgroup of patients. Even if the patient does not have symptoms, many do have redness or scaling and this parameter can be reevaluated at various intervals after treatment is started.
These so called “immediate changes” can be seen within a few days (ie rapid reduction in symptoms with some treatments) to a few months (ie reduction in scalp redness and scale within a few weeks of starting a treatment).
The ultimate test and most important test of how well treatment is working has nothing to do with symptoms and has nothing to do with what the scalp looks like - it simply has to do with what a photograph shows. However, to actually get a good sense of changes in actual hair regrowth growth can take 6-12 months depending on how fast the FFA was moving originally before the treatment was started.
A patient who comes in for a 3-4 month visit and says to me “my scalp feels so much better” may or may not be enroute to better controlling their scarring alopecia. I share their enthusiasm but must advise them that we won’t fully know for 6-12 more months if we are truly winning this fight and successfully stopping the scarring alopecia.