Tarasha, a patient with vitiligo, shares the treatment regimen her dermatologist recommended and the importance of patient-physician communication.
Heather Woolery-Lloyd, MD: Tarasha, what treatments have you gotten for your vitiligo? I know you said that you opted not to do treatments. But what treatments were recommended by your doctor?
Tarasha: Topical cream. That is the only thing. I am sitting here shocked because tests were not run on me when I went to the dermatologist, or even to my primary care doctor. They never ran tests on me to see if anything else was going on with my immune system. Nobody ever ran any type of test. The only thing that was recommended was for me to use a topical cream if I wanted the pigment to stop reducing.
Heather Woolery-Lloyd, MD: I know you opted not to do treatment. Can you talk us through a little bit how you came to that decision?
Tarasha: I think that if I would have decided to do a treatment, whether it was topical or anything else, and I didn’t see results, it was going to hurt me more than going through vitiligo. I just opted not to put myself through the disappointment of it not helping me. I just didn’t want to. It’s that easy. I just didn’t want to.
Heather Woolery-Lloyd, MD: I understand. I always explain to patients that there’s no right or wrong answer. So, we can offer treatments, but it’s the best treatment option for you. I understand you had such rapidly progressing disease. I understand where you’re coming from where if it didn’t work, it would make it even worse.
Tarasha: Honestly, outside of recently, I don’t think I had a good rapport with my dermatologist, which is one of the reasons why I wanted to switch. When I went, they said that it was just what it was. That’s it. No tests. No nothing. Then I went back because I started gaining my pigment back. I asked, “What's going on? Is this regular?” They replied, “Yep. It’s regular.” I asked, “Can you explain it to me? Why does it happen? Is it something particular that causes this to happen?” But I just got short answers. So, I haven’t been back. Other than seeing Dr Lain, I have not been back to my dermatologist.
Heather Woolery-Lloyd, MD: Dr Lain, tell us, what topics should we discuss with our patients? Tarasha brings up some very good points.
Ted Lain, MD: We have to discuss the concomitant option of possibly having a thyroid disease. That’s very important. I’m surprised that wasn’t discussed with her, and that makes me upset, quite frankly. Otherwise, we have to talk about the fact that this could be a remitting and relapsing process where there could be a spontaneous improvement of the pigment, which is what Tarasha just talked about. Whether or not you have any treatment at all, pigment may just come back. Then it may go away again. It may just have its own course.
We should then talk about the treatment options. The real basis of that discussion is that treatment takes time with vitiligo. You have to realize this is a marathon and not a sprint. It is something where we could start a treatment or multiple treatments at the same time. You may not see any improvement for 12-16 weeks, so for 3-4 months, and then the pigment starts coming back. I do discuss how the pigment comes back with patients in terms of that perifollicular pigmentation that occurs from the stem cells in the bulge of the follicle. That’s the most common type of re-pigmentation, where you get small bilens of re-pigmentation within the larger area of vitiligo. That is more commonly seen first.
Then, we can see marginal re-pigmentation, which is pigment that comes in from the margins of the larger area. This is usually a much slower phenomenon. But I like to make sure patients understand that they are going to see little bilens that happen first that will then coalesce most likely. Up until recently, with the advent of ruxolitinib cream, the options that we had were bringing pigment back usually much darker than the pigment for their original pigment, which then lightens over time. Patients have to understand that when the pigment comes back, it can actually appear much darker, which is cosmetically unappealing. It is, unfortunately, the way it happens. Over time it does tend to contrast match the original pigment in the skin.
Those are the points that I discuss in terms of treatment options and the treatment pathway in my newly diagnosed patients.
Heather Woolery-Lloyd, MD: I spend a lot of time talking to patients because it does take so long for the skin to repigment with treatment. It’s not a 2 weeks and you’re better kind of thing. It’s several months. It is important to set realistic expectations with our patients.
Transcript edited for clarity