Is your vitiligo active or stable?

Last Updated on 4th May 2022 by Caroline Haye

Checking on skin changes as they happen

Like many other inflammatory and autoimmune conditions, vitiligo is unpredictable. It can become progressively worse or it can remain stable for years. It can spread slowly, rapidly or not at all. Not only can it suddenly flare up, but it can also re-pigment just as unexpectedly. So keeping tabs on changes in your condition from one day to the next can be challenging. Of course, dramatic alterations are easy to spot. But we aren’t always so observant about smaller, more gradual changes, with the result that they may go unnoticed for some time. So now might be a good moment to ask yourself, is your vitiligo active or stable? How can you tell? And why should you bother?

Why keep tabs on your condition?

I’m not saying you have to keep tabs on the condition of your skin. You might be perfectly happy to take things as they come. After all, it is what it is – right? And worrying about it can only make matters worse. Well, I agree that worrying is not a great idea. Stress is not good for vitiligo. But knowledge is. Knowledge is power. And knowing the state of your pigment losses or gains at any given time gives you options. In fact, there’s nothing like having options to reduce stress. So here are some of the benefits of knowing whether your vitiligo is stable or not…

• Discovering that it is either improving or stable can lift your spirits.
• If, on the other hand, it is getting worse, prior warning of the fact gives you time to decide on a course of action.
• Knowing the status of your vitiligo allows you and your doctor to make informed decisions about appropriate treatments and take prompt action.
• Observing changes in your pigment as they occur can give you valuable insights into what helps and what doesn’t. (e.g. You may notice that either flare-ups or improvements follow changes in your stress levels or other environmental or lifestyle factors.)
• Being more aware helps you to know what to expect and helps you stay in control, rather than feeling like a helpless victim.

How to spot changes in your vitiligo

Of course, new white patches are the ultimate proof of active vitiligo… Just as their disappearance is clear evidence of improvement. But a lot can be going on inside the body and under the top layer of your skin before these changes finally show up on the surface. And being aware of these early signs can help you to take action much sooner and possibly halt the process in its tracks, or even reverse it.

However, spotting these signs requires a more scientific approach than simply looking in the mirror from time to time. Small changes day by day are sometimes so subtle that they can fool you. And you may end up second-guessing what is happening because your imagination is influenced by your hopes or fears. So here are some ideas to help you spot changes in your vitiligo as early as possible. Not that I’m suggesting you follow them all. A combination of one or more of these may be all you need…

• Take regular photos of your vitiligo lesions so that you can make comparisons.
• Keep a health diary, including the dates of changes you observe, dietary changes, results of therapies used, etc.
• Get regular check-ups with your dermatologist if he or she thinks this is appropriate.
• Use a Wood’s lamp to get a better view of what’s going on with your skin. (This is a diagnostic tool that uses ultraviolet light to reveal early changes to the skin… You can request your dermatologist use one or you could buy one yourself. Alternatively, according to this article, you might even be able to use your mobile phone as a substitute Wood’s Light.)

5 clues that your vitiligo is active

If your vitiligo is spreading fast you will certainly know about it. But even if no new lesions are immediately obvious, this does not necessarily mean it isn’t active. Extended periods of apparently stable vitiligo can give you a false sense of security. So it’s worth bearing in mind that any of the following five phenomena can indicate it is unstable…

1. One or more patches of skin become pink / red or change colour (sometimes mottled with three different skin tones in the same area).
2. The texture of the skin alters, becoming rough with a rash or small raised bumps.
3. You experience irritation, extra sensitivity or itching (which can sometimes be extreme).
4. Affected patches of skin shed their dead skin cells more readily than your normal skin does. (i.e. If you rub your fingers firmly across the surface, dead cells peel off easily.)
5. You are losing tiny flecks of colour – typically the size of grains of rice – creating a marbling effect on the skin.

(Note: not everyone with vitiligo experiences the exact symptoms I have described above. For some people pigment loss is something that happens without any prior warning and with no other symptoms. The variations from one individual to the next is probably something to do with the fact that there are multiple vitiligo “pathways” and some are more inflammatory than others.)

5 signs that your vitiligo is improving

Here are five possible indicators of improvement that I experienced myself during my re-pigmentation and which seem to be quite common to other people too…

1. The white patches usually have convex outer borders if it is spreading and concave if it is shrinking. (In other words, whichever colour is bulging outwards is the dominant one.)
2. You start to see freckles in the white areas (often, though not always, at the outer borders).
3. Any additional symptoms of active vitiligo disappear (e.g. itching, inflammation, peeling etc.).
4. You are less sensitive to sun exposure and less prone to burning. (This is to be expected once you are fully re-pigmented. But I noticed my UV tolerance increase significantly, even before all the pigment returned.)
5. Your white patches turn a uniform creamy colour. (This happened in some of my vitiligo lesions. Instead of freckling and then gradually joining up like the others, these patches just gradually became less and less white.)

Can vitiligo get better and worse at the same time?

If you had asked me this question during my own recovery, I would have said that it was not possible to improve and worsen simultaneously. And I would have based this on two reasons… Firstly, such a thing just sounds so improbable. Surely you are either getting better or you are getting worse, right? And secondly, it was not something I ever experienced myself. So I didn’t know it could happen. My re-pigmentation, once it started, progressed entirely in a positive direction, with no new lesions appearing at all. However, since then I have heard from a number of people who tell me that they have had new patches appear at the same time as old ones were re-pigmenting. So, as I have no reason to disbelieve these individuals, I no longer doubt that this can and does occur in some cases.

I am not qualified to explain what is going on inside the skin to cause this strange phenomenon. But it certainly sounds like a classic case of “good news and bad news”. On the one hand, it proves that your skin is capable of re-pigmenting. But, on the other, it is a clear sign that your vitiligo is still unstable.

A theory

The only explanation that makes any sense to me is that perhaps these individuals were all seeing the first signs of success with their attempts to re-pigment but were still missing a vital component in their therapy or their circumstances. So their battle against pigment loss was winning on some fronts but losing on others. For example, maybe they were seeing the benefits of improving their nutritional status but were still exposing themselves to certain environmental triggers. (Read more about triggers in Vitiligo Susceptibility.) Or maybe one vitiligo therapy was starting to produce results at the same time as some other health issue (e.g. an allergy or food intolerance) was interfering with that progress.

Whatever the reason for such cases of simultaneous re-pigmentation and de-pigmentation, I like to think of them as a sign that your body is ready and willing to heal itself, given the right circumstances… A clear indication that, with a little tweaking of your chosen therapy, you will be on the road to stability or, better yet, recovery.

More reading on this subject

The information I have shared in this post is based on my own experiences of de-pigmentation and re-pigmentation, along with anecdotal feedback from other vitiligo sufferers. You can read more about the various patterns of re-pigmentation in my earlier post: 3 Examples Of Vitiligo Recovery. As always, I have also drawn on extensive reading of medical literature.

For more in-depth information, from a scientific and clinical viewpoint, I highly recommend Dr John Harris’ blog on the different types of vitiligo and the different ways in which re-pigmentation occurs. In particular, I recommend reading his explanation of the differences between segmental and non-segmental vitiligo, since my blog is mainly relevant to the non-segmental (most common) variety.

Finally, further clinical information on the importance of determining vitiligo stability (mainly in the context of surgical vitiligo treatments) is also available on the following links:

The Concept of Stability of Vitiligo: A Reappraisal

Stability in Vitiligo: Is there a Perfect Way to Predict it?

How is lesion stability determined in vitiligo?

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