Last Updated on 2nd November 2020 by Caroline Haye
A journey of discovery
Individuals’ experiences with vitiligo treatments vary enormously… The reason, I suppose, being that there are so many variables at play. There is no single cause of vitiligo. And there is no one-size-fits-all treatment. The pathway of the disease involves not just one route, but many. And the way the condition affects each individual depends on multiple factors.
Because of this, many people have a fatalistic attitude about vitiligo. (Including many doctors.) They prefer to let it take its course, rather than being proactive… Which is a pity because there are, in fact, many effective therapies. It’s just that the same ones don’t necessarily work as effectively for one person as they do for the next. So, finding the best vitiligo treatment for each individual can take time and patience. And, for this reason, it is something the individual must often take a major role in doing for themselves.
Many people with vitiligo are on a mission
Of course, it is not healthy to obsess over your health. You can’t spend all your time and energy (or your money, come to that) on your vitiligo. But if you really want to improve it, you will need to take responsibility for getting the right information and trying the therapies that are most likely to help you. Unless you have a particularly switched-on doctor to drive this for you, you will need to be on a mission yourself to make it happen.
You can read about my early efforts at finding vitiligo therapies in My Vitiligo Success: A Journey Of Trial And Error. During that time, I felt as if I was the only person in the world looking for answers. It wasn’t until social media came along that I started to realise there were other people out there just like me… People who had vitiligo and were on a mission to either conceal or heal their white patches. And, I should add, there are also many who are on a mission to educate and raise awareness of vitiligo, which is every bit as important… If not, more so.
The Vit Pro blog (and, later, Vitiligo Store) grew out of this realisation and became my new mission. In the process of this, I often rub virtual shoulders with other ‘vitiligo students’ who share a passion for the subject and whose opinions I have come to appreciate and respect. One such person is PK from Sheffield, whose search for answers has led him on an eventful voyage of self-education and self-experimentation. As you are about to find out, he has steadily worked his way through an impressive number of therapies so far. And, in doing so, he has experienced varying levels of success… A fact that brings us back to the starting point of this post: vitiligo is complex and no single therapy works 100% of the time for 100% of the people.
Meet PK – a case study in self-experimentation
PK’s vitiligo started when he was about seven years old, following an injury to his foot. He now recognises this event as an example of the Koebner effect or ‘Koebnerisation’, which is when a skin condition develops at the site of a skin trauma. And the fact that his brother also has vitiligo, although to a lesser degree, suggests a hereditary dimension too.
“My vitiligo is on my ankles, knees down to the shin, elbows and a small amount on my lips,” says PK, when I ask him how widespread it is. “Many years after this, I also began to get small amounts on my fingers and thumbs. And last year, I got two small patches in my armpit. But my condition has been relatively stable for a long time, with just a few new patches.”
When I ask PK what his experiences were growing up with vitiligo, he says, “I had quite a lot of verbal bullying about my skin and ended up with a nickname of ‘Piggy’.”
When he says this, I wonder how that experience must have made him feel and how many other children with vitiligo have suffered similar taunts. Kids can be cruel, even if they don’t mean to be. But they can also be kind and caring if they are given the right information. All the more reason for our collective mission to educate and raise awareness. After all, this is how we create a more supportive and accepting environment for young people today and in the future.
A traditional Indian remedy
“At that time, there were no treatments available in the UK”, says PK. “So I went to India when I was in my teens and had something from a ‘village doctor’. I have no idea what was in it. It was like a gritty paste. It bubbled up some of my skin with a fluid and afterwards some pigment came. But this was not a nice treatment. “
Hearing PK talk about this, and his subsequent experiences with a range of different therapies, makes me realise what a positive outlook he has. He knows as well as anyone that there is no cure yet for vitiligo. But he rejects the idea that it cannot be treated. Not only does he refuse to be defeatist, he is actively willing to put in time and effort to do his own fact-finding and to try out those therapies that have a track record.
PUVA and steroid creams
“I then tried PUVA from an actual dermatologist in India when I was approximately seventeen. I was prescribed Psoralen tablets and either sunbathed or, when in the UK, used a sunbed. It didn’t take a very long exposure each time to turn the skin pink. (This is the effect we were aiming for.) And I got pigment back from this quite well, as far as I recall. No one back then knew that vitiligo has a kind of ‘memory’ and that it’s likely to reappear… which it did. So I had a period of gaining and then losing some pigment whenever I stopped a course of treatment.”
PK goes on to explain that, when he was in his late 20s, he began using a number of different steroid creams, including Eumovate and Betnovate. These appeared to stabilise his vitiligo but only achieved a minimal gain in pigment.
‘Dead Sea treatment’ and Narrowband UVb
“Then, in my mid 30s, I went to the Dead Sea with Professor Schallreuter after reading about her treatment online. Her website had a lot of information on it and I started becoming interested in the science and research side of vitiligo. I got new pigment after thirteen days, which continued on my return from the twenty-one day trip. I purchased a narrowband UVb unit via the Professor, which I still have. And I continued with her therapy for a while. This was the treatment that, for me, led to the most improvement.
“I also learned to manage my treatment so I wouldn’t lose what I had gained. My left leg was almost completely re-pigmented and my right leg was approximately 30% re-pigmented. I got some freckles on my elbows that joined up to a small degree. And there was minimal success on my ankles, but some improvement… There was also a cost to the cream needed for this treatment, so I then started using just narrowband UVb on its own. After a while, I stopped seeing any improvement but also had no new patches or losses of gained pigment.”
Protopic
Several years ago, PK tried prescription Protopic (tacrolimus) together with narrowband UVb for a time but saw no significant changes to his vitiligo. It was not until much later that he learned Protopic is mainly effective for facial re-pigmentation, rather than elsewhere on the body. So he admits that his lack of results may have been due to the fact that he had only tried it on non-facial areas.
NCTF 135 treatment for vitiligo
A few months ago, PK heard about an experimental treatment being trialled by Dr Veronika Konstantinova in Russia, using injections of a vitamin / antioxidant complex called NCTF 135. He was intrigued to read that significant re-pigmentation had been achieved with a small number of patients after as little as a couple of weeks using this technique.
“After doing some due diligence, I got in direct contact with Dr Konstantinova who agreed to treat me. Unfortunately, COVID restrictions made this difficult. But I managed to find a practitioner not far from me who already uses NCTF 135 as a cosmetic treatment for wrinkles. The practitioner, a registered nurse, working in an aesthetics clinic, was unaware of the vitiligo trial. But, after liaising with the NCTF 135 manufacturer and Dr Konstantinova, a five week course of treatment was arranged.
“The process is quite simple and straightforward. The solution, which is all natural organic compounds, is injected just below the surface, a little papule is created and the solution dissipates. It’s very quick, although the time it takes depends on how much vitiligo you are treating.”
After three weekly sessions, PK found a small amount of colour came back on one of his fingertips, not as freckles, but more like an even wash of colour. This was not a spectacular result. But it was encouraging, given that he had chosen to restrict the treatment to patches that had never responded to any other therapy. However, a small patch of vitiligo also appeared in a new area and he decided not to complete the course.
How PK became a ‘vitiligo student’
Just before he began his Dead Sea treatment, PK had started a new relationship and subsequently became a father. During this time, he was less concerned about his vitiligo. However, when the relationship ended he threw himself into researching everything vitiligo-related that he could find. At that time, he tells me, he would spend literally hours at a time, five to six days a week, gathering information. And, while he spends less time on it now, it’s clear to me that the whole subject still holds a very personal fascination for him.
“This is how I have come to know so much about the latest research,” he explains. “I also found various success stories, including your website, which I found very helpful and informative. I have read every word of your site and many others. The process of researching and learning has been enjoyable and, of course, informative.”
As well as reading everything he could find online, PK also took an interest in social media and vitiligo forums.
“I joined a vitiligo Facebook group and am alarmed at how little some people know about their condition… Especially that some think there is nothing that can be done. I try and make other members more aware of the fact that there really are effective options.”
Digestion and diet
PK counts himself fortunate to have had great support from his local GP practice. In particular, they were helpful in arranging various tests to see if he had any other issues that might be related to his vitiligo. He had a full blood count done and his liver and thyroid function checked. The results were all within the normal range. However, they did discover Helicobacter Pylori (a.k.a. H Pylori), a bacterial infection of the stomach that seems to be a more common issue for people with autoimmune conditions than those without. And, in spite of curing the infection, he still sometimes suffers with “burpy” digestive symptoms and bloating, which cause him to wonder if he still has some unresolved digestive problem.
“I am aware that low stomach acid can cause malabsorption of nutrients”, he tells me, “so that may be my root cause. I expect that another 3-6 months [of taking gastric-acid-boosting supplements] will tell if this is the case.”
“My diet is a lot cleaner”, he says. “I am mainly, though not exclusively, plant based. The main reason being the antibiotics / hormones / poor quality feed they give animals. I go organic where I can in relation to fruit and veg and generally only eat meat outside my home, for example if I go to a restaurant. I cook most of my own food so I know what I am putting in my mouth.”
PK’s tips
Based on his own experiences, PK recommends, as a starting point, having all the relevant tests that are available from your doctor e.g. bloods, liver, thyroid etc., before moving on to alternative therapies or practitioners.
When I ask PK about the safety implications of his trial and error approach to vitiligo treatments, he replies, “When I was young, I was less worried probably because I was less informed about any safety issues and highly conscious of how my vitiligo looked. Now I am older, I would give more thought to safety issues and research as much as I could. My journey started when there was no internet. I would advise anyone nowadays to research as much as they can and do their own due diligence.”
He is the first to admit that he has not found the holy grail of vitiligo treatments. But he has had significant results from several of those he has tried… Primarily narrowband UVb, ‘Dead Sea treatment’ and various topical steroids. And he has found that, by repeating maintenance courses of these on a fairly regular basis, he has been able to keep most of the gains that he has made.
Taking responsibility
Developing the condition at a time when information and options for vitiligo patients were scarce, he eventually found that taking responsibility for his own health was his best route to finding the answers he was looking for. His ongoing search demonstrates the power of knowledge and self-determination. And his successes along the way show that being proactive about your vitiligo can give you more control over your condition than you may have thought possible.
Footnotes
Hearing PK’s story makes me realise how relatively few therapies I had to try before finding one that worked for me. However, I didn’t find it until quite late on in life. So you couldn’t exactly call it an overnight success.
One tip I would add on this subject, from my own experience, is that most therapies take time to produce results. The length of time depends on the type of treatment and on the individual. Some people are lucky enough to see visible results from a given treatment within a matter of weeks. But it is more likely you would need to allow anything from three to twelve months before you can know if a therapy is going to work for you.
Finally, I would like to thank PK for taking the time to share his experiences with me and to stress, on behalf of us both, that trying out different therapies is something you should only do after appropriate due diligence and, in the case of prescription drugs, only under qualified professional advice.
