Treatment

Treating Your Vitiligo

 

A lot of pills on white background - 3d render

The advice on this page is for people resident in the UK.

However treatment for vitiligo is reasonably standardised across the world, with a first and second line of ‘attack’ on the disease’s progression, and on the patches that a patient has when they first go to the doctor.  

If you have any concerns about your health you should always consult a medical professional and nothing written on this page should be a substitute for that advice.  We also do not recommend purchasing drugs or medical equipment from internet sites.

We would also like to recommend the Centre of Evidence Based Dermatology in Nottingham as a source of information on any treatment that you might be considering, wherever you are in the world.  They’ve assembled a systematic review of research and trials into vitiligo and it’s an amazing, free piece of work available to you, to answer questions you may have about your condition.  Please take a look at it here.

This page is divided into four sections:

  1.   Attending an appointment with a GP: what to expect; what treatments might you be offered

  2. Attending an appointment with a dermatologist: what to expect; what treatments might you be offered

  3. Attending a camouflage appointment: what to expect

  4. Getting psychological support 

  5. Are there any alternatives?

1.  Attending An Appointment With a GP

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Asking about your medical history:

At your first appointment, a GP should ask you questions about the white, depigmented, patches that you have.  They should take a family history to see if anyone else is affected.  They may also ask you about whether you have any other auto-immune disorders (in particular thyroid disease, as people with vitiligo have an increased risk of auto immune thyroid disease (1)).  Your doctor may also want to eliminate other causes for your white patches.  See our “What is vitiligo” for other possibilities.

Using a Woods Lamp:

Some GPs may use something called a Woods Lamp to examine your white patches.  The reason for doing this is because the white skin affected by vitiligo has clearer borders under the black light of the lamp, and fluoresces bright blue-white (or sometimes, yellowish green).  This is a Woods Lamp

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Questions about how you are coping:

There is also a questionnaire that we hope may be used, that asks you about how you are coping psychologically with your vitiligo.  This is called the VitiQoL – it relates to your Quality of Life with the skin disease.  You should be able to see the questions via this link.  This may be also used at hospital appointments rather than at your GP.

Prescribing a cream on your patches:

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In terms of the first stages of treatment, the British Association of Dermatologists, and others, recommend the use of what are known as ‘potent or very potent topical corticosteroids’.  These are creams or ointments (topical means they are applied directly to the skin), and their principal ingredient is a hydrocortisone-based steroid.  They are most likely to be prescribed for your patches that aren’t on your face.

Steroids in the UK are divided into four categories of strength, or potency.  

The terms used are ‘mild’, ‘moderately potent’, ‘potent’ and ‘very potent’.  The steroids for vitiligo are potent ones, and examples are 0.1% betamethasone validate (brand name Betnovate) and 0.05% clobetasol propionate (now sold under its generic name Clobetasol).

You may be aware of the risk of side effects that come about with long term use of a steroid cream, which are thinning of the skin, developing acne and the possibility of stretch marks.  

For this reason, you will be told to apply the steroid ‘discontinuously’.  This means that you would use the cream for a six month period, and in each month would only apply cream once a day onto your patches for fifteen of the thirty/thirty-one days of the month.   Steroid creams are prescribed generally for patches on the body, and not the face or neck

For the face and neck, you may get a ‘topical calcineurin inhibitor’.  These creams divide into two types:  Tacrolimus ointment (known as Protopic 0.03% and 0.1%) and Pimecrolimus cream (Elidel).

The creams work by reducing your skin’s inflammatory response, which has an effect on the immune response of your skin cells.  These have less side effects than steroid creams, apart from increasing sun-sensitivity.  They can be applied ‘continuously’, for a six month period and twice a day.  

What else might I be offered?

You are entitled to get prescriptions for sunscreens if you have vitiligo, particularly on your hands, face and feet.  There is more information on what you can receive on prescription in our ‘Sunscreen’ section, but the three brands available, all in 50SPF, are Sunsense, Uvistat and L’Oreal Anthelion.  If you pay for prescriptions the Sunsense 500ml pump is the most economical option, and can be decanted into smaller bottles to carry with you.

Treatments7sunscreen

Your doctor can also refer you for a camouflage appointment.  These are supplied by Changing Faces, a charity that works for anyone with a visible difference.  More information is in section 4 below.  In some areas you can refer yourself online.  There is a waiting list in most areas for these appointments.

However there is also a possibility that your doctor may say that vitiligo is something that is easy to manage, on the basis that it isn’t painful and so shouldn’t bother you.  This may feel dismissive and hurtful.  They may offer you a referral for camouflage, to hide your vitiligo away, but not much more.

Please do not be discouraged if this is the case.  The impact of vitiligo is not proportionate to the size of your patches, or to whether it hurts physically.  It is a disease that can be very hard to live with, and you are entitled to receive treatment for your vitiligo, if you want it.  

Research has shown that early treatment, on patches on your face for example, can be very effective (2).  

Please use our Facebook Group and Twitter account to let us know how you get on, and to get support as you seek treatment.  

  1. An epidemiological survey of 374 white patients with generalised vitiligo (most with sporadic occurrence) and their families, in the UK and the US, showed that 19.4% of patients aged at least 20 years with vitiligo reported a clinical history of autoimmune thyroid disease, compared with 2.39% of the overall white population of the same age Management of patients with vitiligo Dr Viktoria Eleftheriadou, GP Online
  2. Report by A. Sasase, C Hihiro Honda and K Hayashibe Of the Shibata Clinic of Dermatology, Osaka at The XXIst International Pigment Cell & Melanoma Conference, 2011

2.  Attending An Appointment With A Dermatologist

If you want to receive further treatment, in a hospital, you will need your GP to refer you to see a consultant dermatologist. There is currently a chronic shortage of consultant dermatologists in England and Wales, and services are under a lot of pressure.  

You may have to wait for an appointment, and you might see a locum consultant when you get your appointment.

When you do, the consultant will probably want you to go to Medical Photography, to record the extent of your vitiligo at the first appointment.  The consultant should also ask you questions about how you are coping with the disease, and be able to refer you to the hospital’s “Psycho-dermatology” services (if they have any).  

If you do go to Medical Photography, be prepared to be photographed all over to show your patches.  This should be repeated at the end of any treatment programme you receive.In a hospital, you may meet the dermatology nurses, who often have practical advice and information to give you.

Phototherapy:

The main reason for seeing a hospital consultant is to access phototherapy services, which are all given to patients in a NHS hospital setting.  treatment6phototherapy_machine

The basis of phototherapy is to reduce inflammation in the skin’s cells.  There are 3 types of phototherapy, which relate to whether treatment is done using Ultra Violet B rays, or Ultra Violet A rays.  When out in the sun, UVB rays are responsible for the burning and redness you see on the surface of your skin.  UVA rays penetrate the upper layer of the skin down into the dermis and cause more structural damage to your skin cells in the long term.  In phototherapy the use of the rays is carefully controlled and monitored to give you personally the optimum dosage to affect your skin.

 1.  Broadband UVB

‘Broadband’ means that the full UVB spectrum is used in the treatment.  

2.   Narrowband UVB

‘Narrowband’ means that only a narrow or small part of the spectrum is used in treatment

3.   PUVA

This treatment involves two stages.  The first is treatment with a substance called ‘psoralen’, either orally or by bathing in it.  This increases the effect of UVA on your skin.  Then you receive UVA light treatment.  

Generally, this is only used if UVB treatment hasn’t worked, and in cases of psoriasis and chronic eczema.  PUVA tends to be used where less than 20% of the body is affected by vitiligo.

What happens if I have phototherapy?

You will have to be free to attend a phototherapy clinic, in a hospital outpatient department, at least twice a week, and for a period of three months or longer.When you first go you will be asked some questions about your normal response to sunlight – so the hospital know your Fitzpatrick Skin Typemore information here.The treatment takes place in a walk-in cabinet, that uses medical grade fluorescent light bulbs.  Your first few sessions will be very brief, though you may still burn, and will gradually get longer.  You will get goggles to protect your eyes, and men will need to cover their genitals.  

Side Effects:

There are possible short-term side effects from receiving light therapy. These include:

Sunburn – this can be treated afterwards with painkillers, after-sun creams and by cooling the red or sore areas with a flannel soaked in cold water

Dry and itchy skin – you can use a body moisturiser on these areas

Folliculitis – you may get an inflammation of your hair roots.  This is not something that will prevent you from receiving more treatment, and should pass

A sunlight-induced rash called polymorphic light eruption may develop whilst receiving ultraviolet light

Cold sores – this may require you to cover areas with sun block where you commonly get these each time you attend 

Potential long-term side effects of phototherapy include:

Premature skin ageing

Skin cancer (the risk of skin cancer is related to your total lifetime exposure to ultraviolet light, and other factors such as how easily you burn in the sun; the risk is higher with repeated courses of UVB and PUVA).  Research has shown however that if you have vitiligo, you are at a lower risk of malignant melanoma – more information from the NHS on this can be found here.  

Please note though that malignant melanoma is only one type of skin cancer, and you can find out more about other types on this site.

The leaflet from Southampton Hospital provides a lot of useful information about attending a phototherapy appointment.

There are other light treatments, including treatment with excimer laser, and more information can be found here.

3.  Attending A Camouflage Appointment

treatment camouflage

Camouflage appointments are provided primarily by Changing Faces, a charity that has worked hard to help people with any change in their appearance.  Previously they were run by the British Red Cross, and you may still see references to them in older websites and literature.

There is a waiting list in most areas for camouflage.  If you live in the following areas you can refer yourself for a camouflage appointment:

Avon, Bedfordshire, Berkshire, Buckinghamshire
Cambridgeshire, Cornwall
Devon, Dorset
Gloucestershire, Hampshire
Isle of Wight, Kent
Norfolk, Oxfordshire
Somerset, Suffolk, Surrey, Sussex
Wiltshire

The form for self-referral can be found here.

Your GP can book this appointment for you online whilst you are with them in the surgery.  The link to book appointments can be found here.

At the appointment, you will meet a Practitioner one-to-one, a volunteer who has been extensively trained to find the best matched camouflage products for your skin colour and tone.

You will spend at least an hour working through different options, and being taught how to apply the product.  The practitioner will be able to answer your questions, and spend time making sure that you are comfortable with the colour choices they will recommend.

Then the practitioner will give you a letter to take back to your GP, to request the items on prescription.  These will usually comprise a camouflage product and a fixing powder.  Brushes, sponges and applicators are not available on prescription.

You can also buy products yourself, but they are expensive.  Some people report difficulties in getting products ordered on prescription from their chemists, so please report this back to your GP.

There are other alternatives.  One is to get an appointment privately with a camouflage expert (not just a make-up artist).  Check and make sure that they have received training from the British Association of Skin Camouflage which is the charity that trains and monitors the use of camouflage in the UK.  

Some people also find fake tans useful, and a range of products are available to cover the skin generally, not just your white patches.  There is also a new product on the market called Vitiliglow, which has been formulated by someone with vitiligo herself, and gets good reviews from people with vitiligo.

Camouflage is an amazing product and can liberate people who feel very inhibited by their patches.  However you may have reached the stage where you feel happier not using it.  The decision is a very personal one, and you should feel confident in your own choice.  There is a great article online about making the decision, which was written by a lady with a birthmark called Rachel Anderson.

4.  Getting Psychological Support

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The following list of websites and treatments are not a replacement for mental health assessment and treatment.  If you experience thoughts of self-harm or suicide please see your doctor or accident and emergency department as soon as possible.  The websites listed are those generally available and the charity has not benefited in any way by their inclusion on this list.

Coping with vitiligo can be very hard.

It changes your appearance, and is often not something that is easily hidden from others, without choosing to wear camouflage every day, all over your body.  People with vitiligo tend to find summer harder to deal with than winter, and can have a crisis of confidence then.

It is true that some people manage their vitiligo and aren’t bothered by it.  This may be because they haven’t got it on their faces or hands, or just because of the way they are.

However there is no shame at all in feeling overwhelmed by it or wanting to have some support with the impact it has on its life.  

It is a chronic disease, treating it is time consuming and often unsuccessful, and so you have to manage the nature of the disease – capricious and unrelenting – alongside the change in the way that you look, and the way people react to your changed appearance when you are out and about.

In the UK, you usually have to seek psychological support through your GP.

They can refer you for talking therapy – there will be a waiting list for this.  This involves seeing a therapist in one-to-one meetings. 

ONLINE THERAPY:

Or they may refer you for online CBT therapy, where you type your answers to a therapist’s questions and work together online without meeting or speaking to each other.  This can work for you if you can type quickly, have access to the internet in private and would prefer not to see someone face-to-face.  You may also be able to self-refer for this service, bypassing having to explain yourself to your GP.  Check out Ieso, the provider, on this link.

PSYCHO-DERMATOLOGY SERVICES:

In some areas of the country, the dermatology department in the hospital runs what are known as psychodermatology services.  Unfortunately these are very rare.  If you read the responses via this link to the British Association of Dermatology’s survey on psychodermatology, you will see that of the 129 hospitals surveyed only 5% had a dedicated psychologist who worked in the dermatology clinic and saw patients who presented with anxiety or depression, or specific illnesses relating to the mind.  Otherwise patients see a dermatologist, and are then referred back to their GP for a further separate appointment with a psychiatrist.  If a patient is under 16 they have to be referred to CAMHS in their area, which is under-resourced and has long waiting lists.

 WHAT ELSE IS THERE?:

1.    You can find a private counsellor to help you with issues like social anxiety or depression.  You will have to pay for these sessions.  It is extremely important to make sure that the therapist you choose is registered with a reputable body.  In addition, you should make sure that this is somebody that you can trust personally and build a therapeutic relationship with.  This may take a few sessions, but you are free to decide if someone isn’t the right therapist for you, and to look for someone else.

A list of links of organisations that have approved therapists is taken from the NHS and includes:

British Psychological Society: psychologists

British Association for Behavioural and Cognitive Psychotherapies (BABCP): cognitive behavioural therapists

Association for Family Therapy (AFT): family therapists

British Association for Counselling and Psychotherapy (BACP): counsellors and therapists

British Psychoanalytic Council (BPC): psychoanalytic psychotherapists

UK Council for Psychotherapy (UKCP): psychotherapists

The Health and Care Professions Council: practitioner psychologists and art therapists

Association for Cognitive Analytic Therapy: cognitive analytic practitioners and psychotherapists

In addition, there is a website called Welldoing.org that offers a range of resources about depression, including a list of therapists to search.  It is recognised by NHS Choices.  The link to it can be found here.

2.    The British Association of Dermatologists has a psycho-dermatology site which can be found here.  It has a wide range of support information available via links to external sites.  This website is constantly updated and is a valuable resource to patients with skin conditions who also struggle psychologically with their disease.

3.    Support lines:

Many organisations can provide you with support in moments of crisis or feeling very low.  They include:

SANE  0845 767 8000 

Samaritans – 116 123

Mind – 0300 123 3393

Changing Faces – 0300 012 0275

A comprehensive list of the crisis services available can be found on the Mind website, via this link.

In addition, SANE provides text support.  It can be found here:

SANE Textcare

 

4.   Mindfulness.  There has been an increasing interest in mindfulness as a way of managing the feelings that having a visible difference can cause you.  You may find the book by Jon Kabat Zinn, called Full Catastrophe Living a useful starting point, although it is long.  It can be bought from Amazon here.

5. CBT online.  There is an excellent resource available online produced by Dr Chris Williams, who is  Professor of Psychiatry and Honorary Consultant Psychiatrist at the University of Glasgow.  It’s a website called llttf.com and you can access it here.

6. Mental Health Meet-Ups.  Bryony Gordon is a wonderful woman who has battled with depression for a lot of her adult life, is a journalist for The Telegraph, and set up an organisation called Mental Health Mates.  They go for walks and are a supportive, non-judgmental set of people who you may find it helpful to join.  You can find details of the walks here.

 

5.Are There Any Alternatives?

You can obtain further treatments, but none of them are available through the NHS.  The difficulty with different, alternative treatments is that there may not be a body of evidence supporting their use or effectiveness.  You therefore have to take a risk, and often an expensive risk, in following a course of treatment, and maybe be putting your health at risk as well.  Please think carefully and assess the benefits and risks of any treatment that you may pursue.

A. PCKUS and UVA/UVBtreatment10deadsea

The first is that offered by Dr Karin Schallreuter, from her clinic in Greifswald, Germany.  Dr Schallreuter previously worked in Bradford, in the UK, but moved to Germany a number of years ago.  Treatment takes place entirely in Germany and at the Dead Sea, so travel is a compulsory part of this programme.

Dr Schallreuter’s treatment is based on the theory that vitiligo is caused by oxidative stress in the skin of vitiligo patients, causing an excess of hydrogen peroxide in the skin, which then depigments your melanocytes.  She devised a way of reducing these high levels, using her psuedocatalase cream and calcium, and then by exposing patients’ skin to very high levels of natural UVB and UVA light at the Dead Sea.  There is no randomised controlled trial with evidence that supports this treatment at present.

These treatments were endorsed by the founder of the Vitiligo Society, Maxine Whitton.  Read her endorsement here.  

The last trip to the Dead Sea under Dr Schallreuter took place in 2014.  The patient has to fund the cost, and is required to be at the Dead Sea for a number of weeks.  Many aspects of your life, including diet, are controlled strictly on the trip, to get evidence that it is the treatment package that works in regimenting people’s skin, rather than what you eat when you are there, or your behaviour for example being more relaxed away from the stresses of every day life.  

Another proponent of Dr Schallreuter’s treatment is Simon Parker, whose blog is a very useful resource for people with vitiligo.  Simon is going to the Dead Sea again under his own individual programme in September this year, and has a lot of information about his trip, and the costs that can be found on this page.

There are no doctors in the UK who offer this treatment.

B.  Surgical Treatments

Surgical treatments are not available on the NHS in the UK.  

Surgical treatments revolve around taking healthy melanocytes from unaffected areas of your body and transplanting them by different techniques into your areas affected by vitiligo.

The first step before attempting surgical interventions is to assess whether your vitiligo is stable or not.  If your disease is progressing it would not make sense to try to transplant cells, as the fear is that the new cells will be immediately destroyed again by auto-immune activity.  Stable is usually taken to mean that your vitiligo has not changed or increased for a period of twelve months prior to the treatment (the NHS definition of ‘stable’). 

There are two main ways of treating vitiligo ‘surgically’

i.   Skin grafting

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Your unaffected skin is used as the source of new skin, taken from you in a piece and then surgically transplanted onto your vitiligo patches.  After a short period of time your vitiligo patches will begin to produce pigment again.  As it involves surgical treatment, it is not used for people with extensive vitiligo.   The new skin grafts start producing pigment.  

There are different methods of grafting the skin, which include mini-punch grafting,  thin split-thickness grafts and suction blister grafting.

It has a high success rate of 80 – 90%.

In the UK it is available only in private clinics, 

ii.  Melanocyte transplants
In this procedure, only the melanocytes and keratinocytes (the cells of the top layer of skin) are obtained surgically under local anaesthesia.

These are then grown – ‘cultured’ – in a lab overnight, and then transplanted into the patches of vitiligo.  

In the UK there is also a company called Avita Medical who produce a drug called ‘ReNovaCell’ which is used to speed up and enhance the process of cell culture.  See more about it here.

Transplant in this way has a high level of success – 95% – but can’t be used on extensive or unstable patches, or where a patient has patches that have been caused by the Koebner phenomenon – where cuts or pressure on the skin cause patches of vitiligo.

C.  DEPIGMENTATION:

This treatment is available on the NHS.  It is used for patients with extensive (more than 50% of your body is affected) vitiligo.

You use a topical medication to take the pigment out of your remaining pigmented skin.  

The topical medication is a form of bleach, called hydroquinone.

Because it is such a strong medication around 15 percent of patients develop contact dermatitis from using it and so are unable to complete treatment.

The duration of treatment is six to 12 months.

Just as with your vitiligo patches, your patches that are depigmented by medication are very sensitive to the sun and require sun protection forever after.

D. Tofacitinib

An arthritis drug being used in both the UK and the USA caused one woman using it in America to also re-pigment on her vitiligo patches. Tofacitinib (the generic name) is a ‘janus kinase inhibitor’, one of new kind of drug being developed to stop the chemical pathway that leads to your cells being destroyed by your own body’s cellular actions.

At the moment, there have been no trials of the drug as a re-pigmenting agent on its own, although there are plans for one to take place in America.

This is a promising area of treatment, because it stops vitiligo by stopping the auto-immune process that causes your melanocytes to be destroyed.  This might well mean that treatment is available to people who do not have stable vitiligo – the condition for some of the treatments above – and will also prevent the re-establishment of the disease after treatment has finished, which is one of the risks of phototherapy.

E.  Scenesse®

A company called Clinuvel AG is developing an adjunct therapy for phototherapy, in the form of a topical medication called “SCENESSE®”.  

SCENESSE® is a proprietary first-in-class photoprotective drug. The drug has been primarily approved for marketing authorisation under exceptional circumstances by the European Medicines Agency for the prevention of phototoxicity in adults with the orphan disease erythropoietic protoporphyria (EPP). However the company are also pursuing further studies of SCENESSE® as a repigmentary agent in vitiligo in combination with Narrow Band UVB light therapy.

The drug acts by increasing the levels of melanin in the skin; and shields against UV radiation (UVR) and sunlight. It is delivered via a dissolving implant placed under the skin, which is approximately the size of a grain of rice. Increased pigmentation of the skin appears after two days and lasts up to two months.