Friday Facts

We’ve been running our Friday Facts feature about different aspects of vitiligo on our Facebook group and this is the latest post about research.

Friday Facts:

What research should I trust?

Whilst vitiligo doesn’t yet have a cure, there are certainly a number of studies taking place every year looking at different aspects of our condition, and its treatment.

Research into vitiligo falls roughly into three areas: what causes vitiligo; what treatments slow or stop the vitiligo and what treatments stimulate re-pigmentation.

For example, this year the HI-Light trial will report on its findings on a particular treatment for vitiligo.  This UK study, that some of you may have taken part in, was looking at treatment with a hand-held UVB device, alongside use of a cream to enhance the effects of the UVB.  Part of the trial’s interest to vitiligo patients in the UK would be to see results that meant the NHS developed a programme whereby we could have these hand-held devices at home for treatment of small patches, say on the hands or face, meaning less time taken up with treatment away from work, school or university or home life.   

The trial was a randomised, controlled trial, and if you are looking at a piece of research and seeing if you should trust the results, perhaps to make a decision about your treatment or making a lifestyle change, this is what you should be looking for.

What does Randomised and Controlled mean?

  • Randomised or Random Allocation

This means that if you volunteered to take part in a study, you would be randomly assigned to a different group within the trial, and not be told what group you were in.  

It means a study in which a number of similar people (say all with stable, non-segmental vitiligo) are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention, without taking any similarities or differences between all the people volunteering into account.  This randomisation means that each individual has the same chance of having each intervention.

There might be three groups in the trial, which would comprise, for example, those receiving the active treatment, those receiving an inactive treatment or a placebo and a comparison treatment.  The researchers wouldn’t therefore choose to put all the people with vitiligo on their face into the active treatment group, because they believed that that group would respond better to the active treatment, but the volunteers would be assigned into a group that was chosen for them by, perhaps, a computer-generated random sequence.

The groups are followed up to see how effective the experimental intervention was. Follow up in vitiligo trials tends to look and see how long the re-pigmentation lasts.

The results are then measured at specific intervals (in the HI-Light trial this was at three, six and nine months.

This method is also used to reduce bias.  So, for example, vitiligo researchers might be pre-disposed to believe that facial vitiligo would respond better to treatment and look for that result being replicated in their trial.

  • Numbers

A study should have at least twenty people in it for the results to be trustworthy – otherwise the risk is that the treatment effects that you see are random chance. 

You will very often see people saying that they tried different things which they claim cured their vitiligo or caused them to re-pigment.  You are very welcome to try anything that gives you some feeling of hope or control over your vitiligo however one person’s claims does not make a reliable result.  

Reliability

This refers to the ability to get the same or similar result each time a study is repeated with a different population or group.  This is assessed by complex statistical calculations. 

  • Published Research

Research results are published in medical or scientific journals where they are peer-reviewed and subjected to comments and questions. If someone says they have a product that treats vitiligo effectively and they’ve never published their study, that raises questions about the effectiveness of the research, or that they are trying to keep the results from the public or other scientists because the results didn’t support their theory.  The process of designing and carrying out a randomised controlled trial is very rigorous in the UK and subject to many regulations, and ethical considerations. 

  • Longitudinal studies 

When looking at the effect of something like diet on your vitiligo, what’s called a longitudinal study is used. These are very difficult to maintain because you are asking people first to control strictly an aspect of their daily life, for example excluding or including something in their diet, secondly to be consistent about that over a long period and finally, to be completely honest about it!

  • Anecdotal evidence 

If one or two people say that they have cured or effectively treated their vitiligo with some (unusual or otherwise) treatment this is just someone’s account of what happened to them and may well not be true of a group of people who then follow the same treatment.  There is no proof that this treatment works beyond one person’s anecdote, and no control of other variables in their life.  For example, someone may say that they started taking a supplement in May one year, and saw pigment patches coming back on their face.  This may actually relate to them starting to walk to work again after the winter, and getting incidental sun exposure, rather than the supplement itself, but we have no control of those variables so cannot tell.

Because vitiligo can be so distressing, we all respond with interest to news about new trials, or to people’s claims.  It is better to wait for a properly conducted trial to be done before you make any changes to treatment, and to follow reputable clinical resources to ensure the information you use is the best possible.

One of the best sources of information is the Cochrane Review, which does all the work for you in analysis of information from trials and tells you what shows a positive effect. It can be found here:
https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

  • Should I take part in research trials?

Yes, please do!  The more of us willing to take part, if we are eligible, means the more likely that meaningful results will be found for us all.  

https://www.cochrane.org/CD003263/SKIN_treatments-vitiligo

2018 Bulletin : Treatment, supplements, MeetUps and more

I’m afraid that last year passed in a bit of a blur, and there weren’t many newsletters written.  However we also :

Took part in the British Association of Dermatologists’ Research Sub-Committee – I’m going to call them the BAD from now on!;

Started running MeetUps for vitiligo, every month, in London and elsewhere;

Got Vitiligo Support UK recognised by NHS Choices, so that we’re now listed as a source of support on their website!;

Attended as the patient representative at the UK Committee for Translational Research (UK TREND) at the BAD;

Took part in the Patient Engagement Intiative at the BAD alongside the amazing Amanda Roberts from Nottingham Support Group for Carers of Children with Eczema;

Built up our Facebook group, Twitter feed and started out on Instagram as well – it’s really good to connect with everyone with vitiligo via social media and to share news and experiences with you there

Became involved in the Centre for Appearance Research’s latest project on Acceptance and Commitment Therapy, coming soon to a phone screen near you!,

Met the amazing Lotte Bateson and spoke at her conference, Skin Matters, alongside John Warne from Psoriasis Help and Simon Oates from Mind & Skin, and

Contributed to the Phototherapy Guidelines now published by the BAD, and are currently working as one of the patient representatives on the Treatment of Vitiligo Guidelines.

So, this is the first of hopefully several newsletters for 2018 – though worried that just saying that means that a tsunami of other things are now heading our way preventing us from writing….

This Newsletter

 

In this newsletter we’re going to cover:

Treatment update

Supplements 

MeetUps

Thyroid Disease

TREATMENT

In February 2015 the Cochrane Review undertook a systematic review of all research studies into vitiligo.  Whilst this feels like a while ago now, the overall message from the review bears repeating, especially as it is a message that we’re all familiar with, having vitiligo, and maybe other chronic diseases.

One of its important messages is to acknowledge the difficulty in treating vitiligo.  Part of this difficulty comes from a lack of complete understanding as to what causes the disease (although both genes and auto-immunity are likely to be involved), and in part because it is a tenacious disease in itself.  

Therefore, if a treatment works, the risk of your vitiligo coming back and making your re-pigmented patches white again is very high.

You can read the Cochrane Review in full by clicking on this link.

The important points to note about the Review of treatments, and subsequent studies undertaken in vitiligo, are that:

1.   NB-UVB light remains the main, successful treatment in tackling re-pigmentation of patches

2.   Light treatment can be even more successful if it is combined with another topical treatment (one you put on your skin) or oral treatment, and the study looks at the following as an treatment alongside UVB:  steroid creams, psoralen (usually with UVA), calcipotriol (a vitamin D derivative), azathioprine (an immunosuppressant) and oral prednisolone (a steroid).  All of these are only available on prescription, and should not be taken unless under hospital supervision.

3.   If you are offered light treatment, do make sure you have a conversation with your dermatologist about the possibility of combining the treatment with a topical one as well – take a look at the Cochrane Review for the evidence to support this.

4.   There was some evidence that taking Gingko Biloba orally as a supplement helped stop the spread of vitiligo, and had some success in helping re-pigmentation when used with light therapy.  As this is a product available to everyone through health shops, Amazon and some chemists, this might be worth a try yourself. I was told by a consultant that he advised patients to take antioxidants as a supplement because of the possibility of strengthening your body generally, and thus stopping the progress of your vitiligo, but there’s no clinical trial that has looked at this specific question yet.

As always hope for a cure remains high, and as a result there are two new treatments that people are watching and are interested in.  

The first is ‘Afamelanotide’ or ‘Scenesse’.  Please note that this product is not yet trialled or licensed to be used for vitiligo, and is actually a treatment for another rare skin disease called ‘ erythropoietic protoporphyria’.  

In addition, you cannot buy Scenesse from its makers, and the base ingredient, afamelanotide is not commercially available.  If you buy a product saying it contains afamelanotide or melanotan-I then this is not true, it is something else, possibly dangerous to your skin and health, and you are putting your skin at risk by using it.  

In the long term it may be that this will also prove to be a good treatment for vitiligo, but we are probably still years away from that.

The second are a class of drugs called Janus Kinase Inhibitors, or JAK inhibitors.  The action of these drugs is to stop the action of Janus Kinase enzymes which are believed to be responsible for inflammatory action in the body’s cells, specifically in the joints, causing arthritis and potentially also in the pigment cells.  There haven’t yet been large-scale trials of the JAK inhibitors, but re-pigmentation has been seen in a few patients taking the oral drug, on the face, and a proper trial is now being recruited for and initiated in the USA.  Read more about JAK inhibitors from Dr John Harris, the tireless supporter of vitiligo patients in his research and practice, here.   

SUPPLEMENTS

It’s almost impossible to eat right, every single day and meet all the targets that are set for your vitamin and mineral intake.  This section is not medical advice, but information on some supplements that you may find useful.  

With any supplement, if you have pre-existing conditions, please take medical advice before taking them, and ensure that you read and follow any printed instructions with the product.

Don’t forget that we’re still in the winter period here in the UK, when even the UK government recommend that we take a daily supplement of Vitamin D.  If you have vitiligo, cover your patches with clothing or sunscreen in the summer, and generally avoid the sun, then you should consider taking a Vitamin D supplement for the entire year.  You can get Vitamin D tablets from most chemists and on Amazon.  

If you’re read the section above then you’ll know that, alongside your Vitamin D, at least two things could be on your list.  

The first is a good antioxidant.  One example of a very powerful antioxidant is Alpha Lipoic Acid, which has a protective effect against free radical damage in your cells.  It can be found on Amazon, for example Solgar offer it for sale in 200mg vegetabs.  

Secondly, you may consider taking Gingko Biloba as a supplement.  Gingko has been used as a supplement for a long time, and is meant to improve both memory and vision, and, according to the research, may also stop your patches spreading.

Finally, it’s worth considering adding a multi-vitamin and mineral to the mix, to cover things like magnesium that you’d have to eat a lot of sardines to make up yourself naturally!

MEET-UPS

It’s been really great to meet you over the last five months, over coffee and having a chat about all things vitiligo.  One of the things that came up at our last MeetUp was the incidence of thyroid disease and vitiligo, and our Factsheet on Thyroid Disease is in the next section.  

We have more MeetUps coming across the year, the next will be in April (the March one has been cancelled), and will take place in Brighton, on 28 April.  Details of the venue will be posted in our Facebook group, on MeetUp and via Twitter and Instagram.

Come and get some support, share some of your experiences, and meet other people with vitiligo – plus get coffee!  Hope to meet you soon!

THYROID DISEASE

What is Thyroid Disease?

Your Thyroid Gland produces two substances called triiodothyronine (T3) and thyroxine (T4), in response to a stimulus from the Pituitary Gland.  T4 goes on to generate T3, and this in turn affects your metabolism and has an impact on what happens in all the cells in your body.  When the Thyroid Gland is damaged or over-stimulated for any reason, Thyroid disease follows. 

There are two types:

Hypothyroidism: this is the most common type of thyroid disease and occurs when your Thyroid Gland is under-active and cannot produce enough T3 for your body’s needs.  People with this condition must take replacement thyroxine for life.

Hyperthyroidism: this occurs when your Thyroid Gland is over-active and produces too many thyroid hormones.  People with this condition can be treated in a variety of ways, but the most common is to take an anti-thyroid medication, usually for life.

There is a table of symptoms for both diseases below.

What is the link?

Whilst it is known what happens in your skin if you have vitiligo (the disappearance of your melanocytes causes white patches of un-pigmented skin to appear), why this destruction of your pigment cells happens isn’t fully understood.

However, a lot of experts believe that vitiligo is an auto immune disease, which means that it is caused by your own body attacking your melanocyte cells.

This appears to be confirmed by a link between vitiligo and other auto immune conditions.  Amongst the auto-immune conditions associated with vitiligo is thyroid disease.

What is my risk?

If you have vitiligo, you have a 2.5 times higher risk of developing Auto Immune Thyroid disease than the general population, because of the auto-immune nature of both vitiligo and thyroid disease.

The risk of developing elevated thyroid antibodies (which is the step before thyroid disease has developed) has been found to be greater than 5 times higher than in the normal population.  In a U.K. study, patients with vitiligo were 34% more likely to have thyroid disease as well as their skin condition.

When should I take action?

Be aware of the increased risk of thyroid disease for you if you have vitiligo.  Symptoms can however be easily confused with other conditions. Use the Resources below and the checklist of symptoms that can be found here and on the British Thyroid Foundation’s website, to see if you need to see your G.P and request a blood test.

Symptoms of HYPOTHYROIDISM (under active)

Symptoms of HYPERTHYROIDISM (over active)

 

In brief, the symptoms for you to be aware of for hypothyroidism include:

  • tiredness

  • weight gain

  • depression 

  • being sensitive to the cold

  • dry skin and hair

  • muscle aches

 


In brief, the symptoms for you to be aware of for hyperthyroidism include:

  • hyperactivity

  • mood swings – such as anxiety, irritability and nervousness

  • difficulty sleeping and feeling tired all the time

  • muscle weakness

  • needing to pass stools (faeces) or urine more frequently

  • excess fats in your stools – which can make them greasy and difficult to flush down the toilet

  • sensitivity to heat and excess sweating

  • unexplained or unexpected weight loss – despite having an increased appetite

  • infertility

  • loss of interest in sex 

 

As you can see these symptoms can also be experienced with other conditions, so be aware it might not be thyroid disease causing them.

What tests are done to check?

 Your GP should be aware of the increased risk of thyroid disease for patients who already have vitiligo.

The test will be a thyroid function test.  This looks at your levels of thyroid-stimulating hormone (TSH) and thyroxine (T4) in the blood.  TSH is the hormone that automatically regulates your thyroxine and triiodothyronine in your body.

A high level of TSH and a low level of T4 in the blood could mean you have an underactive thyroid.

If your test results show raised TSH but normal T4, you may be at risk of developing an underactive thyroid in the future.  In this case, you may need to return for a repeat blood test a few months later.

If it is found that you have either condition, you will then need to take medication to correct the imbalance, in all likelihood for the rest of your life. 

More information can be found here:

British Thyroid Foundation 

NHS Choices website: hypothyroidism

NHS Choices website: hyperthyroidism

 

Hope that you all have a great 2018 – find us on Social Media as well!

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