Navigating the Dermatology System: Tips for Accessing Vitiligo Care First of all, we understand that many of patients with vitiligo have had a dismissive response from GPs over the years. That is inexcusable.
However, many GPs are hardworking caring people working under a lot of pressure, so we should start from a position of respect for the pressures on their time, etc.
To that end, this is a guide to managing your appointment efficiently and to help you gain access to the treatment that you need for your vitiligo.
In addition, if someone dismisses your skin condition as “cosmetic” or “not worth treating”, please take a deep breath and tell them that a person’s appearance affects many aspects of their life, and changes to appearance can have an impact on work, family, relationships and physical activity. Vitiligo is a disease (important that you say that rather than “condition” with your doctor) that can have an enormous psycho-social impact and also a number of other auto-immune diseases that can come with it, so dismissing it risks those diseases not being picked up promptly and also dismisses everyone with a mental health condition.
Finally, please emphasise that vitiligo is a treatable disease, and the Primary Care Dermatology Society is clear about that in its Guidelines to GPs for managing and treating vitiligo.
The following relates to adults only. If it would be helpful, let us know and we can do the same thing for children. Skip to the end if you want the summary!
HAVE HAD PATCHES FOR A WHILE BUT NEW PATCHES DEVELOPING:
It is correct that if you have had vitiligo for a period of years, those patches may well not respond well to treatment. However, ask if you can try a topical treatment (steroid or tacrolimus) anyway, and emphasise that your vitiligo is having an impact on you.
If you are getting new patches as well as your older ones, then these new patches may well respond better to treatment, so use the guidance below to ask for treatment for them.
LOOKING FOR A DIAGNOSIS OR EARLY TREATMENT:
BEFORE THE APPOINTMENT:
Prepare a very brief family history: If you don’t know of any family members with vitiligo, ask aunts/uncles/cousins to see if there is any history of vitiligo. Also ask if any family members have had:
Type 1 Diabetes
Addison’s Disease and
Thyroid disorders – hypothyroidism or hyperthyroidism.
Think about what you want from the appointment. If you would like to try treatment, or would prefer to just be monitored for your thyroid levels, be clear with the GP.
You may also ask to be referred for face-to-face counselling or online counselling. Please do ask for this if you are feeling the impact of your vitiligo, it is important to ask for help if you need it.
AT THE APPOINTMENT:
First of all, it is important to note that the PCDS is very clear that: Patients require a TFT and thyroid autoantibody screen, and must be educated about symptoms of thyroid disorders.
You do not normally need any other blood tests unless there are other conditions in your family history and you are displaying symptoms.
You should be able to book this blood test after your first appointment confirming it is vitiligo. Have a look at our Factsheet on thyroid disease in the Files area to make sure that you don’t have any thyroid symptoms to report at this first appointment.
Below is the text from the PCDS for the various treatments, and after that a recommendation of how you approach this all in the appointment.
First Line Treatments:
PCDS SAYS:
Topical treatments for thin areas of skin - face, flexures, and genitalia
Tacrolimus (Protopic ®) 0.1% ointment BD should be considered first-line, which appears to be more effective than other topical calcineurin inhibitors (ie pimecrolimus cream)
Having discussed the risks and benefits of topical steroids on thin skin, offer a potent topical steroid, e.g. mometasone 0.1% cream, in addition to tacrolimus.
To reduce the risk of steroid atrophy, apply thinly OD, initially on alternate weeks. If there are signs of atrophy (figure 33) then reduce the frequency of steroid application.
Review at 3 months.
We advise that you make sure that you make a note in your diary as to when the three months elapses and go back.
Take photographs in natural light without flash of the patches you are treating. Use our printable ruler next to the patch to mark progress if any. Take photographs every three or four weeks.
Topical treatments of other sites
For areas of your body, a general steroid cream is advised.
PCDS SAYS:
Once daily applications of a potent topical steroid, e.g. mometasone 0.1% cream, may be as effective as a super-potent topical steroid and should be considered first-line for an initial period of three-six months; response to treatment can be slow.
If there is limited response, then consider a super-potent topical steroid (e.g. Dermovate ®).
Note that the time period is 3–6 months so take photos more frequently. Make sure that you monitor, and make an appointment to review.
Consideration of referral for phototherapy, and sometimes systemic steroids
The PCDS has some facts relating to the success of phototherapy, and its impact in terms of time and convenience.
If you are at the follow up appointment and have already tried topical treatments with no success and can demonstrate vitiligo’s impact on you, make sure that you are clear you want a referral to dermatology to discuss phototherapy as an option.
Make sure that you give examples of how vitiligo has affected you, for example in reducing your access to sports, social events, relationships, intimate relationships.
Note the time requirements. This may take up to a year of treatment. Phototherapy units usually operate in the early morning, but it may still have an impact on work or home life.
PCDS SAYS:
Almost two-thirds of patients get 50% or more re-pigmentation but a prolonged course of treatment is needed (6 months in children and 12 months in adults), and relapse occurs in 75% patients within two years.
The use of phototherapy is perhaps best reserved for patients who have failed to respond to topical treatments AND who are both more severely affected by their vitiligo and are suitably motivated to attend for a prolonged treatment.
Narrow-band UVB phototherapy is the initial treatment of choice.
In summary:
In the appointment:
Give a brief family history if there is vitiligo or thyroid disease in the family.
Ask for tacrolimus for your face or genitalia; ask for the steroid cream for the body. Hands and feet may well not be treated.
Take photographs during treatment– see our Files area for more information.
Go back to a review appointment three to six months depending on the treatment after you’ve been prescribed the appropriate treatment.
At review, if there has been no success, ask to be referred to secondary care, dermatology, for a discussion about phototherapy.
Emphasise at review that vitiligo continues to have an impact on you and your daily life, and that the topical treatments have not worked, providing the photographs that you have taken.
Prepare for a wait, some areas have waiting lists of 49 months (Bristol) for dermatology appointments.
What if the GP suggests it is something else?
They may suggest that it is a fungal condition, or the impact of eczema on the skin.
Use the treatment they give you for, say, two months, and then book a review appointment if there has been no change. Say that you think that this is vitiligo and ask if you can follow the treatment steps above. If you would like to support Vitiligo Support UK in their mission to provide advocacy and support for people with vitiligo, consider making a donation through their JustGiving checkout on their website. Your contribution will help them expand their reach and offer additional support services to those in need. Remember, you are not alone in this journey. Together, we can make a difference and ensure that everyone with vitiligo receives the care and support they deserve.
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