Winter Edition Newsletter 2010 | Vitiligo Support International

Are you wondering what treatment you should try? If you are newly diagnosed, you may be wrestling with what to do next. If you have been using a treatment, but need to try something else, you may need to step back and look at what is out there for you. In this issue, we feature the first of a two-part series reviewing vitiligo treatments, looking especially at what medical research has found about their effectiveness.

Being informed is the best thing we can do for ourselves. VSI was founded out of that belief. This past year, we continued to focus on promoting awareness and information. We strengthened the newsletter’s educational content. More people came to us for information than ever before. Our list of physicians recommended by our members continued to grow. Leading medical institutions, the American Academy of Dermatology, Mayo Clinic, Johns Hopkins University, and the National Institutes of Health, as well as the national media, referred patients to us or contacted us for vitiligo information.

Scientists also became more informed through the first announced discovery of vitiligo genes this past summer. VSI was a major contributor of patient volunteers participating in this research. This breakthrough was featured in our Summer 2010 Newsletter.

As we now move ahead, our goals remain the same: to increase our outreach into the vitiligo community, to provide educational resources to all those who come to us seeking help, to support vitiligo research and research funding, and, most importantly, to improve the day-to-day lives of those affected by vitiligo.

We hope you each had a wonderful holiday. We look forward to continuing to provide you with information and advocacy over the next year. Our best wishes to you and your family in the New Year.

Carmen developed patches of vitiligo on her wrists, face and neck. Her dermatologist posed two options, camouflage or cover-up makeups, or a topical steroid to try to re-pigment the skin. She elected to try the topical steroids. Carmen called VSI with the concern that it was taking a long time for her skin to improve. “What should she expect?” she asked. “What if it didn’t work? Was there something else?”

Carmen’s questions reflect the reality that vitiligo treatment requires patience and knowledge. By being informed, you are in the best position to be a partner with your physician, to make the best choices for you and to know what to expect. To help you make the decisions that are right for you, we are offering a two-part review of vitiligo treatments. Before we dig into each treatment, there are some factors to consider in starting treatment.

Finding the right treatment depends on finding the right physician. It is very important to find a dermatologist who is knowledgeable about vitiligo treatment and is sympathetic to your concerns. You need to know that most clinicians do not offer therapy for vitiligo. They commonly start off recommending camouflage or cover-up makeups rather than a treatment.

Vitiligo treatment requires patience and commitment on the part of both doctor and patient. Be sure your physician shares your commitment to treatment and will work with you to find the right treatment that works for you. This is especially important if you have active vitiligo, as treatment can halt its spread. Ask other people with vitiligo if they can recommend a physician or review the list of dermatologists recommended by people with vitiligo on the VSI website. Address your concerns with the physician on your first visit to learn more about the physician’s views on vitiligo and treatment approaches.

The goal of therapy is to first stabilize the vitiligo, then re-pigment the skin. Most of us with vitiligo can expect to achieve at least moderate re-pigmentation from treatment. On average, the percentage of treated skin that will be re-pigmented ranges from 25% to 65%. Some people will do better, achieving significant, near-complete, or complete re-pigmentation. Certain cases of vitiligo are more easily treated depending on their location and type. Also, in recent years doctors have been combining therapies to increase the re-pigmentation rate.

Therapy can take time, from a few weeks to several months. In many instances, getting the best results can require a several-month commitment, daily attention, and periodic physician visits. You may also need to try more than one therapeutic approach.

How long re-pigmentation lasts varies, from weeks or months to years, depending on the treatment, the degree of success achieved, and the individual. Areas that are completely repigmented often keep the pigment longer than pigment gained on an area that only partially repigmented. Since there have been few studies done tracking the long-term success of vitiligo treatment, we need more studies confirming how long re-pigmentation lasts for the various types of vitiligo following treatment.

The treatments for vitiligo include a variety of topicals, light therapies, systemic steroids, surgery, and de-pigmentation techniques. Traditional therapies include Psoralen + Ultraviolet A light (PUVA), and steroids. Modern therapies include NB-UVB, topical immunomodulators (tacrolimus, pimecrolimus), analogues of vitamin D3, excimer laser and surgery/transplantation.

In this issue, we will focus on topical and light therapies. In the next issue, we will look at those less commonly used to treat including surgery, grafting, de-pigmentation techniques, and systemic steroids.

If you have localized vitiligo (a few patches localized to one or two areas), topical treatments are typically prescribed. Generally, results of any treatment are better on the face and neck, less so on the trunk, and poorest on the extremities.

Your physician will typically start you on a high-strength steroid (class 1) (see the table listing the steroids by their strength accompanying this article). The physician may prescribe it either in a “pulse” therapy – two weeks on, and one week off – or alternate it with a lower-strength steroid or a nonsteroid topical like Protopic or a vitamin D analogue (these are discussed further on in this article). Recently, doctors have discovered that the effectiveness of a topical steroid is increased, and its potential for side effects are reduced, when it is used in combination with calcipotriene, a vitamin D analogue, or with an immunomodulator such as tacrolimus or pimecrolimus. This form of therapy is relatively inexpensive and easy to use at home.

In adults with recent onset of localized vitiligo, treatment with a high-strength topical steroid is often used for one to two months, and then slowly tapered to a lower-strength preparation in order to avoid any side effects. An alternate topical can also be tried if the first topical doesn’t work. The physician will allow a period of rest for the skin to repair in between the weeks using the steroid. This could look like three weeks on, one week off, etc. Ideally, it would be two or three weeks on the steroid, then two or three weeks on a non-steroid topical. Generally, treatment is discontinued if there is no clinical improvement following three to six months of therapy and another treatment is started.

Topical steroids are considered to be most effective on small, newly de-pigmented areas, especially those on the face and neck, areas which respond best to all therapies. Potent topical steroids can be used on the face, pulsed for short periods and allowing adequate time for the skin to rebound, with ultra-potent steroids reserved for the body.

Reports have also been published showing that combinations of topical steroids with excimer laser and NB-UVB seem to be more effective than steroids alone. (There is more information on excimer laser and NB-UVB further on in this article).

Topical steroids are moderately effective but they do not work in everyone. Studies have shown them to be effective in only 57% of adult patients and only 64% of childhood vitiligo patients. Long-term follow-up of patients treated with topical steroids has been limited; therefore, it is difficult to ascertain their long-term efficacy.

Their potential for adverse side effects also limits their usefulness as a long-term therapy. As these topical preparations can cause side effects, the doctor will monitor you closely for skin thinning and skin streaks or lines.

We do not know the specific time that is excessive for continuous use of topical steroids. Generally, if your physician recommends you use a topical steroid for more than two months, you should ask him or her to help you learn how to detect any adverse skin reactions that might develop from the steroid. (You can read more about the topical steroids and their side effects in “What’s On Your Mind” in this issue.)

Calcipotriene (a prescription vitamin D analogue, also known as calcipotriol) has been studied with mixed results in treating vitiligo. Used as a single therapy, calcipotriene offers little or no treatment benefit. However, several studies have shown that calcipotriene works well combined with topical steroids. In other words, calcipotriene plus a topical steroid is superior to the topical steroid or calcipotriene alone.

One such study done by doctors at St. Luke’s Roosevelt Hospital Center in New York showed that they were able to re-pigment vitiligo affected skin using calcipotriene and topical steroids together, even in those patients who were previous topical steroid failures. In their study using 12 long-time vitiligo patients, 83% of the patients responded to therapy, with an average of 95% re-pigmentation by body surface area. Four of the patients who responded had previously failed trials of topical steroids alone. Eyelid and facial skin responded best to this therapy. All of the patients had re-pigmentation. None of the patients had adverse reactions to the treatment. More studies need to be done to confirm this finding, as studies to date using this combination therapeutic approach have involved only a limited number of patients. However, this is a promising approach.

The topical immunomodulators, pimecrolimus or tacrolimus, may be recommended by physicians as alternatives to the use of a highly potent topical steroid in view of their better short-term safety profile. (Their use is currently limited as they are not approved by the Food and Drug Administration (FDA) for treating vitiligo. This generally means that insurance coverage can be difficult to secure. Some insurers are tougher than others, but with persistence, many times it will be covered.)

Studies using tacrolimus and pimecrolimus show comparable efficacy to high-strength topical steroids in treating vitiligo with the advantage of fewer side effects. Topical immunomodulators also seem to work well in combination with other therapies. They appear to be a reasonable option and alternative to reliance on topical steroids.

Tacrolimus
(sold as a prescription under the brand name Protopic, or as Tacroz Forte in India)…

Though tacrolimus is not officially approved for the treatment of vitiligo, reports in medical literature indicate that at least on a short-term basis, it is used both effectively and safely, particularly for vitiligo located on the head and neck. One such case report follows a 10-year-old African-American boy using 0.1% tacrolimus ointment who experienced good facial re-pigmentation in 4 weeks and complete re-pigmentation in 2 months. He maintained re-pigmentation after 6 to 9 months of follow-up, even with discontinuation of treatment. Similar results were reported with two adults. None of the patients had any local adverse effects, including itching or inflammation.

One such case report follows a 10-year-old African-American boy using 0.1% tacrolimus ointment who experienced good facial re-pigmentation in 4 weeks and complete re-pigmentation in 2 months. He maintained re-pigmentation after 6 to 9 months of follow-up, even with discontinuation of treatment. Similar results were reported with two adults. None of the patients had any local adverse effects, including itching or inflammation.

Another study showed that treatment with 0.1% tacrolimus over 24 weeks led to good re-pigmentation in 68% of the patients being treated. Adding the excimer laser to the tacrolimus has been reported to increase its efficacy.

The risks and side effects of tacrolimus are not entirely known. A black box warning was added by the FDA to Protopic (the brand name of tacrolimus) in 2005, warning that there had been several reported cases of lymphoma or skin cancer following its use. Many doctors and institutions, including the American Academy of Dermatology, dispute these findings, arguing that the numbers of cancer and lymphoma cases reported are no higher than would be seen in the general population.

Though pimecrolimus is also not approved by the FDA for use in treating vitiligo, it has been studied, though less than tacrolimus, and reported to be effective in treating facial vitiligo. A study using pimecrolimus cream 1% reported a 75% improvement in 8 patients using the cream on their facial vitiligo. Pimecrolimus has also been reported to be effective with NB-UVB and excimer laser on facial lesions. (There is more information on NB-UVB further on in this article.)

Pimecrolimus has also been found to be as effective as topical clobetasol (a high-strength topical steroid) in treating other areas of the body, including the trunk and extremities. The only side effect noted with pimecrolimus was burning. The number of patients tested has been small, so there is a need for more research to further refine these findings.

Topical steroids may ultimately be replaced by topical immunomodulators, which display comparable effectiveness and fewer side effects. The long-term risks of immunomodulators are not known, however. Studies have been limited on these drugs, as tacrolimus ointment 0.1% and 0.03% and pimecrolimus cream 1% are approved only for treating atopic dermatitis in adult patients and pediatric patients over 2 years of age. If you are interested in trying one of these immunomodulators, discuss this line of treatment with your physician and your insurer.

There are many over-the-counter (OTC) and prescription tar products sold for treating various inflammatory skin diseases such as psoriasis. One of these, prescription V-Tar, sold primarily to treat facial vitiligo, has been reported to be able to produce re-pigmentation within a several-month period in about 30% of the patients who use it, and it is especially effective in children. V-Tar is a 30% standardized water soluble coal tar that also contains natural anti-inflammatory agents, skin conditioners, and antioxidants. It will not stain the skin, and its once weekly application is convenient for many patients.

One physician reports that the average patient with facial vitiligo will obtain 25% re-pigmentation after 10 weekly treatments and many patients re-pigment completely after 30-40 applications. He recommends alternating on non-tar days with hydrocortisone cream 2 ½% for the face and a fluorinated steroid for the body.

Another topical sometimes used is pseudocatalase, also called Pcat for short. It is a prescription cream that is applied twice a day and is purported to reduce epidermal hydrogen peroxide in vitiligo-affected skin, found to be in higher levels in those with vitiligo. Pcat is usually prescribed in combination with NB-UVB therapy. Medical opinion has been mixed. The most recent randomized double-blind controlled trial did not find pseudocatalase to be effective. The authors found that the use of the American version of the pseudocatalase cream with NB-UVB was not superior to the use of a placebo cream with NB-UVB. (To get the original formula developed by a German physician, one must see her in Germany or England for a prescription. Except for the initial visit and occasional follow up visits, the prescription can be mailed anywhere.)

An excimer laser is basically a highly-concentrated beam of UV light, using the 308 nm portion of the spectrum, directed at vitiligo spots or patches, without affecting the pigmented skin around them. Due to the small (targeted) size of the laser beam, this therapy is only used on small areas. This treatment has the advantage of requiring no medications, and has virtually no side effects; many dermatologists are offering excimer laser treatment in their offices. Recently approved by the FDA for vitiligo treatment, the treatment is more expensive than other methods and often not covered by insurance.

In two studies the excimer laser achieved 30% to 75% good to very good responses (especially in the face) without causing side effects. In comparison to NB-UVB, excimer laser achieved significantly better results after 10 treatment sessions in one study. In several other studies, excimer laser showed less success than topical steroids combined with NB-UVB. Only with a greater cumulative dose were good responses achieved. The excimer laser can be effective on the face in combination with a topical immunomodulator.

Because laser treatments are expensive, they are typically only used on stable vitiligo, because when the vitiligo is active, there is a greater chance of pigment being lost afterwards. Hands and feet are often not treated with laser because it is less effective there. Potential side effects include burning. Localized lesions of vitiligo are treated twice weekly for an average of 24-48 sessions.

Generalized vitiligo is characterized by scattered patches distributed widely over the body. It is generally treated with light therapy, which can include NB-UVB, broad band ultraviolet light (BB-UVB) or photochemotherapy (psoralen + UVA light, known as PUVA). Various topicals can also be used with the light. Systemic steroids are used to stabilize fast, wide-spreading vitiligo.

NB-UVB phototherapy is generally the first-line therapy used to treat vitiligo covering more than 20% of the body. NB-UVB uses the portion of the UVB spectrum from 311-312 nm. This range has been found to help stimulate pigment cells to reproduce melanocytes in less time than it takes to burn the skin. Light therapy has a suppressive effect on the immune system, so treatment of the entire body with light therapy could potentially provide enough suppressing effect to stabilize active vitiligo and prevent new areas of depigmentation.

It is considered the most effective treatment with the fewest side effects and more effective than broad band UVB (BB-UVB); PUVA is the second best choice. Currently, it is the gold standard treatment in patients with moderate–severe vitiligo. It is well tolerated in both children and adults.

One study showed that after 48 treatments, 64% of patients in the NB-UVB group showed more than 50% improvement in body surface area affected, compared with 36% of patients in the PUVA group. Other studies have reported similar results. Studies have also shown that NB-UVB has a better color- matched re-pigmentation as well as a lower incidence of side effects.

NB-UVB seems to provide a prolonged re-pigmentation for some portion of patients. One study reported 16 of 31 patients treated with NB-UVB experienced more than 75% stable re-pigmentation for two years after stopping therapy of up to one year. Length of treatment time varies from 6 to 24 months and a maximum of 12 months is recommended in treating children.

The efficacy of NB-UVB may be enhanced with topical tacrolimus ointment. One study reported that NB-UVB combined with tacrolimus was 25% more effective than NB-UVB alone. Also, the study authors found that less UVB had to be used to achieve the therapeutic benefit. No significant adverse side effects were reported with the combined approach.

Studies differ as to the effectiveness of the combination of UVB and calcipotriene. One study showed no increase in efficacy, citing the fact that most of the calcipotriene is degraded by UV irradiation. Another study showed that 9 of 17 patients with symmetrical vitiligo had a better response on the side treated with NB-UVB and calcipotriene when compared with NB-UVB alone, following a number of treatments ranging from 29-114.

PUVA is a form of phototherapy using long wave UVA light in combination with a photosensitizing pill, psoralen. As the psoralen remains in the eye lens for a while after treatment, patients must wear sunglasses to protect their eyes against the sunlight UVA for 24 hours after taking the tablets. It is generally considered a less effective therapy than NB-UVB. A retrospective analysis over ten years showed that 60% of the patients receiving PUVA experienced 30-90% re-pigmentation; 8% of patients achieved over 90% re-pigmentation.

The effectiveness of PUVA seems to increase when calcipotriene is combined with it. Two randomized placebo-controlled trials showed significantly more rapid and strong re-pigmentation for combined PUVA and calcipotriene therapy. It has been reported in one study that calcipotrenel/PUVA combination is more effective than PUVA alone. They cited that 63% of lesions treated with calcipotriene/PUVA resulted in complete re-pigmentation, compared with 15% of lesions treated with PUVA alone.

For people who cannot go to a facility with a UVA light box, the doctor may prescribe psoralen to be used with natural sunlight exposure. The doctor will monitor through scheduled checkups.

Topical PUVA often is used for people with a small number of depigmented patches. It is also used for children 2 years old and under who have localized patches of vitiligo. The two major potential side effects of this therapy are severe sunburn and blistering, and occasionally hyperpigmentation, or excess darkening, of the outer edge of the treatment area. Hyperpigmentation is usually temporary and generally indicates a good response to the treatment.

Generally, use of topical steroids in widespread vitiligo is considered impractical because of the greater risk of associated adverse side effects due to the significant amount of skin that would be treated. However, there is some limited evidence that very potent or potent (class 1 and class 2) topical corticosteroids can work to re-pigment vitiligo-affected skin in adults on a short-term basis.

For generalized symmetrical types of vitiligo, topical clobetasol used over 2-6 months was shown to re-pigment to some degree. There is weak evidence for clinically meaningful re-pigmentation with lower-strength topical steroids used alone. The combination of topical steroids with other therapies proved more effective in this form of vitiligo as well. A study found the medium-strength topical betamethasone with calcipotriene was better than betamethasone alone over a 5-10 week period. The combination of a medium-strength topical steroid with UVA used over 9 months was much more effective than the steroid used alone.

Childhood vitiligo is generally responsive to treatment with one exception. This exception is segmental vitiligo (SV), a type of vitiligo more prevalent in children. It tends to be less progressive than other types, but has been more resistant to therapy. Segmental vitiligo begins most frequently during early childhood and occurs in approximately 20% of children with vitiligo; only 5% of adults develop segmental vitiligo. This form is most effectively treated with surgical therapies. (Segmental vitiligo usually has an early onset in life, initially spreading rapidly to a confined area, and then remaining stable. The course of the vitiligo can arrest and remain unchanged for the rest of the person’s life.)

For many years, children under 18 with non-segmental vitiligo (NSV) would be treated with a class 1 or class 2 topical steroid, or, for children under the age of 10, with a milder steroid to minimize risk. However, a growing trend among physicians is to use topical tacrolimus or pimecrolimus as an alternative to the steroids in view of their better short-term safety profile. Depending on the child's age, NB-UVB therapy is generally reserved for children with widespread vitiligo or with localized vitiligo associated with a significant impact on the child's quality of life.

One group of researchers, however, reported that they found in their review of 101 children with vitiligo that high-strength topical steroids can be used effectively in children. The study reported that high-potency topical steroids were effective in re-pigmentation of vitiligo lesions in 64% of the children who had a mean age of 7 (ranging from 2 to 10 years). They also did not find them to pose any greater risks or side effects than would be found with moderate-strength topical steroids.

Any use of topical steroids in children requires ongoing and careful monitoring to minimize and avoid side effects, especially if the steroids are being used on the head and/or neck area. While topical steroids can be very effective, their potential for side effects requires careful monitoring.

Tacrolimus is an alternative to topical steroids that has been tried in children. One study looking at 57 pediatric cases found that overall that 84% of the children responded at least partially to treatment with tacrolimus. They found a mean re-pigmentation rate of 36% of non-facial vitiliginous areas and 50% regimentation of lesional skin on the head and/or neck. The re-pigmentation rate was the same for patients who had vitiligo for 5 or more years as for those who had it for less time. (Re-pigmentation of patients with long-term vitiligo can be more difficult to achieve.) In the study, 86% of patients with segmental vitiligo responded to tacrolimus ointment, especially those with facial involvement (94%).

Topical immunomodulators could be a safe and effective alternative to topical steroid therapy or used in combination with steroids. We do not know the long-term risks of using these immunomudulators, but a pediatric vitiligo specialist, Dr. Nanette Silverberg at St. Luke’s Roosevelt Hospital Center in New York City, recommends a cyclic approach to therapy to minimize side effects and preserve clinical effectiveness. She recommends topical agents be alternated every 6-8 months until achievement of maximal response. She feels that cyclic therapy and early disease intervention can lead to good cosmetic outcomes, particularly in localized disease.

The topic of insurance is relevant, as for most of us whether a treatment is covered by insurance will often make the difference as to whether we can use it. Not all the treatments described here are covered by Medicare and private insurance. As mentioned earlier, Medicare does not cover topical immunomodulators for vitiligo treatment as they are not officially approved by the FDA for use in treating vitiligo, and private insurance coverage for this therapy can sometimes be difficult. However, appeals to insurers have frequently been found to be successful in securing coverage. Excimer laser for vitiligo is not covered by Medicare and may not be covered by private insurance.

Insurance coverage for vitiligo can vary between plans. However, if you are denied reimbursement for a vitiligo therapy, you should always appeal any rejection with the help of your physician. Vitiligo patients have reported being successful in reversing the original finding and getting reimbursed. There are examples of this type of successful appeal on the VSI message boards.

More therapies are needed for vitiligo and also more research into which of the existing therapies work best over the long-term. Vitiligo research has increased and we are learning more about the underlying mechanisms driving the disease. We need to know much more, but meanwhile we hope this article helps you make the best choices for yourself. At VSI that the more informed we as patients are, the more we are in control and make the right choices. Write us if we can answer any questions you may have from this article and we will share those questions and responses with our readers in coming issues.

Highlights of recently-published medical
articles on vitiligo and its treatments

International team of researchers has reported evidence for three more candidate genes to be linked to generalized vitiligo (GV).

The team, headed by Dr. Richard Spritz of the University of Colorado, analyzed a genome-wide data set (comprising 1,392 cases and 2,629 non-vitiligo controls) to specifically test whether all 33 GV candidate genes that had been previously suggested to be related to GV were actually linked to GV. They found evidence that three of the genes were linked with GV but none of the others. As this is by far the largest association study of GV candidate genes ever carried out, these findings further clarify our understanding of the genetic underpinning of vitiligo. Previous individual candidate gene studies were on a smaller scale, and, therefore, limited statistical analysis. The discovery of these three new genes follows the team’s earlier discovery of 13 confirmed genes for GV.

Stanca A. Birlea, Ying Jin, Dorothy C. Bennett, Deborah M. Herbstman, Margaret R. Wallace, Wayne T. McCormack, E. Helen Kemp, David J. Gawkrodger, Anthony P. Weetman, Mauro Picardo, Giovanni Leone, Alain Taieb, Thomas Jouary, Khaled Ezzedine, Nanja van Geel, Jo Lambert, Andreas Overbeck, Pamela R. Fain, and Richard A. Spritz. “Comprehensive Association Analysis of Candidate Genes for Generalized Vitiligo Supports XBP1, FOXP3 and TSLP.” Journal of Investigative Dermatology advance online publication, 18 November 2010; doi:10.1038/jid.2010.337.

Editor’s Note: The discovery of the first 13 genes by this team and Dr. Spritz was reported in the Summer VSI newsletter. Vitiligo Support International is a major contributor of patient volunteers for this research. We thank our members who have participated for playing this important role in moving vitiligo research forward.

A group of dermatological researchers suggests that monitoring vitamin D levels in patients with vitiligo vulgaris may identify individuals at greater risk for secondary autoimmune diseases.

25(OH) Vitamin D insufficiency and deficiency, both in childhood and in adulthood, have been associated with a variety of autoimmune diseases. The authors of a recent research study identified a subset of patients with both vitiligo and 25(OH) vitamin D deficiency. One-third of these vitiligo patients were found to have one or more additional autoimmune diseases along with their vitiligo. These diseases included Hashimoto thyroiditis, Graves’ disease, systemic lupus, Sjogren’s syndrome, alopecia areata, and inflammatory bowel disease. (June 2010 Journal of the American Academy of Dermatology, “A Pilot Study Assessing the Role of 25 Hydroxy Vitamin D Levels in Patients with Vitiligo Vulgaris”, Jonathan Silverberg, MD, PhD, MPH, Arnold Silverberg, MD, Edmond Malka, MPH, CPH, CSci, CChem, MRSC, FAIC and Nanette Silverberg, MD.)

National Institutes of Health- funded study conducted by Harvard Medical School researchers points to a potential role of Vitamin D in autoimmune disease prevention, but prospective interventional evidence in humans is still lacking.

Investigators reviewed over 1400 potentially relevant studies. They observed that the “critical window” for vitamin D intake or level to affect the risk of developing an autoimmune disease is not known and may vary according to disease; also, maternal intake during pregnancy, early life intake, and intake during different phases of adulthood may not be equally relevant to different diseases. Possible health benefits of vitamin D may be assisted by other components in dairy products, which are the main dietary sources of vitamin D. Disentangling independent effects of vitamin D and calcium on risk of autoimmune disease in observational studies is difficult due to their high correlation in countries, including the U.S., where milk is fortified with vitamin D. They recommended a prospective study to study the effects of moderate-to-high dose vitamin D supplementation to eliminate this problem. They recommended a high-quality, double-blind, randomized controlled trial with a large sample size and long duration. (Seminars in Arthritis and Rheumatism, “Does Vitamin D Affect Risk of Developing Autoimmune Disease: A Systematic Review,” Martin A. Kriegel, MD, JoAnn E. Manson MD, MPH, DrPH, and Karen Costenbader, MD, MPH, Available online November 2, 2010).

French researchers better defined and compared the clinical features of nonsegmental vitiligo (NSV) and segmental vitiligo (SV) in children.

SV occurs in a minority of patients and is thought to be more frequent in children. There are limited data regarding the differences between these two forms. NSV was found to be associated with a higher number of lesions and a larger body surface area of involvement. In NSV, a higher incidence of the Koebner phenomenon (spread due to skin trauma) was found, as well as a more frequent progression of the disease within one year. Additionally, thyroid abnormalities and hyperpigmented rims around vitiligo were seen exclusively in NSV. Interestingly, only NSV was found to be associated with autoimmune manifestations in the children studied. The researchers proposed that NSV and SV had different causes, with NSV being an autoimmune disorder; whereas SV results from dysfunction of sympathetic nerves in the affected area. (June 2010 Journal of the American Academy of Dermatology, “Segmental and Nonsegmental Childhood Vitiligo has Distinct Clinical Characteristics: A Prospective Observational Study,” Juliette Mazereeuw-Hautier, MD, PhD, Sophie Bezio, Emmanuel Mahe, MD, Christine Bodemer, MD, PhD, Catherine Eschard, MD, Valeries Viseux, MD, Christine Labreze, MD, Patrice Plantin, MD, Sebastien Barbarot, MD, Pierre Vabres, MD, Ludovic Martin, MD, Carle Paul, MD, Ph.D., Jean-Philippe Lacour, MD and the Groupe de Recherche Clinique en Dermatologic Pediatrique.)

Editor’s background comment: When progression, prognosis and treatment are considered, vitiligo can be classified into two major clinical types: segmental and nonsegmental. Segmental vitiligo (SV) usually has an onset early in life and tends to spread rapidly at the onset over the affected area, usually confined to one side of the body, then remains stable thereafter. Depigmented patches can persist unchanged for the life of the patient. More than half the SV patients have patches of white hair. Nonsegmental Vitiligo (NSV) includes all types of vitiligo except segmental vitiligo, such as focal vitiligo (one area of vitiligo) and the more common generalized vitiligo, which is generally progressive and often mirrors on both sides of the body. Also, while it is uncommon, a person with SV can later develop NSV.

Sponsored by Nanette B. Silverberg, MD
Departments of Dermatology,
St. Luke's-Roosevelt and Beth Israel Medical Centers, New York, NY

Dr. Silverberg is conducting a survey to review medical, genetic,
psychological and nutritional factors that may cause or exacerbate vitiligo.

Individuals with vitiligo that have been previously diagnosed by a physician
are welcome to contribute to this survey.
The survey will not include any personal information that may identify you to the public.

Click Link to Select the Appropriate Survey Below

Participate in this Survey as an Adult with Vitiligo
Adult Vitiligo Survey

To Participate in this Survey For Your Child
Survey For Your Child

Vitiligo Genetics Study
Needs Additional USA and Canadian Patient Volunteers

Scientists with the international VitGene Consortium project spanning 18 countries are working to understand the biology of vitiligo in order that more effective vitiligo treatments can be designed. We thank the thousands of vitiligo patients and unaffected "controls" who have already participated. Your involvement has led to real breakthroughs in our understanding of vitiligo, and has opened new doors to the development of potential new treatments.

Thus far, our studies have focused principally on Caucasians (whites), as this is the only group from whom we have gotten enough participation. In addition to more Caucasian volunteers, we need many more non-Caucasian (non-white) patients and unaffected controls, to extend our studies to other groups. Through your participation, you will help to ensure that future discoveries and treatments will apply to minority groups as well as to Caucasians.

If you are a Caucasian (white) or non-Caucasian (non-white) with vitiligo from the USA or Canada, your participation as a research volunteer is vitally needed. We particularly need volunteers of USA and Canadian Caucasian, Hispanic/Latino, African-American, east Asian, and Indian/Pakistani origin, as well as unrelated people (non-blood relatives) without vitiligo (controls).

Please complete the questionnaire below then email directly to Dr. Richard Spritz at the University of Colorado School Of Medicine using the email address provided at the end of the questionnaire. Your personal information, by law, will be kept private and will not be sold or disclosed. Join with us to work for a vitiligo-free future!

Q. My doctor has prescribed topical steroids for me to use to treat my vitiligo. Are they the same as anabolic steroids?

A. No, they are not the same. Anabolic steroids are synthetic derivatives of testosterone that were developed as adjunct therapy for a variety of medical conditions. They mimic the effects of the male sex hormones. Today they are most commonly used to enhance athletic performance and muscular development. Long-term or excessive doses of these steroids can cause harmful changes in cholesterol levels, acne, high blood pressure, liver damage, and dangerous changes in the structure of the left ventricle of the heart.

Topical steroids used to treat vitiligo and other skin diseases, and less commonly used systemic steroids, are in a different family of steroids called corticosteroids. Corticosteroids are used to stop the inflammation process. Inflammation protects us against tissue damage. However, inflammation can persist long after the biological injury has been repaired and cause tissue damage anyway. Corticosteroids can dampen or stop this chronic inflammation.

A. Long-term use of steroids, especially those that are high-strength, can lead to side effects. Probably the most well-known side effect is thinning of the skin, which sometimes results in permanent stretch marks. Fine blood vessels may swell and become prominent under the skin surface, again a possibly permanent change. The skin may bruise more easily, become more susceptible to infection, and may experience a temporary lightening where applied. Topical steroid use can also lead to tachyphylaxis, a condition where the skin no longer responds to the medication. If used on large areas of skin for prolonged periods of time, the steroids can be absorbed into the bloodstream and suppress the adrenal glands.

In order to best manage their use, the numerous topical steroid products come in different strengths, ranked class 1, the most potent, to class 5, the weakest (see accompanying Topical Steroid Chart). Physicians will use the steroids in different ways to maximize effect and minimize side effects. Some physicians may start treatment with a high-strength topical steroid, then taper to a moderate one, varying the regimen to limit side effects.

A physician may reserve weaker formulations of topical steroids for those thin-skinned areas on the body (i.e., eyelids, facial skin, body folds, armpits, groin, genitals, and anal area) where there is greater chance for the body to absorb the topical steroid and thereby be overexposed to the steroid. However, many, if not most, doctors who are knowledgeable on vitiligo, will prescribe the class 1 – Super Potent steroids for those areas, using them intermittently with Protopic or another topical or just intermittently alone. As long as care is taken that the steroids are not used too long (causing permanent damage), the thinning skin will heal or rebound in a fairly short time once the application is ceased.

Q. Is the over-the-counter hydrocortisone a topical steroid I can use for my vitiligo?

A. The super potent steroids are most effective in treating vitiligo as opposed to Hydrocortisone which is very weak and ineffective

Q. I am worried about my child using topical steroids. I have heard about absorption. What should I do?

A. Moderate-high potency topical steroids are effective in children with vitiligo, but can be associated with systemic absorption. One Canadian study of 70 children showed that 64% of the children treated had repigmentation of their lesions, with 24% showing no change and 11% who became worse. Systemic absorption was observed in 29% of the patients. Localized side effects were noted in 26% of the patients.

Physicians will limit children’s exposure to steroid effects by alternating days of use of the medication, tapering the medication down to a lower-strength version, or alternating between steroid strengths. Another popular option is to alternate the steroid with either another topical such as calcipotriene or with a topical immunomodulator like tacrolimus (Protopic). The physician will also closely monitor the child for the appearance of any side effects.

A special consideration when using these medications in children is the percentage of the body being treated. Because a child’s body is smaller, one could potentially be treating a higher percentage of the body than in an adult. The greater the treatment area, the higher the absorption potential. So the doctor may use the higher-strength steroids on some areas and a lower-strength steroid on larger areas being treated.

Q. What about systemic steroids, taking steroids by mouth or injection? Wouldn’t that work faster and better?

A. Sometimes a physician will inject a resistant lesion with a steroid to treat that particular lesion. A physician may administer small doses of a steroid (such as prednisone) orally or by injection intramuscularly for a short time to stabilize the vitiligo if it is spreading rapidly across the entire body with large areas of de-pigmentation. Though there have been a few studies demonstrating the effectiveness of low-dose systemic corticosteroids in arresting the progression of vitiligo and re-pigmenting the skin, systemic steroids are generally avoided in the treatment of vitiligo because of potentially serious side effects. Also, when systemic steroids are discontinued, there can be a flare-up of the disease.

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