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What is Protopic?

Protopic (Tacrolimus) is a newer medication that has is prescribed by some dermatologists for vitiligo. Protopic, an ointment made by Fujisawa Pharmaceuticals in Japan, works to down-regulate (suppress) the immune response in an area of vitiligo. Studies have shown repigmentation success in some (but not all) people who use it. Protopic ointment is currently indicated for the treatment of moderate to severe atopic dermatitis (eczema). Currently, the approved label has no specific mention of vitiligo, and the Food and Drug Administration (FDA) regulatory requirements do not support the clinical investigation or use of Protopic in vitiligo at this time. The product is available in .03% strength and the stronger .1% strength . The risks and side effects of Protopic are not entirely known, and should be discussed with your doctor. A black box warning was added to Protopic in early 2005, warning that there had been several reported cases of lymphoma or skin cancer following its use. Some doctors dispute these findings, suggesting the numbers of cancer and lymphoma cases reported are no higher than would be seen in the general population. Many experts believe that vitiligo is the result of the immune system improperly generating antibodies to one's own pigment cells, which then attack and kill or weaken such cells. Immunomodulators may inhibit immune cells (t-cells) from attacking the pigment cells.

What are Elidel, Aldara and Imiquimod? Like Protopic, these products are all immunomodulators that affect immune response. Elidel is a product called Pimecrolimus, that is similar to Protopic, but comes in a cream form. The risks and side effects of Elidel, Aldara and Imiquimod are not entirely known, and should be discussed with your doctor. A black box warning was added to Elidel in early 2005, warning that there had been several reported cases of lymphoma or skin cancer following its use. Some doctors dispute these findings, suggesting the numbers of cancer and lymphoma cases reported are no higher than would be seen in the general population. What is Pseudocatalase (Pcat)? Pseudocatalase, also called Pcat for short, is a cream, that is applied twice a day, and purported to reduce epidermal hydrogen peroxide in vitiliginous skin, found to be in higher levels in those with vitiligo. Pseudocatalase is usually done in combination with narrow band UVB light therapy. Pseudocatalase does not make the skin more sun sensitive. The original formula is only available from Germany. There have been no independent studies of Pseudocatalse to support its effectiveness. What is Ratokderm? Ratokderm is a laser technology for treating vitiligo, available in Milan, Italy. Ratokderm essentially uses a laser beam of Narrow Band UVB light to target depigmented areas. The company says that this technology allows patients to completely give up the use of drugs in treating their condition, allow a point by point treatment of their vitiligo with the laser, and, avoid the more dangerous bands of UV light. This treatment is similar to the American Excimer laser. What is an Excimer Laser? As described above, an excimer laser is basically a highly concentrated beam of UV light, directed at vitiligo spots or patches, without affecting the pigmented skin around them. Developed by Dr. James Spencer at Mt. Sinai Hospital in New York, this treatment has the advantage of requiring no medications, and with virtually no side effects. Recently approved by the FDA, the treatment is more expensive than other methods, and often not covered by health insurance, however many dermatologists are offering excimer laser treatment in their offices. What is V-Tar? V-Tar is a 30% Standardized water soluble coal tar product which also contains natural anti-inflammatory agents, skin conditioners, and antioxidants. V-Tar has been used successfully in many patients with vitiligo and other hypopigmentary disorders. It will not stain the skin, and its once weekly application is convenient for many patients. V-Tar is available only with a physician's prescription. What is skin grafting? In an autologous (use of a person’s own tissues) skin graft, the doctor removes skin from one area of a patient's body and attaches it to another area. This type of skin grafting is sometimes used for patients with small patches of vitiligo. The doctor removes sections of the normal, pigmented skin (donor sites) and places them on the depigmented areas (recipient sites). There are several possible complications of autologous skin grafting. Infections may occur at the donor or recipient sites. The recipient and donor sites may develop scarring or an uneven appearance, or may fail to repigment at all. Treatment with grafting takes time and is costly, but does work for some people. What is autologous melanocyte transplant? In this procedure, the doctor takes a sample of the patient's normally pigmented skin and places it in a laboratory dish containing a special cell culture solution to grow melanocytes. When the melanocytes in the culture solution have multiplied, the doctor transplants them to the patient's depigmented skin patches. A fairly new technology, this procedure is still in the experimental stages. What is Melagenina? Melagenina (now Melagenina Plus) was developed in Cuba about 20 years ago, using human placenta tissue. They may now use other animal placental tissues. The company in Cuba that markets it claims high success rates, but these cannot be substantiated, and many people have claimed no results at all. The product instructions indicate that application of the cream should be several times a day, followed by 15 minutes of natural sunlight. In 1998, Melagenina Plus was announced, which unlike the previous treatment requires only once daily application and does not require exposure to the sun. The company claims that the calcium chloride contained in the product strengthens the skin?s pigmentation. The product is not available in the U.S. or Canada, and is not approved by the FDA for use on vitiligo. What is Novitil/Sinvitil/Dermabest? Novitil (the company is called Dermabest) is a natural topical product that some people use, which contains sources of vitamins, phytonutrients and antioxidants. Some people report that Sinvitil is helping them repigment but results are mixed. Sinvitil is a formulated gel that contains an extract of proteolipids (oils). It purports to help stimulate the pigmentation process. What is depigmentation? Depigmentation involves fading the rest of the skin on the body to match the already white areas. For people who have vitiligo on more than 50 percent of their body, depigmentation may be the best treatment option. Patients apply the drug monobenzylether of hydroquinone (monobenzone or Benoquin) twice a day to pigmented areas until they match the already depigmented areas. Patients must avoid direct skin-to-skin contact with other people for at least 2 hours after applying the drug. The major side effect of depigmentation therapy is inflammation (redness and swelling) of the skin. Patients may experience itching or dry skin. Depigmentation is generally permanent and cannot be reversed. In addition, a person who undergoes depigmentation will always be unusually sensitive to sunlight. How do I find a doctor that treats vitiligo? The best way to find a doctor who treats vitiligo, as with most professionals, is from a personal referral from a friend or family member or a respected family physician. Of course, that may be easier said that done, since you may not know anyone with vitiligo other than you. One option, is the doctor search we have created on VitiligoSupport.org, and which you can click on from the left menu bar. Of course, you may live somewhere where there are no vitiligo experts. Many of our members have found that Universities and Colleges (all over the world) which have dermatology departments, are often the best place to find doctors who can treat vitiligo. Don't be afraid to ask your doctor if his office uses specific therapies, such as Narrow Band UVB. Many of our members have found their dermatologists extremely willing to try different approaches, and excited to hear about new research. Are there parts of the body that are harder to treat than others? For some reason, certain parts of the body, including the hands, feet, and some areas where the hair has turned white, do seem to be harder to treat than other areas. However, many of today's brightest experts in the treatment of vitiligo, maintain that ANY vitiligo spot can be repigmented, and even hair repigmented, with enough work and dedication. Can tanning beds (solariums) be used in place of PUVA or Narrow Band UVB? Many experts suggest that tanning beds (also known as tanning booths and solariums) not be used in place of PUVA lamps or Narrow Band UVB lamps or even natural sunlight. The problem with tanning beds is that the lamps in these devices usually emit a much stronger, broader spectrum of UV rays, and may not be as safe or effective for people treating vitiligo, and may result in severe burning or other side effects. You should consult your dermatologist before attempting any type of light or UV therapy. Can the genitals be treated? Obviously a sensitive subject, but one many people with vitiligo have questions about. The reality is, a substantial number of people with vitiligo (estimated at 25 to 40 percent) do experience at least some (if not extensive) vitiligo on their genitals. For many people, this can have an effect on their own esteem, and in their social and sexual lives. The genitalia can be treated and are in many cases responsive to treatment. Traditional therapies, such as steroid creams, and PUVA, have been used to treat the genitals, both male and female. Limited use of steroid creams has also shown results. Topical psoralen has also been used. Some doctors prescribe limited use of UV light, others have used excimer laser, pigment transplantation, and immunomodulators such as Protopic. Is it safe to use all treatments on the face and around the eyes? As with all ointments and creams, you want to discuss this with your doctor. The greatest risk to the eyes from vitiligo treatment is UV exposure. Prior to any treatment with UV light, it is wise to have a full Ophthalmic exam. Of course, many people keep their eyes covered with goggles while getting UV therapy. Many dermatologists will allow you to remove the goggles and keep your eyes gently shut for some period of time during each treatment. You should discuss this with your dermatologist prior to any treatment. Once a spot repigments, is it permanent? Will I have to treat my vitiligo forever? Right now, the products available for treating vitiligo, seem to be addressing the symptom of vitiligo (the spots), and not the underlying cause, which we still don't completely understand. Once a spot has been repigmented, some people report that the new pigment lasts a long time, and many do not report any relapse of that spot. Some patients feel that if you can get a spot to "close," meaning, to be repigmented completely to the naked eye, that it will have a better chance of staying repigmented. Still, a significant number of people report that after repigmenting, and then stopping treatment, that over time, from a few months to a decade or longer, the areas start to lose pigment again. The underlying cause of vitiligo is still not well understood. But whatever the cause, treating the spots is treating a symptom. Therefore, watching for new areas of vitiligo is important, so that you can begin treatment as soon as possible. Many dermatologists recommend various forms of maintenance of new pigment. Maintenance could include occasional light therapy treatments, or other options. This is also something important to consider. As research advances, we may one day soon be able to treat the CAUSE of our vitiligo, rather than just the symptoms. Why bother treating at all if permanence of repigmentation is not guaranteed? This is a common thought for those with vitiligo. Why should we attempt to treat at all, and spend the money, if the permanence of our new pigment is not guaranteed? There are several reasons. First, for many people, simply making some attempt to repigment, in of itself, is a powerful emotional tool in dealing with their vitiligo. Second, it is clear that the larger an area of vitiligo, or the more extensive vitiligo is on a person, the harder it may be, and the longer it may take to repigment. Better treatments for vitiligo are almost sure to come eventually. There is more research and investigation about vitiligo taking place now that ever before in history. Clearly, if within the next three, five or even ten years, something revolutionary is developed in the field of vitiligo, the more pigment a person has at that point, the better. What if my health insurance won't cover my vitiligo treatments? Many health insurance companies will initially reject treatments for vitiligo, or will approve only some, because they claim the condition is only cosmetic. Of course we know that's not true. The key with insurance companies, is to be persistent until you achieve success. Until health insurance companies universally begin accepting vitiligo as a legitimate medical condition that affects psychological and physical well-being, in addition to susceptibility to sunburn, this is how it must be done. The first step, is to have your dermatologist write a letter to the insurance company, explaining vitiligo, explaining the psycho-social effect, and the physical risks of vitiligo, such as serious sunburn. This is often sufficient, but it will be more convincing if you follow up with a letter of your own to the health insurance approval dept. Sometimes it will take more letters, phone calls, and supporting evidence, but if you are persistent, most insurance companies, even HMO's, will eventually give in, rather than have to receive any more letters and calls from you. 5. RESEARCH What research is being done on vitiligo? There is probably more research being conducted today in the area of vitiligo, than ever before. From the genetic basis of autoimmune disorders, to the structure of the skin, and understanding the immune system, studies are now being conducted which may yield more information about the nature and causes of vitiligo, and how to treat it more effectively. How can I help? Vitiligo Support International is a global community organization committed to supporting those affected by vitiligo, raising awareness, promoting research, and discussing effective treatments until a cure is found.. You can help support our efforts with a tax deductible contribution on our Contribution Page. Will they ever find a treatment or a cure that works well for everyone? Because people are different, and because there are thought to be many different causes of vitiligo, different treatments work better for different people. It is important to be willing to try new therapies if others are not working. Just because one treatment did not work for you, does not mean something else won't. As biotechnology improves, and as understanding of the human genome advances, and with ever more powerful computers to assist researchers, it seems almost certain that treatment therapies will continue to improve in convenience and effectiveness. 6. COSMETICS AND OTHER PRODUCTS Are there cosmetics available to cover vitiligo spots? Yes, there are many products out there to provide excellent camouflage of vitiligo spots. Some people prefer traditional waterproof makeup, designed to match every skin tone, and which can be applied to the spots only. Though they are waterproof, they are not always friction proof, and some men will not wear them. These types of covers are available in every skin tone, from very fair to dark black. Other people prefer stains (or sunless tanners as they are often called) which are both waterproof and friction proof and which last for several days. Sunless tanner products should be applied ONLY to the white areas, as they will darken all skin relatively. Thus applying them all over a body part, may result in the spots still being visible. There is some controversy about the safety of sunless tanners, in particular those that contain the chemical Dihydroxy Acetone (DHA) which blocks UV rays from reaching the skin, and which may not be healthy for the skin environment. Nevertheless, many people use sunless tanners (at least on occasion), and find them a source of great relief. Is it true that I can make my own safe skin-colored stain to cover the spots? Yes! Some members of Vitiligo Support have created their own safe homemade skin stain, made entirely out of rubbing alcohol (isopropyl) and ordinary Food Coloring. By mixing the ingredients together, a brownish color results, and the tone can easily be adjusted to match your skin. Is it safe for someone with vitiligo to use hair dyes or bleaches? Experts recommend that if you have vitiligo, you should avoid hair colorings and bleaches. Chemicals in these products called Phenols may cause the onset or further spreading of vitiligo. Temporary hair colourings however, such as henna, which do not contain phenols or phenol derivatives, are generally accepted as safe. When in doubt, you should consult with your physician. Should I use sunscreen? It is always a good idea for people with vitiligo to use sunscreen, whenever they will be spending more than a few minutes in the sun. Besides the need to protect the skin from severe sunburn, sunscreen will keep non-vitiligo affected areas from tanning, thus helping you to avoid the contrast that results between tanned areas, and vitiligo spots. However, there are an increasing number of medical doctors who believe that SOME sun exposure, usually 5 to 15 minutes of sun exposure a few times a week, may be useful in healing vitiligo. If you are interested in this addition to your treatment, you should consult with your dermatologist to see if it is right for you. What about sun-protective clothing? Sun protective clothing can be a good addition or alternative to using sunscreens. Since sun protective clothing is an easy way to protect your skin from the sun without using chemicals such as those found in sunscreens, it is becoming more popular. This clothing is rated by a UPF (ultraviolet protection factor) rather than a SPF (sun protection factor), as it protects from both UVA and UVB rays. A garment with a UPF of 50 would block 98% of all UVA and UVB rays. Sun protective clothing can be found for men, women, and children, along with hats and sun protective swimwear. 7. EMOTIONAL, SOCIAL AND RELATIONSHIP ISSUES How do I deal with the emotional issues of vitiligo? The change in appearance caused by vitiligo can affect a person's emotional and psychological well-being and may create difficulty in professional and social situations. People with vitiligo can experience emotional stress, particularly if vitiligo develops on visible areas of the body, such as the face, hands, arms, feet, or on the genitals. Adolescents, who are often particularly concerned about their appearance, can be devastated by widespread vitiligo. Some people who have vitiligo feel embarrassed, ashamed, depressed, or worried about how others will react. Several strategies can help a person cope with vitiligo. First, it is important to find a doctor who is knowledgeable about vitiligo and takes the disorder seriously. The doctor should also be a good listener and be able to provide emotional support. Patients need to let their doctor know if they are feeling depressed because doctors and other mental health professionals can help people deal with depression. Patients should also learn as much as possible about the disorder and treatment choices so that they can participate in making important decisions about medical care. Talking with other people who have vitiligo can help a person cope. VitiligoSupport.org provides message boards and chat rooms for this very purpose, and most members here have found them an invaluable source of support. Physicians, family and friends are another important source of support. As discussed above, many people with vitiligo have found that cosmetics that cover the white patches improve their appearance and help them feel better about themselves. A person may need to experiment with several brands of concealing cosmetics before finding the product that works best. Finally, counseling with a licensed therapist can help you examine your fears, improve your self esteem, and find ways to deal with the emotional and social issues that everyone with vitiligo faces. This type of counseling is covered by many health insurance plans. People stare at my spots. I am embarrassed by my vitiligo. Is there anything I can do? First, understand that to most people, vitiligo is unusual, and perhaps a bit unsettling. Do not be afraid to tell people what it is, especially children. Kids are pretty smart these days, and everyone can understand if you explain that vitiligo is a condition in which the immune system sees the pigment cells as foreign bodies, and attacks them (our best explanation). Explain that it does not hurt, and that it is a genetic condition, and is not contagious. Finally, try to maintain a normal lifestyle. If you enjoy hiking or sports, or swimming, then you should continue to engage in these activities (remembering sunscreen where appropriate). Don't avoid social situations and parties - these are good for your psychological well-being. In the old days, many people thought vitiligo was the result of burns or chemical spills. But people are becoming more aware about vitiligo, and it seems that almost everyone knows someone with the condition. How do I explain vitiligo to people? Should I even bother? We suggest that you be honest and open, and explain to people that vitiligo is a genetic condition, in which the body's immune system sees pigment cells as foreign bodies, and attacks them. Explain that it is a rather common condition, that it does not hurt or itch, and that it is not contagious. Finally, explain to them that treatment technology for the condition is improving, and that genetic advances may one day solve the condition. No matter who they are, everyone can identify with genetic ailments, such as cancer, leukemia, multiple sclerosis, Parkinson’s, and other conditions. When they realize that this is a condition just like every other miserable condition humans inherit, they are less likely to be afraid of it. I have a child with vitiligo. What should I do? Children usually cope best with vitiligo when their parent(s) is/are prepared to talk about the condition as openly and truthfully as possible. To pretend you haven't noticed something so obvious may make it difficult for your child to talk to you about it. Because this is often so difficult for parents to cope with, especially as relates to other children, it is important to talk with teachers, and counselors, and to be conscious if your child is being teased or bullied. Support your child, and encourage them to get involve with activities and hobbies. Teach them that it is OK to be different, and that it doesn't make them any less important. A wonderful book for children to read, is Lori Mitchell's Different Just Like Me which teaches children that there are many different people in the world, and that they really are very much alike, despite their obvious differences. I am afraid I might lose my job because of my vitiligo. What should I do? Under various laws, most Americans (and people in many other countries) are protected from discrimination in their work or from being fired based on medical conditions or illness. If you feel that you have been discriminated against because of your vitiligo, then you should consult an attorney specializing in labor and employment law. I'm afraid my spouse or significant other won't be attracted to me because of my vitiligo. What should I do? Relationship issues are without question one of the most important social problems that come up with vitiligo. People with vitiligo are frequently concerned that they will no longer be attractive to their significant others, partners or spouses. What we find to be the case most often, is that the partners of people with vitiligo are often times not terribly concerned about the vitiligo, and often say that it does not bother them. More often, we find that any relationship problems that arise are often created by the vitiligo-affected partner. So learn to communicate with your partner or spouse, express your concerns and fears, and LISTEN. Another possibility is to make yourself attractive in other ways. Pay attention to your hair, work out, have your teeth fixed. Skin does not always have to be the focal point. Counseling with a licensed therapist concerning your relationship issues (either alone or with your partner or spouse) can also be invaluable here. I feel self-conscious and uncomfortable at places like the beach or swimming pools. What can I do? Don't avoid the beach or swimming pools just because of your vitiligo. Do not allow vitiligo to interfere with the joy of living. From a physical aspect, it may make sense to go swimming and to the beach in the later afternoons, when the sun is not as strong. If it makes you feel better, wear stain or waterproof makeup cover. And if people ask about the vitiligo, you should explain it to them just as indicated above. How do I find a good counselor or psychotherapist to help me with the emotional issues? Physicians and friends and family are all good sources for referral to a therapist. As with all professionals, personal referrals are often the most valuable. Second to that, you should try to find a therapist who has experience in counseling people with medical conditions or conditions which affect their appearance. These types of therapists may be able to explore with you ways to deal with vitiligo, both inwardly and socially, and can work with you to maintain your self-esteem and pride.