it started on my face, my forehead to be exact, last August/September.....I had a huge area of pigment loss that turned seemingly white very quickly, although it seemed to "calm down" once I got bangs to cover my forehead and there was no sun exposure making any of the surrounding skin darker/tanner...
Fast forward to November/December of last year (2011), where the color and pigment around my eyes started to rapidly just go away....and it still away....there are bright "raccoon eyes" spots under both of my eyes and now that summer is here (even with good sunblock every single day and avoiding direct sun as much as possible) it is more noticable than ever...it has spread since to both cheekbones although one side (the left one) is much worse than the right....
I have seen a derm. several times for this issue, who blindly threw a script for Retin A my way, I was horrified when then original forehead spot became so blindingly white I just threw it away. In horror, no other way to put it. I was told "you have a very mottled complexion" at that time, it was sun damage, and it "may or may not repigment" over a series or months. Well it's been well over seven months since then and not only has it NOT repigmented, it seems to have gotten worse, but only on my face.
Since my bangs grew out long ago, the white spot on my forehead has come back, somewhat not as starkly as before, but it's THERE....not only that, my upper and lower eyelids have NO pigment left it seems, and it seems to be migrating down to my cheeks now....I look like a freak in the mornings, I really do and I am PALE naturally!!!
For a time, I went onto the Obagi skincare system/regiment, which did the opposite and lightened the darker areas for a better match....it looked okay better than okay actually for a while, but I am scared of long term affects of hydroquinone on the skin for any lenght of time...besides it's damn expensive and once you reach your desired results you have to keep using these products to "maintain" for life, from what I have heard. Also since it includes the Retin A each night, you need to be extra careful to avoid any sun at any cost. Impossible in everyday life, honestly,....
My question after ten years of background, lol, is how happy and successful have you been with the use of Protopic and specifically has anyone used it with success under the eyes/on the cheekbones? I have no health insurance currently have no viable way to get any (sadly I cannot afford the weekly premiums my employer would require me to pay), and I really want to order this from a Canadian pharmacy online since I would NOT need a script and at least try it. It's almost $200 per tube even this way but I am pretty desperate to improve this in any way at all that is feasible for me. Any thoughts and/or feedback would be so greatly appreciated!! I hate leaving my house these days for any reason, but especially am self conscious at work, as I work with the public and even with good makeup am very self consicous all the time and sick of this. Summer is here and as much as it used to be my favorite season, I HATE it now....:( I don't have to tell any of you I am sure how much it sucks to have it stand out all the MORE with sun exposure...the best sunscreens don't change that...only prevent burning I guess...
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I never had success with protopic its was a hard to deal thing, cause you might gain a little pigment then in other part of your body you are loosing some, Iam at the point that I don't care anymore about my vitiligo, Im going the other direction letting spread so I can be even again.
My 8 year old daughter has had vitiligo for a little over 2 years. Protopic works great on the face. It has completely repigmented more then one area on her face. We treat two times a day. Also use a good vitamin and eat as wholesomely as you can... real food, not processed. Her vitiligo is all over her body... and growing. The face is the only area we treat with protopic.
Good luck!\
You already know my story :) but Protopic worked wonders around my eyes. I can't use it on my chin because I will breakout like crazy. I've stopped using it though because I lost my insurance. :(
Amanda, so sorry to hear you lost your insurance. It's funny when I had it available to me, I never realized how important it really was (if that makes any sense) and never thought I would just have to be/live without it, but that is reality now, sooo....onward you know? I ws so happy to get a full time position in March, and thought "great I will have BENEFITS" now! Not the case...I could never afford these weekly premiums as I am making much less than I used to as it is and there is no room for another high expense whatsoever. Right now I am struggling to refuse the excess stress that comes with that as I know it makes this all worse and it's not worth it. It's really not. It just "is what it is" for right now (not forever) so I need to know and focus on that and am constantly making efforts to change this situation for the better. I also recently got about 12 inches or more of my hair cut off and have bangs again and the cut really puts focus on my eyes and not so much on the rest if that makes sense...so it has brought me some really needed confidence....which I have not felt in many many months...
thanks so much for your input and feedback it is really valued and I also wanted to mention you were one of the first members here to reach out to me and offer your support and experience, and I truly appreciate that too!!! :)
Here is a picture of the vitiligo on my cheeks
vitiligo on cheeks.jpg
hi im carmen from florida i have vitiligo for a lot of years and i know the feeling at one point i was cover my whole face and body went to the puva light and all was gone then it came back i purchase the puve light machine is working slowly but at least my face only have a few spots is bad because i am so depress as everytime i try to seek a day and they see my pic dont answer back isdepressing oh when people makes comments i ue protopic wich it helps a lot
you have a friend here in florida
Thank you Carmen, you have a friend here too, in NH!! :)
Thanks to all of you for your great feedback and things to consider trying. This has been devastating to say the least, I pray and hope constantly that i will wake up one morning and all will be normal again, but that doesn't seem likely to happen. At least not without me not giving up on trying different things.
I have heard so many of you say that some sun is needed for repigmenting, and then others say no sun. I avoid the sun as I believe for myself that is makes the normal pigment more tan and the whiter areas stand out much too much...
What is most frustrating to me is that I give up too easily if I don't see "instant" results from something, that is part of my "i want it now" personality. BUt it may not be the best way to think if I want or wish to see improvements. It's also very difficult financially as I have no health insurance, no derm appts. in my budget, no doctor and cannot get any help for anything medically prescribed. I have accepted this as fact although I am not happy about it, but plan to try to just do what I am doing. That is avoiding too much direct sun as much as possible, using spf50 sunblock each and every day and using my makeup to cover the worst of it. I do plan to restart the ginko biloba due to another discussion on here (I am lucky in that my vit does not seem to be spreading, it seems to have become "stable", I think I know now what that means). I was taking all sorts of vitamins back int eh winter but got disapplointed after only about a week or two and stopped taking them when I didn't see any improvements. I have tried to improve my diet by including more dark greens and veggies, fruits, and healthier options. I have cut down on salt intake majorly and try to eat balanced but healthy. I don't think that anything over the counter (including especially) self tanner helps me personally although it may work for others. Self tanner makes everything look much much worse and stand out MORE not less, I have learned that for myself by self experimenting a few times. So that is not an option for me at least. I have also tried different kinds, brands, etc. and they don't make a difference for me. I find that trying to avoid makeup or anything topical on days off does give my skin a "rest" and I also always always wash off my makeup before bed each night no matter how tired I am.
I am wondering however if by wearing sunglasses constantly, I am not giving the worst spots (cheekbones and near eyes) any chance to repigment either. I have to wonder if going out with sunblock but without these would possibly do anything for improvement. So frustrating not to have any doc to guide me but then they don't always guide the right way either from what I have read on here. Truth be told I am absolutely, positively terrified of the sun these days, have been for months. Have been much too afraid to try this although if I don't, how will I know?
I'm just like you Tina in that I want immediate results. I'm still waiting for my insurance to approve protopic and hopefully that will help. In the meantime, I'm taking lots of vitamins and eating healthy. I was trying to buy a UVB-NB lamp but just realized that I need a doctors prescription for them to send it to me since I live in the United States. The vitiligo that bothers me most is on my cheek bones too. Great to hear your story. I'm glad we have each other to communicate with as I feel like my doctor has no idea what she is dealing with in my vitiligo.
i been using protopic for about a year now it takes a very long time for you to see some results
Protopic in general is known to work well for vit on the face. I used it - twice a day - morning and night !!!!!! It helped with some of my vit on ears and lips. No luck near nostrills area. It will take 3 months or more - before you see it work. Good luck!
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