Hi everyone,
So when I was diagnosed with vitiligo a few years ago I was heartbroken. All I wanted to do was find a way to restore my pigment so I went to see a private dermatologist.
He started me on protopic and narrowband UVB exposure. I bought a handheld UVB device and started to follow his prescribed course. It started out as three times a week for 90 seconds. You then increased it by a percentage each week (can't remember the exact figure but I think it was something like 15%).
I did get a little bit of repigment on a small patch on my forearm but it was super slow. I saw him once more and he gave me another version of protopic - it was something they had made in the surgery where the active ingredient was intensified.
It didn't really get any better but the amount of time I had to expose myself to UVB kept going up. It got to a point where it was taking up huge chunks of my evening and I started to burn myself occasionally which was horrible. It was also super expensive seeing the dermo regularly!!!
So I decided to give up. I felt the amount of time and effort I was putting into it was making me focus on my vitiligo too much and was unhealthy. I also felt I could cope with the amount of patches I had.
Recently my vitiligo has spread and I have been struggling to deal with it. I did a bit of research and was lucky enough to find this amazing site. I was probably a bit ignorant but I never gave much thought to how my diet or lifestyle could be influencing my vitiligo. I want to try to repigment again using a combo of UVB and a better diet/lifestyle but am worried it will start to consume me again.
So my question is, how do you all find the time for long bouts of UVB?
Sorry - I realise I've basically written my life story to ask a simple question!!!
Replies
About the time, the answer is here:
http://www.vitiligomap.com/manageUVB.html
http://www.vitiligomap.com/buildUVB.html
Hi Drew,
Welcome to Vitiligo Friends.
I am from Ottawa in Canada.
I don't write here very often...I mostly read...but your post caught my attention. I too was heartbroken when I found out that I have vitiligo. I had just gotten back from Mexico and spots on face appeared...almost like I had unevenly applied my sunscreen. I have other spots on my body too. And now the end of my fingers are depigmenting as well. It sucks.
I had success with protopic and elidel. My face had repigmented and I was soooo pleased. I have not yet used any form of phototherapy. I stopped using protopic which was a dumb thing to do. This year, the spots showed up again on my face and now with summer being here, you can really see them. So I have restarted applying protopic but results are very slow this time around (if any even).
I'm waiting for an appointment with my derm. When I sawfinally got to see him my face had repigmented and it was winter so no other spots were really visible (I'm very pale). I showed him a pic of what my face was like prior to using protopic. He was amazed by the results and said that if I had seen him like that he would have suggested phototherapy. So I'm pretty sure that phototherapy is the next thing I will try.
I do agree with you that fitting this into our busy life is not easy. Even just applying cream and ointment is not easy to incorporate in a routine. I often forget...or simply don't have time.
I wonder whether I will ever reach the point of focussing on acceptance rather then battling this full force.
That's a good question. If you decide to battle it full force, you will have to do much more than what you have done. Otherwise, the threat will be allways around.
More details at: www.vitiligomap.com and www.vitiligomap.com/protocol.html