› Forums › General Melanoma Community › Vitiligo Advice
- This topic has 8 replies, 5 voices, and was last updated 4 years, 9 months ago by
MarkR.
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- July 21, 2019 at 4:58 pm
I’ve just got back from a weekend camping with a very red face.
I spent Saturday outside on a fairly cloudy day in England in the type of weather where I wouldn’t normally bother with suntan lotion. Part way through the day I felt my face was warm and my wife commented about it so suntan lotion applied by too late. The reason I mention this is having looked at my face the redness is only in certain places (forehead, nose and part of cheeks) and the rest of my face is the normal colour and appear patchy. When I mentioned this to my wife she said that she thought my skin had looked a bit patchy for a few months and thought I had previously applied suntan lotion poorly causing this patchiness!!! We were with some friends one of which gets sunburn if she looks at a candle for too long so the sunburn iI now have seems a bit unusual.I was wondering if this might be the start of Vitiligo and wondered how this started for other people?? As best i can tell this is only on my face – i have had a few grey eyebrow hairs recently but am going grey anyway so don’t know if that’s relevant or not
Thanks
Mark
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- July 21, 2019 at 5:45 pm
Mark, I’m getting vitiligo on my hands and back and slightly on my face. Also, my eyelashes and eyebrows have gone white. Lastly, a patch of hair on my head has gone white near the injection site. My oncologist warned me to take extra precautions because these places on the skin will burn easily due to less pigment. So, I think your observations and those of your wife are probably spot on. I’ve been wearing UV protective fingerless gloves and use sunscreen every day, even when sky is overcast (as it often is where I live in San Francisco). Cover up and be safe. -
- July 21, 2019 at 6:32 pm
Hi Mark, this is the exact way I first noticed my Vitiligo after starting Nivo back in Jan of 2014. We went on a family trip to Cuba and end of first day even after sun screen my hands were patchy red and burnt, some lesson we learn the hard way and in my case lesson always seem to come the hard way!!! There is a silver lining with this lesson and that is of all the negative side effects that us immunotherapy folks can get, Vitiligo seems to be correlated with positive responses for the most part. Best Wishes!!Ed -
- July 21, 2019 at 9:15 pm
Thanks both – comparing your experiences to mine it seems quite similar so will wait to see what my Onc says. In many ways I will be pleased if it is vitiligo given the encouraging connections. As I have thought about it this evening I have thought of a few other times when I have caught a bit of colour on my face in recent months when I really shouldn’t have so will be extra careful from now on-
- July 21, 2019 at 9:52 pm
Mark – my US dermatologist is pretty strict with me on sun lotion, even in winter. i dont follow his advice early mornings, but wear a hat and cover up instead. at lunchtime i definitely lotion up, with my hat too. In the UK the weather is easier and less sunny, but still i think the UV can be strong, so lotion and hat and covering up I believe are essential.
Still, I think the vitiligo is potentially great news, so that should cheer you up! (Unfortunately, i keep looking but dont seem to have it :-()
hope this will be a good sign
mark -
- July 22, 2019 at 6:32 pm
Thanks Mark – I’m generally pretty good with sun tan lotion but this was a day for fleeces and a coat (July in the Uk eh!!) so really didn’t think it would be an issue. Lesson learned now and will be a lot more vigilant. Am hopeful this is a sign of good things and hope it gets me through the til the next scan!
Hope things are still going well for you
Mark -
- July 22, 2019 at 11:44 pm
Ah yes, vitiligo. I had two treatments of Nivo left out of 24 and the vitiligo started to show. I’m sure it was there earlier but just coming out of Minnesota’s winter, I had not had much exposure to sun. All of a sudden blotcihes started to show on the back of my hand. I started to where a short sleeve shirt and blotches appeared on my arms as well. Most recently, I was outside and used sunscreen on my arms and hands. I was out in the sun for about two hours and my neck started to burn. Holy crap, my neck was completely red with a little brown below my collar line. vitiligo had turned my neck completely white and it proceeded to wipe out most of the color on the front of my neck. I also have a few spots on the side of my face. So yea, I learned the hard way – use sun screen liberally. I also have had a rash (lichen planus) which just loves the vitiligo skin. I used a cream to stop some of the itching but now if I scrape my arm, it peels the skin back(thin skin). My onco said the only way to stop the vitiligo was with an Immunosuppressant and said there is no way he was approving that. My dermatologist decided to recommend UVB light therapy for both the vitiligo and lichen planus. and my onco was ok with that. I’ve had two treatments and will check in with the dermatologist in 6 week (3/week).. It’s one heck of a time commitment and if it seems to be helping after the six week trial, people usually go for at least 6 months to 1 year. The vitiligo is a pain and it would not looks so bad if I just completely avoided the sun. I’m really hoping this treatment takes care of the lichen planus. I guess considering the alternative, it’s certainly manageable.Steve
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