Vitiligo experiences anyone?

In My Humble Opinion
1

A few months ago I was driving and happened to notice that the backs of my hands looked weird. Within a few days, I had loss of pigment over the backs of both hands. My MD sent me to a dermatologist, who diagnosed vitiligo. Since then I have been on tacrolimus ointment (Protopic) which my dermatologist says sometimes helps.

Anyone have any experience with vitiligo? My dermatologist was pretty pessimistic, and the tacrolimus is costing me $100 a week, which my insurance does not cover since it is merely cosmetic.

2

I don’t have vitiligo myself, but my BIL does.

He is a caucasian guy who is nearly albino anyway so the vitiligo is hard to spot. All his hair is white including his eyelashes, and his eyes are extremely pale. Since his coloration is so unusual AND he’s covered with tatoos AND he’s been my BIL for so many years, I can’t say I’ve really noticed his skin lately except to say he’s kinda fun to look at! Plus, he’s a real nice guy.

Anyway, I guess nothing I have to say is helpful to you.

3

My experiences are vicarious. My husband has lived with this disorder most of his life. His case is extreme though, in which he has lost almost all pigment in his skin. The hair on his head and chin are grey prematurely, but the rest of him is fine. It has not affected his life too much, only that he has to be extra careful in the sun.

To the best of my understanding, treatment options are few and with limited efficacy. Progression of the disease and response to treatment seem to vary wildly. I know there are support groups available. You can check out the following organizations for more information on the latest research and resources.

http://www.nvfi.org/
http://www.avrf.org/

Best of luck.

4

Thanks guys. It is kind of a bummer to have a problem for which support groups exist! :wink:

5

I developed Vitiligo because of an undiagnosed Thyroid condition. Most of my spots are in between my legs, which I can keep covered or the spots aren’t as noticeable against my milky white legs.

My problem is the back of my right hand (my hands are darker than my legs because they see more sun). I have a spot about the size of a half-dollar piece. In addition to being right handed, I am a Guidance counselor and Cashier. I get the “what happened to your hand?” question a lot. I usually tell them it’s vitiligo (“you know, what Michael Jackson has”) and the issue is dropped.

My question is this: Can I have a tattoo put on the back of my hand (just one color filling in the spot) to make it “blend” a little better? Has anyone thought of this?

6

Vitiligo is also treated with PUVA, or ultraviolet light treatments. Like a tanning bed, in a derm office. The treatments are usually covered by insurance, even for cosmetic things like Vitiligo, but you’ll still have to pay your copay for an office visit, and the treatments are usually twice a week. You start at a low dose/short time, and work your way up. Once you hit your maximum exposure time without burning, you stay there.

To be honest, I haven’t noticed much more than a slight improvement in our patients, but some of them do have it in areas that aren’t I don’t see. I have, however, had most of their doctors say that they are having an excellent response. We have one patient that has it on the backs of his hands, and he applys Oxsoralen ointment, which enhances the PUVA light. He’s very fair and intolerable to the light, so he comes in, sits with the ointment on for 20 minutes, and then has a seven-second treatment. He must notice enough of a difference to keep coming in for them.

We do use Protopic and Elidel in a small number of the vitiligo patients but it doesn’t seem to be very effective. Also, since the black box recently came out declaring a small increase in skin cancers and lymphomas in patients that use these medications (in reality a very small percentage), the doctors I work for don’t prescribe it as much as they used to. I guess they figure why take the risk when the benefits are often negligible.

7

Me too. And I am sick of the Michael Jackson references. The last time someone (inappropriately, IMO) asked what happened to my hands, I got a sad/melancholy look on my face and stared off into the distance. I then said, “Guess you missed the news stories a while back. Three kids home alone. I was walking by and ran into the burning building. I got them all out, but only the one survived”. Then I turned away and wiped the tear.

This may be how ULs start. He remembered the story, and was impressed to be talking with me.

I know there are topically applied makeups designed specifically for vitiligo. I saw them touted on a vitiligo site, along with before/after pics that were impressive. Tattooing ( I have many) would be difficult to get the color “just right” I would think.

I spend a good bit of time in the sun. Is natural sunlight effective at all?

8

Now, is it true that Jackson has vitiligo? Since he’s somewhat, well, eccentric, I’m not certain that this is a story I believe.

My thoughts to you that have to deal with it.

9

I have vitiligo.

It sucks.

Ok-I have NEVER, through 2 different insurance plans, had one that covers UVA treatment for vitiligo. It is considered cosmetic. Keep in mind that while you are barraging the white splotches with UV rays, the melanin in the other areas is also being darkened. My dermatologist did not reccomend UV treatment based on this, and the fact that overall effect is minimal, in return for cost, time and appearance. I do know that there are no derms in my area that provide such service. I would need to travel downtown, several times a week (I think, it’s been a long time since I discussed this option with my doc) for marginal improvement.
YMMV.

I have never heard of Protopic used for vitiligo. That seems like alot of money for little benefit, but it may help you.

I got vitiligo after the birth of my first child, shortly after I was diagnosed with hypothyroid. It has spread slowly over the last 15 years, but I still have more “tanned” skin than white. It is all over my hands, elbows, knees, feet and my entire neck. I like turtlenecks.

I use self tanners to help disguise it-cheap, easily applied and it does help.

I am very fair anyway, and in winter it is hard to tell that I have it. It is now starting on my face-yippee.

I loathe having Whacko Jacko as a poster child. I would rather people thought I had some rare contagious whatever.
This is a hard disease to have. OK-it’s not terminal cancer, but the negative effects on body image and self esteem are considerable and long ranging. If I could change one thing about myself, it would be this. People are rude and insensitive, for the most part. I have been told–“I won’t shake hands you-that’s impetigo!” :rolleyes: I have had other docs (my GYNE) tell me that it is NOT vitiligo and that I should use X creme–stick with your body system, doc! :rolleyes: and similiar stories.

I recommend sun screen (SPF 30, reapply) and self tanners and a thick hide.

I wish I could be more positive about it, but I have found those three work the best for me. Someday I hope to get a sense of humor about it, but so far–not so much, eh?

Good luck! Dunno about the tattoo thing, but think about if it spreads–you’ll ahve a bulls eye on the back of your hand.

10

oops-forgot my favorite “story” about having vitiligo.

Was told by my dermatologist(upon diagnosis) that “You’re lucky you’re not African American–it shows up on them much worse. You’re so fair, it doesn’t really matter.”

Yep. Thanks for that.

(sorry, didn’t mean for this to turn into self therapy session…)

11

Thanks for the idea. I’ll give it a try.

13

reported for Zombie Spam.

15

Reported.

16

I’ve had vitiligo for a couple of decades now. Back of hands/fingers and inside of wrists. It’s only obvious during the summer when I’m out in the sun and tanning (I ride a motorcycle). I’m not particularly concerned with my appearance so I haven’t looked into any treatments. If anyone asks, I avoid the whole MJ conversation or having to explain vitiligo by blaming it on being splashed by acid many years ago.

Not necessarily helpful for you I know, but it’s not usually a serious condition other than a warning to check for thyroid problems.

17

Is Vitiligo a disease? Other than needing sunscreen what are other adverse affects of it?

18

Vitiligo is believed to be some sort of auto-immune disorder, probably a combinations of genetics and environment that triggers the disorder. The pigment cells in the skin are destroyed. A lot of the treatments seem focused on either suppressing the immune system (to avoid further destruction) or encouraging whatever pigment cells remain to work harder (to improve color) but since the destroyed cells aren’t coming back the results tend to be less than perfect.

The main adverse effects, as noted, are social and body image. A lot of cultures view skin diseases very negatively, leading to sufferers being treated much like lepers. Even if a person isn’t subjected to that level of discrimination it still looks odd and is visibly not normal. However, it also carries an increased risk of skin cancer in the affected areas as those areas lack the pigment that protects against sun damage.

Thus, as we hear from sufferers in this thread, the more practical things to do are use high SPF sunscreen and/or cover-up make-up. Detroit-area newscaster Lee Thomas uses make up while on the job because, as he has stated, he does not want his skin condition to be distracting to viewers but outside of work usually leaves it off. I did talk to a tattoo artist once who mentioned being asked to match skin tones for both scars and skin conditions like vitiligo but he mentioned there were problems in that it can be quite difficult to match skin tones, tanning or lack of sun exposure can change the color of the skin around that patch, still leaving a discolored area, and vitiligo can spread over time, leaving a colored patch surrounded by a non-colored patch then more color. In extreme cases the non-affected skin might be bleached so the discoloration stands out less, but that can be controversial and, again, leads to a slightly increased risk of skin cancer since the permanently bleached skin is left vulnerable to sun damage.

It won’t kill you and it’s not painful, but the social aspects can make a sufferer very uncomfortable.