Vitiligo: Any fellow sufferers?

[Legacywr]

Just wondering if anybody has found an alternative treatment for vitiligo?

Basically, I've had little spots of it for as long as I can remember, but, 2 years ago, I had very aggressive chemo, and since, I have much more of it, my hands, feet, and the top and back of my head.

Luckily, I'm quite pale, so it only really shows when I have a tan.

Oddly, though, the parts of my hands not affected(?) by it... go browner than they used to??

[Jamessd]

I developed vitiligo on my face two years ago. No history of it previously, although I have suffered from Psoriasis from about the ago of 10.

Dermatologist prescribed Protopic. For the first 6 weeks or so there was no discernible effect, but then the pigment started to return in little pinpricks surrounding facial hairs. Those pinpricks of pigment grew and merged with one-another over the following months. After about 6 months I was completely clear.

Definitely worth investigating if you haven’t done so already.

[Legacywr]

Hey, thanks for the reply, I thought this subject would be very slow on here, or not get seen at all

No, I haven’t tried the GP yet, I assumed, wrongly, that conventional medicine fell flat on this disease?!

[Lozw86]

Interesting suggestion. I have had small patches on my hands for a few years but recently it has spread to a few patches on my face and other body parts. It’s starting to really bother me. I went to see my GP about it last week and am waiting for a referral to a dermatologist. I’ll ask about Protopic

I have read about mixed results using localised steroid creams and UVB exposure treatments

I have been taking Ginkgo supplements as I read this has helped with repigmentation in some studies but not in all patients

Reassuring to hear from others out there with the same condition

[bladerrw]

I started seriously losing pigment about 3 years ago (late 40s). I've now lost most pigment on my face, hands and neck and large patches on the rest of my body. Seems to concentrate on areas of previous trauma such as bike crash and rugby injuries.

In the summer it looks a bit of a mess. I don't fancy going on holiday anywhere sunny and get really fed up having to wear factor 50 and hats year round.

I had a few auto immune issues (arthritis, uveitis, allergic reactions) which the GP thought might be related.

I hadn't heard about Protopic but it looks like it needs to be used early in the attack.

[Digger]

Just noticed there is a programme on vitiligo later on bbc1 at 22:45.

[Legacywr]

Blimey, that's a coincidence!

[Lozw86]

Speaking to my doctors surgery again today they said I’m on a waiting list to see a dermatologist and they had no visibility of how long the wait may be so I’m making arrangements to see a consultant privately. I have found a couple of consultants who list vitiligo as one of their specialisms so I am feeling hopeful

[Legacywr]

I watched the program the other night, they mentioned that it was untreatable?

I do wonder when I see the dark skinned people with it, is there a possibility to get their skin tattooed with a suitable colour?

[Gooose]

I’ve got patches all over my body, and it’s spreadibg on my face now as well, I’m fair skinned so you can’t really tell, however I use a product called black beard for my stubble as I have patches of white stubble, lol, top stuff.

[lj04]

Legacywr said:

I watched the program the other night, they mentioned that it was untreatable?

I do wonder when I see the dark skinned people with it, is there a possibility to get their skin tattooed with a suitable colour?

My Indian wife has it. Mostly small patches on her face and fingers. She hates the amount of camouflage makeup she has to use.

[Legacywr]

lj04 said:

My Indian wife has it. Mostly small patches on her face and fingers. She hates the amount of camouflage makeup she has to use.

You may be the ideal people to ask about the following alternative treatment, Ayurveda, which I believe is based on traditional Indian medicine?

There is also this supposed treatment?

https://treatpsoriasistl01uvblamps.co.uk/?gclid=EA...

[dingg]

My wife has it , fortunately its not too obvious and mostly on parts which are usually covered , she no longer looks forward to swimming though due to it , doesn't bother me as I see it as a uniqueness

[TheTrash]

Mrs has it all over, she doesn't try to cover it up. I quite like it, if anyone else has a problem with it it's down to them,

[Z064life]

My older brother has this. Quite moderately. Doesn't really bother him.

We brought some tall UV light to help but not sure if it made any difference!

He just lives with it anyway.

[RenPug]

I'm another with it. Started about 5 years ago in a couple of places and has spread a lot since. Doesn't bother me too much apart from summer when I have to be careful it doesn't burn. In fact the worst part is when I have acquired new patches over the winter, i have 3 on one shin and a patch on each knee since last year. I only really know these are there the first time I go out in the sun and they burn.

I went to the doctor when it started and they were useless. Was advised it could be related to stress or diabetes or many other conditions and that unless I developed any other symptoms they wouldn't look any further in to it.

Will have to dig out iPlayer and see if I can find the previously mentioned program.

[spants]

Also have it - patches on my face which only really show when I go in the sun. I try to not do that without Lotion as I burn really quickly.

It stopped me from buying another convertible - otherwise it doesn't bother me,

[andym1603]

Another sufferer here with it affecting most of my body. Think I have had it since my mid-teens, now 55. Have learned to live with it and enjoy holidays in the sun when I can. Hurts like hell as the white patches burn very easily. Seen both my G.P and a dermatologist and both said it was untreatable. Some patches do seem to be "filling in" but not very quickly.

[Lozw86]

I have an appointment with a consultant dermatologist tomorrow so it’ll be interesting to see what is said. From the reading I have done there seems to be mixed opinions and experiences with the various treatment types. Recently there has been mention of use of Protopic for repigmentation with Vitiligo. Typically an Eczema treatment, some studies have shown positive results with vitiligo. Steroid creams seem a common treatment option, sometimes in conjunction with UV light treatment. I hope the dermatologist can at least help me set my expectations as to what I can and cannot hope for.

[Legacywr]

Good luck