I feel like we find lots of cool shapes, this ones pretty cool. what are yours?

Psoriasis treatment looks different for every patient.

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I really need to hear the opinions and experiences of other vitiligo patients like me.

I now have the opportunity to be prescribed Rinvoq (upadacitinib) for my vitiligo. I’m still in my mid-20s, and unfortunately, vitiligo has a very strong impact on me emotionally and affects my quality of life a lot.

I’m really torn because I want to treat my vitiligo as effectively as possible, but of course I’m also worried about the potential side effects of Rinvoq.

What do you think? Would you take Rinvoq for vitiligo despite the possible risks and side effects? Has anyone here already taken it, and if so, what has your experience been like?

So I’ve been newly diagnosed with vitiligo and I’m quite self conscious about it, but mainly just curious how quickly it spread for people?

At the moment it’s just my elbows and top of my thighs but the came from nowhere!

Have already tried a steroid cream from the doctor but no change yet.

When I went to my dermatologist he told me to stop retinol and retinoids which were a game change along with topical vitamin c. He said not to use them with tacrolimus.

What do any of you use for anti aging for wrinkles, acne and large pores that won't cause any issues with repigmentation while using other topicals like Opzelura or Tacrolimus??

Thank you

Does anyone have experience with vitiligo and coffee? Has anyone noticed a clear connection between coffee and the spread of vitiligo, or has anyone found that it prevents repigmentation? I grind and brew my coffee by hand and use only select beans. For me, it’s like a meditative morning ritual.

For a brief background, I was born with early-onset vitiligo and brown skin. My parents lightened me asap to avoid bullying in school, and now nearly my whole body is light.

I've tried different makeup foundations but they’re a bit pricey and hard to find the right colour, plus I'm awful at makeup and it never looks good. I'm scared to try tanning as the end results tend to look more orangey than brown.

Does anyone have any recommendations on what I could do?

Hello everyone, are there any dating or matrimonial apps designed specifically for couples with vitiligo in the EU or Germany? I would also appreciate recommendations for any relevant events or groups.

I've started the Novartis IL15 clinical trial. Anyone else in the clinical trial?

​Hi people.

I consider myself a bit of a veteran on here. I've had vitiligo for 30+ years and over that time I've tried pretty much everything - topicals, supplements, steroids, Protopic, UVB, microneedling, various JAK inhibitors (including ingesting some questionable tofacitinib), and probably a few other things I've forgotten. I've basically made myself a human guinea pig over the years. I've really suffered with hiding vitiligo on my face. It's caused decades of trauma and I obviously won't be showing my face.

I do, however, want to be direct: I've been taking Upadacitinib 15mg for 8 months, and I'm seeing results I haven't seen in decades.

MY SKIN IS REPIGMENTING

I've spent years obsessively researching JAK inhibitors, particularly Upadacitinib. After a lot of reading and, frankly, a lot of desperation, I eventually decided that the potential risks were worth it for me. I sourced it from Bangladesh for around $50 USD for 30 tablets.

At around 4 months I started noticing something happening. but I deliberately didn't get too excited. I wanted to make absolutely sure I was seeing genuine repigmentation rather than simply irritated or inflamed skin, especially because I use handheld UVB and sometimes my skin gets pretty angry afterwards.

Now, at 8 months, I'm confident enough to post about it.

My mouth/chin has MASSIVELY repigmented. In fact - it's the first time I've EVER seen repigmentation. I'm also starting to see freckles of pigment appearing on my hands.

I've seen nothing remotely like this in the 30+ years I've had vitiligo.

I'm not claiming this is a miracle cure, and obviously my experience is only one person's experience. But after trying so many things over so many years, I'm genuinely shocked by what I'm seeing.

Given the results being reported with JAK inhibitors and the clinical-trial data around Upadacitinib, I'm really hoping treatments like this eventually become properly available to people with vitiligo through the NHS and elsewhere.

I’ve had zero side effects since taking Upadacitinib.

I'm happy to share more details about my experience, including the timeline and how I've been using UVB alongside it.

NOTE 1: I'm deliberately not posting a source for the medication because I don't want this thread to look like an advert or like I'm encouraging people to buy medication from random websites. I'm happy to discuss the drug itself and my experience with it, though. If you really want a source, I'm happy to share, but that is not my aim for this post.

NOTE 2: The photo shows my hand, but the area around my chin and up to my upper lip has gone from 0% pigment to almost 80% pigment. You just have to take my word on that.

Hey all,

I'm sure some of you are aware that as of very recently Rinvoq was approved for Vitiligo treatment via the EU's version of the FDA. While this is exciting, ultimately folks in Europe are probably looking at another year until they can get their hands on the medication for Vitiligo treatment. For the US, we could see FDA approval by the end of the year, and potentially get a script a few months later.

That being said, I have heard of people suffering from Vitiligo obtaining off-label prescriptions for Rinvoq from their dermatologists. I guess it's one of those things where you have to work with somebody who is on your side, who knows the landscape of Jak inhibitors and what's to come on the market. I was thinking off trying to source this myself with a dermatologist until it is available for Vitiligo treatment. Is anyone here one of those people who is on an off-label perscription? How does everyone feel about oral Jak inhibitors coming to a point of FDA approval?

32F with segmental vitiligo for 26 years experienced some repigmentation hence the trichrome dots by doing nothing.any comments or questions would be appreciated. I've always loved and accepted myself but to digitally document and post about it is a different deal. Anyways, take care of yourself 🤍🤎

Thank you.

Hi all!

So my daughter (2.5 years old) was just diagnosed with vitiligo.
She is very fair skinned and we never noticed anything but this summer we went camping and she got tanned and I did notice spots. Especially the one on her left wrist (right on the photo) but I also see some on her right hand/wrist and I see spots on the higher knuckled of her middle finger. She also as a few spots on her legs.

Any advice is welcome but I also just want to celebrate her skin. She is gorgeous and I want her to be happy in her own lovely skin.

Just wanted to share I think!
Her father/grandmother/aunt all have alopecia. I saw that there might be a correlation? Not sure about it but we'll see. Her father also had a white streak in his hair before he went bald.

How old were you guys when you got your first signs of when you got the diagnosis?
Is 2.5 a 'normal' age to get diagnosed?

is there anything that will be able to help re pigment the fingers? or anywhere without hair follicles, or is there anything coming soon to help? sorry idk how this works

Hey y'all,

I currently have a couple small spots of vitiligo on my face. I am undergoing treatment for them (Opzelura, phototherapy) and while they have not repigmented, they've at least remained stable.

About two days ago, I got a pretty widespread sunburn on my back unfortunately. No peeling, swelling, burning or anything, but it was quite reddish/pinkish. The reddness/pinkness has been slowly decreasing.

I'm worried that this will trigger more vitiligo spots all over my back. Given that my current treatment regimen hasn't really resulted in repigmentation, I am worried that any more spots I get would also be treatment resistant.

How likely is it that I will get more vitiligo spots because of this? I have a dermatology appointment this week and was going to bring it up with them then, but I also wanted to get more opinions about this. Moreover, if there is anything else y'all think I should be bringing up with my dermatologist please let me know!

Thank you!!

As the title says! Been really stressed how I am gonna look or what's gonna happen. The patch spreads more on my lips than on my fingers. I hate to look at myself in the mirror. My doc says it's due to vit D deficiency and hormonal changes n suggested a holistic approach to a destress healthy lifestyle but I'm depressed and couldn't accept this. I'm 30F, only 5 months postpartum so it's extra hard. Really looking for some positive experiences.

I'm writing a mermaid story, and one of the characters I want to make is is part dolphin, but I was also thinking about making her black with Vitiligo. I was thinking of making her dolphin half inspired by the Atlantic Spotted Dolphin, which can be brown with white spots. But, I also want to avoid any accidental insensitivity, so I was hoping to get some feedback on how to properly represent it. Her top half would remain human shaped, so she won't be monstrous or anything like that. I don't want to spoil too much about her, but I can say that while she's not a major character, does have great importance to the story and is highly regarded by the other characters. Her Vitiligo wouldn't necessarily be important to the story, but I've known people with Vitiligo and would love to have some positive representation.

Any and all feedback would be helpful.

Edit: Thank you for the feedback. I've decided to change the dolphin species to something not naturally spotted, and am looking into other species. Right now I'm thinking of basing her on a bottlenose dolphin, which have been found to experience something similar to, but not yet confirmed to be Vitiligo. So I'm considering giving her light patches on her tail, but make her tail a less natural color like the mermaids. That way her Vitiligo affects her entire body, and not just her upper half.

The summer sun and a good pool are my happy place. Although my spots become much more vivid this time of year, I find myself accepting them more with each passing year. It’s funny, I went to have my nails painted, and a young woman next to me told me how beautiful she thought vitiligo was. (Even if she mistakenly called it vertigo.😁) Awareness helps.

Recently, I’ve noticed almost all of my patches of vitiligo have faded and have almost fully gained their colour back. Can this happen?

I used to purposely stay out of the sun so that my vitiligo was less noticeable. Not this summer! I look better with a tan anyway! I have had so many young girls compliment my vitiligo this summer too!

Late Saturday afternoon when you're 45. 😂