Skin pigmentation

[Amakura]

Hi everyone

Over the past couple of years or so, I've developed three different types of skin pigmentation:

1) hyperpigmentation - darker patches of skin located on my upper thighs

2) hypopigmentation - lighter patches of skin predominantly on my legs and trunk including back but makes an intermittent appearance on my face. Surprisingly not on my arms.

The only (blood) test I've had to date was earlier this month for vitiligo but haven't heard anything from the Rheumatologist. So, I'm assuming the radio silence is an indication that it's not that.

Sadly, my wonderful Dermatologist has departed the hospital including the NHS and is now only practising privately. However, her replacements including the Rheumatologist response have been that it's either a) common with lupus patients and b) it's a side effect of being on so many medications but could be due to being immunosuppressed. In a nutshell, they've said there is no treatment plan for this aka there is nothing they can do about it.

Considering saving my money and reaching out to my former Dermatologist as a private patient but wanted to post within this forum, first and foremost - as you may be able to offer some pearls of wisdom - based on your own experience - as to what to do etc.? Is this really part and parcel of lupus?

P.S I use factor 50 sun protector - not on prescription. During this year, in particular, I've been staying indoors and if I do have to go out, I cover my discoid lupus which is on my scalp. Can't find any sun protector for the scalp!

Take care

x

[Hamptons]

I have a circle under my chin and along my neck and several dark spots on my back and arms. My rheumatologist said that it was all part of the autoimmune general body not working as it’s meant to thing. Thankfully, mine is a light patch so it is not that noticeable.

[Amakura in reply to Hamptons]

Thank you so, so much for responding.

The response is similar to what was relayed to me but blanket statements always feel incomplete to me. Even if such a statement is relayed to a patient, what usually follows is some sort of detailed explanation that ends with a positive outcome.

Did you have it prior to being diagnosed? I didn't and that's why I don't understand when the hospital provided me with that general response.

x

[MrsMarigold in reply to Amakura]

Hello Amakura. I do not like blanket statements either. But in this case my own experience is lupus does various tricks to the skin. I have brown patches on upper back and some on my legs. My bottom lip has a wide roadway lol of white. Very clearly loss of much pigmentation so I’m rarely without lipstick. Which is fine because I love lipstick! My dermatologist has burnedOff some of the patches on sides of my face as they became crusty and unattractive. Left no scarring and they are thankfully gone. I hope this helps. Titters

[Amakura in reply to MrsMarigold]

Awww, it's awful isn't it and yes, I've also got hyperpigmentation on my lower lip. I'm not a bold lipstick colour wearer, so I use a darker lipgloss to blend it in. Probably look like a crazy woman but needs must!

I've just received a clinical letter from my locum dermatologist. As per usual, totally different to what is actually relayed to you in person. Now they're suggesting, they hyperpigmentation (lighter patches) is possibly a side effect of Hydroxychroloquine!

Although, I thought that the medication's side effect is darker patches. Who knows?

Glad your specialist assisted you and hope that one day, it completely clears up.

x

[DRunnerchick in reply to Amakura]

Hyperpigmentation would be darker spots (hyper=more as opposed to hypo which means less)

[Hamptons in reply to Amakura]

I certainly had the brown marks. I had not noticed the circle on my next until my rheumatologist pointed it out last year. I am not sure what else she could say. I researched and there are very few medications or things that will change it.

[Amakura in reply to Hamptons]

Funny enough, I did the same thing last night and there are a number of options but, and similar to yourself, my skin is overly sensitive. I'm going to do some further digging around and once, I've saved up enough for my private (favourite) Dermatologist, I will share the outcome here.

x

[MrsMarigold]

Hydroxy is known to also change hair color. My hair has been white and curly/wavy since my 30s. Hydroxy has added gold highlights to my hair. It’s not unattractive it’s just I would never have chosen it. Some people have noticed and commented. I just say oh well. Hair just does what it wants to do. 😂. 👩🏻‍🦳

[Amakura in reply to MrsMarigold]

Wow, that's interesting and I never knew that! It must look nice for people to comment. Hydroxy has a lot to answer for but at the same, the benefits are positive, I suppose.

[CatOf9Lives]

I've only recently been diagnosed with Lupus, but have had some darker skin patches for years and years. I'm not sure if they're the same as what you're describing. They are a bit darker than the rest of my skin, slightly mottled in appearance, and very slightly rough to the touch. They're not hugely noticeable unless you're looking closely... at least that's what I like to hope (!). Weirdly, I can largely remove them by exfoliating them if I scrub really, really (painfully) hard, so they must be surface level, but they do come back sooner or later in one place of my body or another. (Normal washing & showering does nothing to get rid of them though, so they're definitely not dirt, haha, much as I worry people might think so!!) I used to get them everywhere I sun-tanned on my arms and legs as my tan started fading. Since my diagnosis, I've been avoiding the sun. But I still have a few little dark patches around my collarbone, my lower inner thighs, and one lower inner arm. Weird! I think in my case they might be caused by extremely dry skin (which I have along with all the other sicca symptoms) plus dermatitis (which I also have). But that's just a guess - I really have no idea!

I do also get a few tiny pale patches, which are missing their pigmentation, elsewhere. Again, no idea what they are.

I read up on these causes of dark patches, while trying to figure out what they were. In the end, I decided none of them sounded quite like mine, but sharing the possibilities I came across, anyway, just in case any of them are helpful to you:

- Ichthyosis Vulgaris

- Lichen Simplex Chronicus

- Acanthosis Nigricans

[Amakura in reply to CatOf9Lives]

Ahhh you think just like myself! What you are describing is on my inner thighs - the dark patches and I also googled last night and came across Acanthosis Nigricans via dermnetnz (an excellent dermatology website) and thought it could very be that. Although, my hbA1c back in 2021 was within normal range. So, not insulin based. However, according to this website, it is part and parcel of having lupus and Sjogren's amongst other autoimmune conditions. So, possibly 'bingo'!

I haven't heard of Lichen Simplex Chronicus, just had a look on dermnetnz, it's definitely not that one but a very interesting read. According to the website, it itches terribly. As for the Ichthyosis Vulgaris, the light patches look similar and dry but it's not scaly (according to dermnetnz it is scaley). Although, I do get this overwhelming itch but it doesn't occur too often.

After perusing dermnetnz, you soon come to realise that skin is so complex but it's the first organ to show signs of anything going on internally. Fascinating.

By the way, the tiny white patches on darker skin, so I've been told, are due to sun exposure - apparently. It seems, from what you've described, that you have Linchen. Have a look at the Dermnetnz, which has photographs as well.

Nevertheless, I will put forward what you have kindly contributed to the Dermatologist and thank you so, so much. Very helpful indeed.

Hope you manage to pinpoint the cause of your skin manifestations.

xx

P.S by the way, I don't work for DermnetNZ, it's just that I was directed to the website via the dermatologists in 2007 due to a rare skin condition. So, sometimes I forget that it exists but last night, we were thankfully reunited lol

[CatOf9Lives in reply to Amakura]

That is very interesting that Acanthosis Nigricans can be caused by auto-immune conditions, not just insulin problems. I was getting a bit worried about it being a sign of pre-diabetes when I was reading about it and wondering if I had it (that familiar feeling to all auto-immune condition sufferers, "Oh no! Not ANOTHER problem!!" Haha.) But I've had my "dark marks"(!) since my teens, have always been quite underweight (terrible IBS ruins my appetite & digestion!), and don't like sweet food, so pre-diabetes didn't seem particularly likely as an answer. I think you're right about lichen, as I found a type on DermnetNZ which is in the kind of places I have dark patches and that says you can remove it temporarily by exfoliating, which matches my experience. Mystery probably solved! Thanks so much for the weblink and suggestion Hope you can get a solution too and your dermatologist is helpful when you see them xxx

[Pumpkin2009 in reply to CatOf9Lives]

First, I like your name. My granddaughter is 13 and has Acanthosis Nigricans on her neck. My dughter is thinking it is hormonal. The sad thing about it, at school, people have thought her neck is dirty which is upsetting to her. She was even sent to the school nurse who knew what it was. I wish my daughter would at least take her to be checked out for prediabetes as it is in the family and she is definitely a chocolateaholic.

Healing hugs.

[CatOf9Lives in reply to Pumpkin2009]

Aww your poor granddaughter! That must be really upsetting for her with some people at school thinking her neck is dirty and her being sent to the nurse about it It sounds like a doctor's appointment for her would be a good idea, hopefully for reassurance but if there is anything hormonal like PCOS to catch it early. I will likewise ask my doctor at some point about my dark skin patches, as you never know, it could be PCOS I suppose, although I think linchen might be more likely in my case. Just got to work through the list of 6 other health things I need to ask about/chase up first :/ haha. There always seems to be something wrong!

[Amakura in reply to CatOf9Lives]

No problem and I hope you find it useful

[Pumpkin2009]

Some years back, my past rheumatologist who was really good saw a weird patch on my face and insisted that before i left her office that day, i picked a dermatolgist and she made a referral at that moment suspecting cancer. I thought she was crazy at the time. Turns out, she was right. I had squamous cell and had it removed. Then I had a few other cases of it. Probably always best to get weird skin things checked out.I also have what I call blotchy skin of lighter and darker skin and way too visible veins. So hard to know what is what when lupus is involved for sure. Take care.

Healing hugs.

[Amakura in reply to Pumpkin2009]

Ahhh very interesting. I've got the vein issue alongside the lighter patches on one leg. The veins appeared first but it was investigated and they could not pinpoint why they occurred. I just try to ignore it now.

Gosh, you have a very good Rheumatologist and thank you for sharing your experience. I will get it checked out but via my previous Dermatologist instead. They will only listen to her.

Thank you and I hope all is well with you

xx

[Pumpkin2009 in reply to Amakura]

I did have a really good rheumatologist. Unfortunately, she became ill with sarcoidosis, another autoimmune disease and had to quit. The one I have now is not even a little close to her so far. I do miss her. She had a great sense of humor and knew more about lupus than most doctors I have met.

Healing hugs.

[Amakura in reply to Pumpkin2009]

When my dermatologist left, I actually burst into tears. Devastated. So, I totally understand how you felt back then and even now. Hopefully, the new Rheumatologist will eventually get to know YOU beyond the blood test results and clinical notes. So important but I'm sure it will happen. (This is what was relayed to me recently via someone who responded to one of my other posts and I'm looking forward to that day myself!)

xx