Skin: I used to have lovely, smooth, white skin... - LUPUS UK

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Purpletop profile image
21 Replies

I used to have lovely, smooth, white skin. Since being diagnosed with SLE and taking medication, the quality of my skin has changed dramatically: I have small red bumps on my legs, broken capillaries on my legs, visible veins all over the place, the inside of my arms has a slight mottled appearance, though not full livedo reticularis. Now my face has broken capillaries here and there and has a rosy cheek appearance, whilst there is purple at the inner corner of my eyes.

My rheumatologist said it is normal for lupus and there is no point using any creams or medication for it. Whilst I get that, I wonder if I can do something to prevent it becoming worse.

Have you had similar experience and if so, what did you do about it?

21 Replies
Chapter profile image
Chapter

Yes, all of that sounds like my body. In the last two years my legs look like old lady legs (well, I will be 59 on Tuesday, but really?), Two years ago I was feeling pretty good about my skin, this can't be just natural aging. After 5 months of bad rash on face and neck, it felt like I would never be the same. Nice new skin (with no scaring) was the one plus after rash was controlled. I do notice the veins and purple eyes more but my cheeks are clear. I use lots of a very mild moisturizer but that doesn't help the veins. I have not mentioned these things to doctor, just want to make sure we keep disease under control.

Purpletop profile image
Purpletop in reply to Chapter

I'm spending a fortune on expensive moisturisers and redness preventers, I'm terrified of face rash, this disease is awful!

Tigerlily4 profile image
Tigerlily4

Me too Purple. I especially loathe the broken veins on my face which I was told by a Dermatologist were caused by the fairly large doses of steroids I've been taking. This year I intend having them removed by cosmetic laser therapy. I've tried Intense Pulsed Light Therapy in the past (hurts like hell!) to absolutely no avail. Will let you know how the lasering goes. Fingers crossed! x

Purpletop profile image
Purpletop in reply to Tigerlily4

I read about IPL use for this but it depends on the wavelength used, apparently, so you need to go to a reputable place rather than the usual beautician who decided to do IPL. I filed that information in my head, it is good to know. Also good to know that it hurts, how come?! Before diagnosis I had IPL on my arms and I didn't feel a thing, I asked that the intensity is kept to comfortable levels. It took longer, so more expensive, true.

I believe it with the steroids because I just had to take a short course of 15mg from zero and after 1 day of it I noticed the broken capillaries. We can't win with this disease.

Good luck with the IPL and let me know if successful pls!

Purpletop profile image
Purpletop in reply to Purpletop

Sorry, I meant good luck with the laser!

Sher78 profile image
Sher78

u been looking at my body? ;0)

Luckily I have reached the stage where I do not give a chuff about what people think of my 'Corned Beef' arms & legs.

I used 2 b terrible when I was younger as it would b absolutely scorching but because the veins on my legs were so bad, I'd b on the beach with jeans & a bikini top lol!).

I have quite a lot of spider veins on my face but unless some1 is pretty close up I don't think they're that noticeable (or maybe I've just got used 2 having them so I don't notice them anymore).

Never bothered with laser therapy etc as NHS won't fund & I certainly can't afford it. Doc's were going 2 inject the veins in my legs 2 shrink them but in all honesty, I think my poor body's been through enough crap so far so I think I'd like 2 leave it alone 4 a bit now ;0)

Purpletop profile image
Purpletop in reply to Sher78

I'm still at the stage of worrying about each symptom as they come. Your pic with your son shows an unblemished skin, tell me the secret, come on.

Sher78 profile image
Sher78

It's taken me almost 19 years 2 get 2 this stage. I just try & look after it as much as possible. I'm pretty lucky that I rarely rash any where other than my hands & wrists & sometimes my lower legs, but I always tend 2 wear jeans anyway. With me it's veins & corned beef lol! I just make sure I always dry my skin properly, moisturise head 2 toe after baths/showers with Doublebase & never use soap on my face. I always try & avoid using the central heating & wrap up if I'm cold instead & never use. I exfoliate 3 times a week 2 get my circulation going & make sure the bath/shower isn't too hot. Never use soap or anything on my face, just water or witch hazel. I also have quite a few freckles which distracts ;0)

Purpletop profile image
Purpletop in reply to Sher78

That's really useful, Sher, thank you, I will have to be more careful from now on, I know.

rockchic profile image
rockchic

hi, purpletop, intense pulse light worked very well for me , it took most of my red veins away although it was very very painful! but i think worth it , my skin is so much clearer now and its given me more confidence , i aslso dont have as many skin flares caused by the lupus as i used to, but like everything in life what suits 1 person might not suit another lots of love rockchic x

Purpletop profile image
Purpletop in reply to rockchic

At least there is some remedy I can look forward to, thank you for sharing. Did you have it done at some specialised clinic or regular beautician?

rockchic profile image
rockchic in reply to Purpletop

i went to a beautician, but she had special training at a ipl clinic in london , she said too many beauty clinics are buying ipl machines but not having the training and it can be dangerous in the wrong hands it can cause severe burning and can leave scars if not done buy a trained therapist, so when you have it done check qualifications , good luck !

Purpletop profile image
Purpletop in reply to rockchic

Yes, I will do, definitely, thank you for the tip!

chaimee profile image
chaimee

I have to say, my skin, since I have been on hydroxy has improved greatly, I used to try anything going, so may be your meds need changing.just a thought.

Purpletop profile image
Purpletop in reply to chaimee

I've been on hydroxy for the past 4 months but it doesn't seem to make much difference. Who knows, maybe without it my skin would be even worse.

chaimee profile image
chaimee

The medication takes a time to get into the system , , I hope you improve with time.

Purpletop profile image
Purpletop in reply to chaimee

Me too, it horrifies me each time I look at myself. Thank you.

I get that too, every time I meet someone new its "Why are you so veiny" its really upsetting. I'm porcelain under all the purple and blue and I wish I could be that colour again. REally good foundation usualy helps my face Xx

MrsMouseSJ profile image
MrsMouseSJ

Hi Purpletop. I came across your post when it popped up as a result of a Google search. So interesting to read it, and the replies you had. I have what I think may be similar red bumps on my arms - almost like a flat shiny mole, but deep red. They are now spreading to my chest and other areas. The rheumatologist just looks and says nothing. Which I presume means nothing to fret about. But vain being that I am, or perhaps just a normal middle-aged woman? - I do fret. Did you ever find anything that works on yours or more about what they are?

Good wishes :0

Purpletop profile image
Purpletop in reply to MrsMouseSJ

Mine turns out to be keratosis pilaris. Dermatologists consider this so benign they don't even bother worrying about it. The trick is to keep exfoliated and moisturised. I notice that when I'm in a flare my skin goes really dry and these bumps go worse. Once the flare eases, the bumps flatten.

Yours doesn't seem like mine. Have you looked at telangiectasia?

MrsMouseSJ profile image
MrsMouseSJ in reply to Purpletop

Thanks for replying, Purpletop. I'm glad that you now have a diagnosis.

I happened to mention my issue to a friend who was an anaesthetist. She asked to take a look and told me that they are most likely cherry angiomas. So there we are - several doctors have just shrugged but a former anaesthetist immediately gets it! Certainly the photos of these things online correspond to what I have. Plus the usual,entertaining and in some cases rather alarming alternative views on what to do about them populating the net!

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