Dry flaking skin: Good morning fellow lupies. I... - LUPUS UK

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Dry flaking skin

Hollydebs profile image
29 Replies

Good morning fellow lupies.

I have Lupus with an overlap disease of Sjogren’s

Having major issues at mo with dry flaking skin on arms and legs. So much so it’s starting to make me self conscious. Dreading in case it goes to other parts of body.

Legs are now starting to be worse than arms. Wandered if due to the season I’m in some sort of flare as only escalated in

Last couple of months.

Saw Rheumy recently and showed him the issue but had a comment of that’s to do with Sjogren’s before he went onto something else. So totally unhelpful.

Do any of you get this dry skin problem?

Wandered what you find works. Should I use a scrub etc. To get rid of excess??

What cream do you find effective??

Any help you can provide would be gratefully Received.

Thank you for listening x

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Hollydebs
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29 Replies

The thing that I have found has helped my skin more than anything else is to give serious attention to my diet.

By avoiding processed foods and eating a good quantity of fresh fruit and veg I find it is easier for my skin to be well hydrated. Personally I find this helps me much more than trying to add creams and oils after the event.

It's also necessary to note that many caffeine containing drinks will dehydrate you as will alcohol. Some meds will actually have negative effects as well.

If it is difficult to eat lots of fruit and veg it may be that your digestive system needs some attention. If you are unable to absorb the good nutrients from your foods then there is usually some sort of digestive disturbance or a med that is blocking absorption.

SleepyWolf profile image
SleepyWolf

Hello, I use Eucerin lotion (contains urea) which is the only product I've found that really helps to control (but sadly not cure) my extremely dry skin. I spray baby oil on my wet skin straight after showering (with lukewarm water) and pat dry, then use the lotion. It's pretty much my whole body, with different areas becoming worse for a while then improving a bit (usually symmetrically, for some reason, e.g. both upper arms, both shins).

My dermatologist didn't feel it was likely to be related to my lupus, but gave me an explanation (which I instantly forgot) of the different ways in which the structure of the skin can basically be faulty. My dry skin is very long-standing, however, and I don't have a diagnosis of Sjogrens.

Avoid scrubs and harsh products; treat it gently!

Hollydebs profile image
Hollydebs in reply toSleepyWolf

Thank you. Appreciate the help and info

PMRpro profile image
PMRpro

Doublebase or Diprobase are excellent emollient products used for patients with severe eczema. You may manage to persuade a GP to prescribe them, if not they really aren't particularly expensive.

Don't use soap or anything that foams in the shower (strips all the natural oils out and dries the skin) and apply the Doublebase while your skin is still damp. There are cleansing products in the range I think.

Oshgosh profile image
Oshgosh in reply toPMRpro

Before I had my diagnosis of lupus Ihad increasingly dry skin on my lgs. The nurse practitioner prescribed me Avee cream.

I HVe found it useful and my skin is more comfortable. I use it twice daily

Hollydebs profile image
Hollydebs in reply toOshgosh

Thank you. Haven’t heard if this cream but will look it up.

Oshgosh profile image
Oshgosh in reply toOshgosh

Sorry, it’s AVEENO cream. It’s widely Ava in chemists in the UK. Hope it helps.

Georgiab123 profile image
Georgiab123 in reply toPMRpro

Yes I use Diprobase it’s excellent no smell so that’s a plus

in reply toPMRpro

Yes it is.

I too have lots of dry, flaky skin particularly on heels, scalp, arms and legs.

It’s part of the lupus/ Sjögren’s condition [lupus sufferers generally have skin cycles10 times faster than non-lupus people hence loads more dead skin is produced]. Usually all over body? Some skin flakes are too small to see but try this: gently scratch scalp/arms,heels etc over black paper and you should see the flakes of skin.

Nothing better than a long (at least 1/2 hour), hot deep bath soak 🛁 with Epsom salts infused with anti- inflammatory eucalyptus or lavender oil and naturally disinfectant. This softens all the dead skin and exfoliates eg by sloughing off/peeling off easily. Also deeply relaxing.

Follow this with a shower 🚿 standing up so that all the wet, dead skin is washed off under high pressure so that all the dead skin is completely washed off.

Use Dermol 500 an emollient plus antibacterial and soothing antiseptic soap substitute to soothe and moisturise. Dry body well and apply Dermatonics heel balm to heel and feet. This is highly moisturizing and urea based. For the rest of body use aloe Vera or tea tree oil based moisturizers or any of your choice that is non-allergenic!

Note that Dermol500 and Dermatonics are prescribable by GP🤔

Regards,

Alexa

PMRpro profile image
PMRpro in reply to

Unfortunately the bath bit isn't an option - I'd never get out again!!!! A long shower and loofah pad is doing the job though - don't have full-blown Sjogrens, just sicca syndrome and pretty mildly really.

NeuronerdDoaty profile image
NeuronerdDoaty

This was my first question on this site. A few days ago a new kind of burning rash started on my forearm. I can’t go to the doctor yet again but after the wonderful advise the first time I took an oatmeal bath for exfoliation and then mixed a sunscreen with Gold Bond diabetic formula and after two days I quit flaking. I do this 2-3 x a week. I use the sunscreen/gold bond daily. I have lupus/Sjögren as well.

Best of luck to you. (I kept all the answers I received in case this stops working. 😁)

Doaty

Lupiknits profile image
Lupiknits

I find Dipobase useful, or Aveeno. I’ve learned to be careful with the oily soap free skin washes in the shower though. Turns it into a skating rink.

Hollydebs profile image
Hollydebs

Thank you for all your help.

I’ve ordered some aveeno body wash to try as a few people rate this product. Mum gets doublebase on prescription luckily so can try to see if it works for me.

There’s so many creams lotions and potions out there it’s mind boggling.

I dread it going to my face or scalp but I’ve learnt with these diseases that they just do what they like.

CecilyParsley profile image
CecilyParsley

Hi, my arms and legs are so dry they flake. I use Diprobase twice a day. I now have it on my back. My hubby says I am like a seal when I get into bed but it is the only way I can get relief from it. I hope you find something that works for you. I tried so many different creams but Diprobase works the best for me. Good luck xx

Hollydebs profile image
Hollydebs

Thank you. Am hoping something works.

chrisj profile image
chrisj

I can recommend Diprobase Holly. You can buy it over the counter and it keeps extremely well.

I had a small snowstorm from dry skin on both legs just this week. Couldn't believe my eyes as, although I have sjogrens and lupus dryness being a major mouth problem, I've never had a much of a problem with such dry skin. Its usually lips, mouth and nose that are the worst. So seeing flaky dry skin that brushed off like snow had me staring in disbelief. I had a small tube of Diprobase, applied it and within 2 days the dryness seems to have cleared up. I've used it for my nose as well in the past, its good stuff. Hope that helps xxx

Hollydebs profile image
Hollydebs in reply tochrisj

Thank you. Is Diprobase non greasy??

chrisj profile image
chrisj

Depends how much you use and if you rub it in well as I did, its not bad at all. Just don't overdo it. Well worth the money.

My daughter used it for eczma on her daughter when she was little and when she saw me struggling with nose sores she told me to get some which I did. You could buy a small 50g tube just to try it. I've got the ointment but you can get cream which might be less greasy. Tesco have it for £4...good luck, let me know how you get on xx

classics profile image
classics

I use E45 and I think it helps. I use it night and morning. I've also got Sjogens.

Think scrub would be a bad idea.

Hope it helps.

Meg52 profile image
Meg52

I use Aveeno oil and moisturising cream, the oil has changed and is much thinner than it was previously and makes a mess of the shower, but Aveeno helps me.

Cas70 profile image
Cas70

Hi - had this for a couple of years. Now I gently exfoliate legs and arms then apply Nivea or Aveeno - are you using a heavy prescribed emollient? They made my skin worse ! I use Johnson’s new born soap on body and hair. Good luck

Hollydebs profile image
Hollydebs in reply toCas70

Thank you for that Cas70. Wandered if ok to exfoliate as gotta get rid of excess somehow.

Flaking skin only started couple months ago. Always had dry mouth eyes etc. Then out the blue noticed arms were flaking then few weeks later legs started. Now legs are worse than the arms. Rheumy not all that helpful. Also have dry hands and weird nails so Rheumy thinks psoriasis there and wants me to see dermatologist for opinion. Arms and legs he just said that’s to do with Sjogrens.

Want me to use steroid cream in hands but not keen on that.

He never mentioned what I can use for dry limbs which is why I reached out in here as there’s so many to navigate thru.

I’ve stated using Aveeno Dermexa cream and Aveeno Dermexa body wash. Early days. I’m also trying doublebase as my mum gets on prescription so can try it out etc.

Sigh 😳

Cas70 profile image
Cas70

I have Sjogrens and Lupus and there are so many things to cope with. Have you tried Xylimelts for dry mouth at night, pop one on your gum and it melts very slowly. I’d try the gentle exfoliation and then the Aveeno. Nivea is really good for me, any of their products. Avoid those emollients unless you shower it off , they stop the skin breathing, the Sjogren’s support group I run all agree and we use much lighter creams now. No Docs seem interested in our comfort , only WE know how we suffer.

Join a support group - it really helps, you feel much less lonely and unsupported! X

Hollydebs profile image
Hollydebs in reply toCas70

I’ve never heard of Xylimelts so will definitely look at those

Will have a look at Sjogrens re support group. You’ve been so helpful so thank you x

in reply toCas70

Hello,

I too have lots of dry, flaky skin particularly on heels, scalp, arms and legs. It’s part of the lupus/ Sjögren’s condition [lupus sufferers generally have skin cycles10 times faster than non-lupus people hence loads more dead skin is produced]. Usually all over body? Some skin flakes are too small to see but try this: gently scratch scalp/arms, heels etc over black paper and you should see the flakes of skin.

Nothing better than a long (at least 1/2 hour), hot deep bath soak 🛁 with Epsom salts and disinfectant. This softens all the dead skin and exfoliates eg by sloughing off/peeling off easily.

Follow this with a shower 🚿 standing up so that all the wet, dead skin is washed off under high pressure so that all the dead skin is completely washed off.

Use Dermol 500 an emollient plus antibacterial and soothing antiseptic soap substitute to soothe and moisturise. Dry body well and apply Dermatonics heel balm to heel and feet. This is highly moisturizing and urea based. For the rest of body use aloe Vera or tea tree oil based moisturizers or any of your choice that is non-allergenic!

Note that Dermol500 and Dermatonics are prescribable by GP🤔

Regards,

Alexa

Hello,

I too have lots of dry, flaky skin particularly on heels, scalp, arms and legs. It’s part of the lupus/ Sjögren’s condition [lupus sufferers generally have skin cycles10 times faster than non-lupus people hence loads more dead skin is produced]. Usually all over body? Some skin flakes are too small to see but try this: gently scratch scalp/arms,heels etc over black paper and you should see the flakes of skin.

Nothing better than a long (at least 1/2 hour), hot deep bath soak 🛁 with Epsom salts and disinfectant. This softens all the dead skin and exfoliates eg by sloughing off/peeling off easily.

Follow this with a shower 🚿 standing up so that all the wet, dead skin is washed off under high pressure so that all the dead skin is completely washed off.

Use Dermol 500 an emollient plus antibacterial and soothing antiseptic soap substitute to soothe and moisturise. Dry body well and apply Dermatonics heel balm to heel and feet. This is highly moisturizing and urea based. For the rest of body use aloe Vera or tea tree oil based moisturizers or any of your choice that is non-allergenic!

Note that Dermol500 and Dermatonics are prescribable by GP🤔

Regards,

Alexa

Hollydebs profile image
Hollydebs in reply to

Thank you Alexa

robsim profile image
robsim

I am suffering with this condition as well. Makes me feel very self conscious and nothing seem to work. I am always hiding my hands, legs and feet.

The things we have to put up with really takes it toll on our emotions.

Wish they could really come up with something to help people with Lupus fight the 101 conditions that impacts on our systems.

Hollydebs profile image
Hollydebs in reply torobsim

Totally agree Robsim.

Don’t think it’ll happen in my lifetime but one lives in hope.

A step in the right direction would be if my Rheumatologist and GP were more helpful sometimes and certainly more understanding rather than clinical & dismissive.

If they had to live with the many conditions & symptoms then I’d like to think they’d be more respectful of the illnesses and the toll that they can take on a daily basis.

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