What emollient creams help most (e.g. Cetraben etc) - LUPUS UK

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What emollient creams help most (e.g. Cetraben etc)

Barnclown profile image
14 Replies

Sjogrens sicca symptoms are even worse for me this winter than ever.

Am coping ok I guess, but my feet are especially needy....I do file off the dry hard skin every week which helps...and I slather on thick OTC shae butter moisturiser, but an older friend with rheumatoid arthritis has just told me that she is getting good results from the cetraben cream her gp prescribed recently. Am seeing my gp on Monday, and planning to ask about cetraben....but first am wondering: does anyone here have a prescription emollient cream that works really well for them? (Aqueous cream doesn't work for me...I react to something in it....and both a.c. and cetraben are paraffin based....so am thinking I may not tolerate cetraben)

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Barnclown profile image
Barnclown
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14 Replies
avionne profile image
avionne

Hi have u tried virgin coconut oil

Barnclown profile image
Barnclown in reply to avionne

great question: i will do so! have a jar of organic coconut oil on the kitchen shelf right now! have had this in the back of my mind as an alternative...brain fog! thanks vvvv much!

since posting my ? i've done a bit of research online & found that the National Eczema Society recommends aqeous cream is never used as a leave on emollient.... There is one ingredient in a.c. which is downright bad for susceptible skin types....here is the link:

eczema.org/aqeous

overnighthearingloss profile image
overnighthearingloss in reply to Barnclown

I have had terrible skin problems this winter and ongoing ulceration on several fingers.

I now cant use any chemical based anything on my hands. Rubber gloves for any kitchen sink task. Finger stalls almost a permanent attachment.

My gp said stay away from soaps as well and wash with moisturers.

I have been reading about vit c recently and there are suggestions that skin is very poor if you need extra vit c

So I am trialing extra vit c at the moment

Barnclown profile image
Barnclown in reply to overnighthearingloss

GRRRR: not nice! Your GP is on the ball, though: her recommendations match with those I've been given by drs over the years. And yes: high dose vit C & Vit D.

Is Raynauds involved in your finger ulcers?

Do you get chilblains too? I've found prescription Betnovate cream (topical steroid) v helpful stopping chilblains before they get as far as weeping - on both fingers & toes

overnighthearingloss profile image
overnighthearingloss in reply to Barnclown

I do suffer from raynauds, yes. Chilblains? I am not sure what they are exactly?

The added vit c maybe helping but this has been going on for months now so not expecting any overnight successes.

Barnclown profile image
Barnclown in reply to overnighthearingloss

Am no Dr, but have had to learn about various types of lesions because of my version of lupus & it's secondaries (raynauds etc)

Here is wiki on chilblains:

Chilblains (/ˈtʃɪlbleɪnz/; also known as pernio and perniosis)[1] is a medical condition that occurs when a predisposed individual is exposed to cold and humidity, causing tissue damage. It is often confused with frostbite and trench foot. The cold exposure damages capillary beds in the skin, which in turn causes redness, itching, blisters, and inflammation.[2] Chilblains can be prevented by keeping the feet and hands warm in cold weather. Chilblains can be idiopathic, but may also be a manifestation of a serious medical condition that needs to be investigated. A history of chilblains is suggestive of a connective tissue disease (such as lupus). Chilblains in infants, together with severe neurologic disease and unexplained fevers, can be seen in Aicardi–Goutières syndrome, a rare inherited condition.

Not sure what country you're in...Most UK drs are familiar with chilblains or should be. Pulp lesions also affect the fingers, toes etc of some lupus patients...I've even had them on the fleshy bits of my nostrils & ears

Wishing you all the best

Wendy39 profile image
Wendy39

Hello. I have Cetraben from my GP but have wondered if it works or in facts makes me more itchy! My skin is dry and itchy all the time. I made my leg bleed on Friday night by itching. I know I shouldn't but sometimes the urge is overwhelming. I am verging more towards Holland and Barrett Virgin coconut oil products. I never get on with aqueous cream. Also, have 2 different strength steroid creams but am wary of how much these should be used. Good luck Barn Clown, I hope you find something that works and provides relief very soon. Wendy

Barnclown profile image
Barnclown in reply to Wendy39

VVVV helpful Wendy: many thanks....am just going in to see my gp now...

Wendy39 profile image
Wendy39

Please let me know how you get on.

Barnclown profile image
Barnclown in reply to Wendy39

So, my GP didn't hesitate to give me cetraben. Our dispensary has to get it in. I hope to collect it later this week. My plan is to do a trial of coconut oil in some form and then do a trial of cetraben. I think I know what you mean: am also cautious about how much I use prescription topical steroids....but, gosh when I really need topical steroids I REALLY benefit from them (eg betnovate for stopping chilblains or vascular rashes). Please let me know how you get on too

Wendy39 profile image
Wendy39

Thanks for that. My legs get very itchy - more so than my other skin problems. But I have varicose veins and have always had eczema. My consultant also mentioned slight vasculitis at my last appointment after her examining me and me telling her that I had noticed my ankles were dramatically smaller since being on hydroxy (sanders I hadn't worn for 12 months with ankle strap - I did the strap 4 holes tighter). so I am wondering if the itching is related to my veins and whether steroids cream is appropriate - need to see my GP too. Best wishes.

Barnclown profile image
Barnclown in reply to Wendy39

Your attitude is similar to mine: I try to be open minded about the cause & diagnosis of this stuff.

I've never been told I have dermatitis....and my various rashes clearly are due to a variety of causes (some are vascular, some are reactive (due to warmth, to plant toxins, to insect toxins or whatever)) but I do have lichen Planus which really really needs both daily bathing with prescription emulsiderm in the water + prescrip dermovate ointment applied several times a week (I react badly to dermovate cream). I cannot recommend emulsiderm enough! Good luck figuring this out, and take care

molly19 profile image
molly19

I always get E45 and sometimes betnovate cream. My feet are a nightmare with corns 5 on each foot same points get them removed every 6 weeks. My skin so thin. I had a bad sore on earlobe they thought it was gangrene, very painful they removed part of my earlobe. My fingers and toes go black. Very sore when they warm up.

Barnclown profile image
Barnclown in reply to molly19

Am Vvv much feeling for you Molly....I know the turning black thing: scary at first, but you sort of get used to it....and it's to be respected: every month I see the same podiatrist to get a feet service & check up...I feel much more safe having an expert who knows my feet really well so can spot problems early when minimising them can hopefully be rather more straightforward. Corns are a dreadful eternal blight...but to my amazement, my chronic corns develop much more slowly now that I've been doing 1 year + of daily tendon tightening rehab physio, stretching the tendons that were contorting my forefeet & toes (due to the inflammatory action of my decades of infant onset lupus going without systemic treatment)....take care

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