Anyone have any ideas about the state of my dreadful skin? Not diagnosed with Lupus but I do have Sjogrens syndrome, recently diagnosed but I reckon I have had it a long time ....
They look as though I work as a mechanic, I cannot even get them clean, and who else sands their knuckles? Anyone? lol
Does this look 'Lupusy'?
Ooh poor you that looks definitely odd - could it be a fungal skin infection perhaps? I have Sjögren’s and it causes many skin manifestations too. The dryness alone usually affects the skin badly too.
You don’t need a Lupus diagnosis to have weird and not so wonderful systemic symptoms either- Sjögren’s is a sister disease of Lupus and is always systemic to a greater or lesser extent. This is a lovely, welcoming community and you don’t need a Lupus diagnosis to be here 😊😎
Hi I have found my skin has become extremely dry over the past year and seem so sensitive to creams that I have used for years which I now can’t or even a lipstick if I use it I grtacold sireon my lips. I have ssogrens and lupus Addisons I think the the ssogrens is responsible for this issue I hope this helps regards sandra
Hello;
Yes I do, have extremely dry skin also. My dermatologist has told me to use 100% natural coconut oil. It helps tremendously. I am to get a shower (or bath), pat excess water off, applying coconut oil on my entire body from head to toe, do not get dressed for at least 20 minuets for the coconut oil to absorb into the skin. I’m will not tell you it will help you but, it has done wonders for me. Before using the coconut oil, should you choose to try it, you may want to check with your doctor.
I have SLE and skin issues.
Hopefully I have helped you some?
Wishing you a great day!
Thanks, I have some, and will try it! xx
I second the use of coconut oil.
Ha, ha, it sat on the surface for a while, eventually sank in but was unable to do anything in between, and made no difference!
Yes, I eat nut and seed butters to help with this.
Hi Lottagelady,
Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
Are you under the care of a dermatologist? If you are not, you may like to request a referral to a dermatologist via your doctor.
We published a booklet on lupus and the skin, you may find it helpful to read at lupusuk.org.uk/wp-content/u...
According to The Lupus Encyclopedia, "a common problem in people with Sjogrens Syndrome is dry skin". The Lupus Encyclopedia provides helpful tips and information on how to treat dry skin listed below:
•Take shorter baths and showers
•Do not use soap on most body surfaces, except underarms and private areas
•After bathing or showering, pat the skin dry; do not rub (rubbing removes moisturising oils)
•Avoid using fabric softeners. They irritate dry skin.
Please keep us updated, wishing you all the best.
Thank you, doing most of that already, but it doesn't seem to help! Not under dermatology, I think there is an issue with referrals there in my area at the moment but will push it!
Totally relate to this, and my palms are extremely dry too.
My new cream turned up today.
I’ve put it on my hands and arms.
I also taken a before picture of my recent skin biopsy mark.
Of course nothing works straight away
But my hands seem more moisturised without a greesy feel to them. Which is pretty soothing. Will keep you posted. I’ve alsi got the lip seal too. My lips are always dry and crusty 🙁x
Same, always got sore edges of my lips too - find Blistex Relief Cream the best thing ever for it though, hate those horrid greasy lip balms ... hope it all helps, keep us posted! x
Will deffo keep you updated. It’s really not a nice feeling to feel so dry.
There’s loads of erea creams on eBay that are affordable too
X
My GP is good enough to put them through for me and as I am exempt for 2 reasons, it does help! x
Has anyone actually commented on your dryness? Specialist etc? X
No, have shown Dr Price my SS specialist but she just said 'oh yes they are very dry' .... the odd thing about me is that although I have SS, I also have Hyperhidrosis! So sweat excessively, but generally only on my head and neck - think part of it nowadays is due to anxiety but sometimes I can be just sat down at home and it literally runs off me - the anxiety part is because I do look such a horrible MESS! My hair looks as though I have just had a shower and it makes my specs steam up so I can't see, awful 
So ... I take Pilocarpine to increase my saliva, and Probanthine when I need to go anywhere looking decent (not often lol) which sucks the bloody juice out of me! Then I am so dry my lips stick to my teeth so I can't talk properly and the heat in my head, you can see it trying to burst out of my face, and feel it if you just lay your hand just above my head without touching it - my hairdresser was amazed at how hot my head felt one day .... my carer washes my hair and to be honest within 1/2 a day it looks like she hasn't bothered as it just turns into a frizzy 'candyfloss' - ugh!
They have just called me in for an ESA Assessment too ffs - I have so much wrong with me, it's a ridiculous waste of money - yes I can reach up to my top pocket and walk up 2 steps but that does not indicate I am fit to work - I wish ... would far rather have my health and my pretty reasonably paid job which I loved than all the crap I have to endure ... I look like shit, I feel like shit, and half the time due to my colostomy I am covered in it too!!! Sorry having a good rant, lol xxxx
Rant away - SS is such a weird disease. I’ve had years of no sweating even with any exertion so I can easily overheat- but can wake up often with nighty drenched through from chest sweat. What’s this about?!
Pilocarpine often causes drenching sweats I believe? It’s great that you see Dr Price though - I’m in Scotland and my rheumatologist seems to know nothing much about my form of Sjögren’s apart from the obvious sicca.
How's the cream doing? Which part of Scotland are you from - I lived in Fife for a while when younger, loved it up there x
I’m in north Fife. Love it here too!
Cream? Do you mean the ugh chemo cream for actinic Cheilitis and squamous cell thing on lip? If so I’m enjoying a month off and then have to keep taking it until ulcerates then stop again for as long as it takes. It looks much the same as before to me and lips are pigment faded with same chapping - but I’ll not moan as it as it’s so much better then when on the ugh treatment!
One thing I’ve been very lucky with is that the skin clinic here (Dundee) is top notch. It took a few GP appointments to persuade one to refer me though!
Ahhh, got confused between yourself and Lisalou i think ?!
Have to say that sounds pretty foul .... poor you xx
Undiagnosed, But Certain I Have This
I’ve not long been diagnosed with skin lupus, but if there is any UV (even when it’s raining), I get a flare up. 
I am curious, how many of you have a diagnosis of SLE but have never had organ involvement? And how many of you have been diagnosed with .. 
Anyone have dry or swollen eyes and can check this photo please/ advise on drops? 
Not naming names but where do I go from here?
