SLE now think I've got Sceroderma - help my face is changing

I have SLE, which i have comr to terms with. But, About 8 months ago, I started noticing my fingers were swelling up like sausages. The skin felt so tight, it was hard to move my fingers. Then my face became very dry on the cheeks. I keep pursing my lips, clenching jaw. Then in January, I realised I could barely smile anymore. My cheeks and mouth area have like a strange mask feeling. To tight to move. In 2 months I've developed deep wrinkles across face. It's also gone a bit leathery. Inside my mouth there's little red dots, look like blood blisters. I've been getting chest pain & constipation too. I am waiting to see the rheumy on 15th March but know it's sceloderma. I am so worried about getting more deep wrinkles at 34 and not being able to smile. I put on 3 stone from steroids. Now my face is prematurely ageing and looking miserable. Fed up, anyone got these problems, any advice or suggestions about cream on face would be so appreciated. It doesn't matter what I put on my cheeks & mouth it's still tight. I've been using baby oil 7 -10 times a day, which gives such little relief.

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  • Wow sounds very uncomfortable try keeping your chin up plod on march seems ages off could you visit GP get earlier appointment ?? Awful I know but you have to hammer these guys for appointments I have been using double base gel cream and bio oil on the skin which has helped me and having Balnium oil baths it's no cure but helps to make it bit more bearable have had bad 12 months with SCLE whole body covered in it hope you get some improvement soon lets know how you go take care

  • I have had similar problems on my face & hands since December, it seem to be coming & going at the moment. Like you, I'm not looking forward to yet another auto-immune diagnosis to add to the list. But unfortunately that's the way it seems to go for us lupies. Try & think on the bright side, if you can get a diagnosis & start treatment early, it will keep the disease under control.

    If it is scleroderma, like lupus, it seems to go through flares & remissions. So I'm sure you will learn to recognize this & give your body the rest it needs when flares start to happen.

    How about contacting your GP, or rheumy nurse to try & get your appointment moved closer, or at least to get some advice & reassurance. Have you checked out the scleroderma site on health unlocked?

    Try not to worry, which I know is NOT easy! Keep in touch & let us know how you get on.

    Best wishes. X

  • Thanks so both much. I just feel a sense of despair. I know there is no point in keep looking in the mirror and at my hands, as the stress will not change it. Is there any medication you can take? We had 2 rheumy nurses at our hospital but both were made redundant in December. Thank you both for replying. I feel less lonely to know others out there understand what i am on about. Xx

  • oh huni, it sounds painful, and I have had very similR IN THE PAST. bABY OIL IS GOOD ALTHO TO MAKE THE SKIN MORE MOISTURized you have to put water on your face and leave your skin wet and then put the oil on

    i myself have found thru trial and error that nivea night cream works best for me. it goes on very greasy but it doest the job and quickly soaks in. failing that maybe coconut oil

    wishing you luck xxx

  • Had this cream long time ago can't remember where I got it from but I used on legs for very dry skin was brilliant. My hubby had sunburn and skin was peeling from shoulders I swear I put it on him and next day skin was perfect.it was natural olive cream by ziaja.I've tried googling it coming up as in america.but why not try just olive oil it's suppose to be great for very dry skin good luck x hope you feel better soon x

  • Hi, this is something I have suffered with for years. My doctor gives me aveeno cream. It is the best relief I have ever got. I was told by the dermatologist that because it is in association with the lupus, it will not be as devastating as it could be if it was the primary illness.

    I too hate it. It kind of adds insult to the already red and blotchy skin that covers my body. The worst bit is when you feel like the skin is going to rip from moving. I hope you get some relief from it all soon.

    Good luck.

  • Hi Fuzzrud, Living in a terrible sensitive body (inside and outside), I have learnt to never buy anything (includes food & drink!) without checking the list of ingredients, as if the product contains chemicals, e.g. mineral oil (a skin irritant bi-product from petroleum), it is likely to make matters worse. Ziaja seems a nice cream - never heard of it until today (thanks Letslaugh). I googled 'olive cream ziaja uk' and found several websites (see below). The websites only mention 2 'main' ingredients (no mineral oil - so good so far), so not sure what any 'minor' ingredients may be - will be listed on the packaging.

    I have tried umpteen products over the years. After learning about coconut oil, about a year ago, I found this to suit me the best. Coconut oil doesn't stain clothes or bedding. It is also less costly than anything else I have tried. Apart from 'clean' hair and body products, I also take various supplements to try and stay on an even keel - and it all adds up.

    I use coconut oil (Biona Organic) all over the body (also on my scalp for a few hours or over night before washing the hair). If you decide to try coconut oil, get the largest jar (food section ..not 'face care shelf'), as it is the same product to a much lower price. You can put the oil on as often as you like - it melts in your hand and the body loves to soak it up. :)

    Unless personal experience, people don't really understand how unpleasant dry skin can be. I hope you find something that works for you - good luck! xxx

    3 websites for Ziaja cream:

    naturalcosmetics4u.co.uk/en...

    ziaja.co.uk/offer/cosmetics...

    ziaja.co.uk/offer/cosmetics...

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