Hi all, haven't been on here in a while but I thought I would as I feel I've hit a wall! I've been sent home from work today as I can't cope with that stress on top of this. My face, scalp and ears are swollen, scarred and extremely sore and to top it off I am both physically and emotionaly drained.
I've got DLE and currently on hydroxychloroquine, Ciclosporin and prednisolone but the lupus on my face, scalp etc keeps getting worse.
I've used steroid creams and shampoos and now it's really getting me down. Can anyone make any suggestions or help please?
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steffie_steph03
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I'm sorry to hear that you are having difficulty getting your symptoms under control and you're very low at the moment. How long have you been on the treatments that you mention? Besides from treatment, are you being careful to avoid potential triggers such as exposure to sunlight/UV light, trying to avoid stressful situations, eating a healthy balanced diet?
I have been on hydroxy for about 6 months. The ciclosporin for just a couple of weeks. The drs unsure if I'm reacting to it so has done some bloods which I should get results tomorrow. I've actually been on prednislone for about 10 years as I also have behcets which is a nightmare!
It's strange as my skin was better in Portugal than it is now but yes I do try to avoid sun etc just seems nothing works at the moment
I hope that your doctor is able to resolve your treatment issue for you and can offer some advice when you see them tomorrow. Let us know how you get on.
If I may just add, I know you have a couple of spots on your face, but you are still beautiful....you really are! You are not alone, and in a few days you will feel stronger and happier. Treat yourself to a "at home spa day" and make some healthy fruit and veg smoothies. Listen to soothing music, with a face mask. Paint your toes, put a treatment on your hair etc etc. I'm not a "girly girl" but this always help lift me up. Have an afternoon nap and read a nice book under a tree in the garden. You will get through this.
Hi and sorry you're having a bad time at the moment.I noticed you say you came home from work?Do you work near computers or screens or shop lighting?I only ask this as I break out terribly if near certain screens and lighting and it really sucks for a while. I now go round certain places "looking like a hoodlam" as my autistic son says due to hood ,shades and scarf swallowing my face.Must look funny but at least when away from the triggers I don't have the red sores on my scalp and face which are at times soul destroying.It took me a while to realise what was doing it but at least it's a little better .This may or may not be of help to you but I am thinking of you and sending good vibes to hope you get sdome relief soon.
Hi thanks for the message. Yes actually I do, I work in an office Infront of a computer all day. Do you think that could trigger it?
I've had these same marks for over a year now and if anything they are getting worse not better. I've decided to stay off work this week as I don't feel I can face it. Not really sure what I can do as I can't avoid my computer screen forever...
Hi and yes computer screens and office strip lighting can be a definite trigger! Look under Lupus and light sensitivity/photo sensitivity. Also have a look at " eclipse" associated with Lupus UK. I suggest there are screen filters and similar which may be of help in fact your employers may me able to access and provide one .also you could try wearing a hat to work if you have a word with them as they may think it is well worth trying these as if it helps which it may well do you get to work and they get you as a happier employee : )
I have to wear a hat just to go to hospital appointments as some of the corridor lighting maskes me rash up.So have a look at the above and give it a try.Hopefully it will help and you can be a happy bunny ,well a happier one anyway.
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