Wow! There are more people like me out there!

I was diagnosed with Discoid Lupus about 6 months ago, although I now realise I have had it for about 20 years! I have suffered with sun sensitivty ever since I was pregnant with my first child. Over the years I have learnt to stay out of the sun whenever possible. Three years ago we had a series of stressful events and 6 months after that my hair began to fall out and scaring appeared on my face. I had already been diagnosed with an underactive thyroid and so put the fatigue down to that condition although I could not understand why the tablets didnt make much difference. Eventually after much denial about my hair I went to the doctor who told me it was probably psoriasis, after various creams and potions didnt work on my face or head, he refered my to dermatology. Within 10 mins of my appoinment I had a diagnosis, I went straight down for a biopsy and blood tests, which confirmed it. Today after skimming over the surface of it for a while I thought I would look into it further and found all sorts of information and groups including this one. I am on Hydroxychloriquine and have a scalp lotion, but the problem is I have a smallholding and so avoiding the sun completely is not easy! So I decided to look for UV protective clothing, but I dont want swimming or surfing gear, just ordinary clothing, mostly to cover my lower arms which have been badly affected by this recent run of sunshine. I look forward to reading everyones blogs etc and am relived to find other people like me, I always feel people think I am a bit mad saying I cant sit out in the sun, I cant even walk around in the sun and I always feel very tired if I do.

8 Replies

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  • Hi dawnepearse

    Sounds like your having right old time of it I have sle and i don't have any skin problems but i was told to cover up in the sun, i manage to find a web site that sold floppy hats that had uv protection its called wallaroo hat company hope this helps, hang on in there and take care, and your not mad.

    Bettie

  • Hi dawnepearse,

    Welcome to the site, I hope that you find it useful. If you're looking for more information and advice for light sensitivity and haven't seen the eclipse site yet then I'd recommend you give it a look over. Here's the link for you, eclipse.lupusuk.org.uk/

  • Thank you for the info guys, I am begining to understand a lot more about what is wrong with me now.

  • I echo Paul's reference to the eclipse range... I hope you find what you need to continue doing what you enjoy plus protecting yourself from the sun. All the best

  • Hello everyone,

    I also have a Discoid Lupus for 2 years, I`m 22 now. I`m intresting what kind of medications do you use in UK for lupus. I only use protopis moisture and when my hair really was falling off, corticosteroid Volon. And with the recommendation of mine immunologist I`m taking beta glucan pills which is immune modulator..I?m not from UK, I`m from Croatia , so i really want to now is there any difference in a treatment.In Croatia we don`t have this kind off sites or communities.

    Is anyone of you have experience with some natural supplement, oil of black cumin, way of eating. I heard that omega 3 fatty acids are really good for lupus..

    Don`t get me in the wrong way, but it`s really great?feeling to that you`re not alone at this.

  • Hi Kovrcava

    At the moment I am using dermovate scalp application, its definately halted the hair loss and made my scalp better, but I think i need to try to find something to encourage hair regrowth if possible. After a short course of steriods in the begining, I use a protopic ointment for my face and any areas that break out. I am also on Hydroxchloroquine, which a lot of sufferers seem to use. At the moment I am just trying to get to grips with what makes it worse, when it calms down in the Winter I will try to research natural supplements a bit more,

  • Also my dermatologist gave me dermovate to use on litlle area that is affected but I`m scared to use it because all the side effect of corticostereoid and that place disappeared now, thank God:) When I have contact dermatitis my dermatologist didn`t warn me about it, he only said that I should use it when I have the symptoms and I have it almost all the time so I use it for 4 years, so my skin become thiner and my menstrual cycle was disturbed. Protopic on the area that was last discovered on time work great and hair grew their, only it`s grey and need to take a time to get a colour.

  • I have developed photosensitivity from a psych drug- i had it real bad about 7 years ago withdrawing from another one but i can't remember who did my car windows back then. This time round i am getting a lot of pigmentation on my face only.

    I went to Guys hospital years ago and they confirmed my photosensitivity. I also have facial pain from these drugs as well.

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