can anyone tell me about there experiance with facial discoid lupus?

[paula stevenson]

was just wondering if i could share my storyand see if anyone can shed a light on it, i have never heard of this condition until last year i had a burn like circle shape on my left cheek and a smaller one on my nose, i ignored them a while as i thought it was just a sun burn mark but after 6 wks it still hadn,t cleared so i seen my doctor and told him that i thought it may be a burn from the sun, over the wks he prescribed different types of burn creams and it didntwork, infact it seemed to be getting bigger, do he referred me to a dermy who looked at it and knew straight away that it was discoid lupus, 2 biopsies were taken and dis lup was confirmed,i got topical steroid creams and we was advised to wear sunscreen every day, so the weeks went by the inflammed areas cleared but left deep pore like scarring! not the end of the world i thought but quite unsightly to look at, i learned how to cover it with make up and it just looked like a blemish , the months went by until a few wks ago i was getting scald like sensations on my skin and the arfea round the discoid scar was getting redder and more inflammed so the dermy put me on planquil and here i am 5wks after starting planquil, with the whole of my left check,my ears, my nose, and left sideburn is just in a discoid inflammation, thats the only way i can describe it!!!, so now the derny has added a strong dose of steroids,, i dont startthem until tomorrow, but imliving in hope that this will help my discoid lupus settle down, i really cant bear the thought of more scarring. has anyone ever used the same treatment? has it worked for you?

[Sunshine]

I have read your story, sorry to hear what you have been going through. I do not have discoid lupus. I have systemic lupus. I have not gone through the rash thing. I was thinking maybe you can google search: discoid lupus than from that may do a search on the question that you may have. I hope that a shared a little light to your question.

[paula stevenson]

hi sunshine i have tried google they tell me nothing that helps, so i thought it may be better to hear experiances from people who have been through it, i am so new to this discoid lupus i have been put on a lottt!of medication, been advised to stay outa the sun, wear complete sunblock, hat sunglasses, and cover my entire body with loose clothing, i feel like im living a nightmare at the minute, i mean how can i stay away from the sun, i have a 6 yearold daughter and her father died when she was 6 months old, so im also a single parent, i can lock myself away but i cant lock my daughter away, thereis no one to take her to the park or beach ect. it is honestly a very hard time for me at the minute physically and emotionally, im finding it very hard to come to terms with, i just cant seem to accept it, i feel soguilty for my daughter sake im the only one she has, and now im being told that if i want my face to stop coming out in lesions i have to stop going out! its affecting me mentally because its on my face,

[Kiara]

Hi Paula! sorry you are going through such a hard thing! I dnt get the scaring rashes, but I do get the butterfly rash, which is always on my face. Right now I use PLAQUENIL, 300mg daily, PREDNISONE,30mg daily, NEXIUM,40MG DAILY (thats to protect my stomach from the meds), MTX 25mg once a wk, and many other meds, those are just a few. Plaquenil seems to work, not much in my case, but yeah it does work, takes a little time to kick in though; now prednisone thats like the worst drug ever, but in our case, steriods are one of the main drugs we mostly start on, and they do control inflamation rapidly! The worst side effects from both drugs you were prescribed are the ones PREDNISONE has, like the moon like shape, some people experience ACNE (yup I'm one of them)lol! I have a huge discussion evrytime I see my rheumy, I always want her to bring the dose down, hahah! its so funny! ok back to the theme! lol, give it some time, plaquenil takes about almost 2 months sometimes to start working! but be patient and you'll see; plus you jave us here, we understand you!! xoxoxo, ~~~ KIA~~~

[paula stevenson]

do you ever get sick of the different medication ?? sometimes i feel like i rattle when i walk lol. i take 400mg of planquil, 40mg ofprednisone, 40mg amitriptlyne (muscle relaxant) 75mg voltarol(another anti inflammatry), neurontin 1800mg these are for nerve ending pain that lupus are causing, although i hate it all i too get the butterfly rash, the worst of them all is the discoid lesions, its very hard to accept up until last year i had a normal face, if you could call itthat lol only joking, im literally afraid to even think about uv rays incase any more of my face starts melting!!!!!

[MRS.YANKSTER]

Hi Paula th i have discoid and systemic lupus mine also started on my face . I do not mean to scrare you but i will be honest when your DR. tells you to stay out of the sun it is important to try if Iam in the sun now for one hour i will be compleatly covered with sores the pedisone plaqunill and cream will help and do wear sunsreen (i got in the habit of putting it on under my makeup and chest and arms everyday) control it but you have to do your part. It is so difficult to make this change . I love to garden and be outside . the worst time to be out is from 10;00 to 4;00 . here is some more info Love and prayers to you and keep in touch
Mrs.yankster

Lupus, the Sun and UV Rays


Pain is triggered by many things when you have lupus. The main triggers are the weather .. and the sun. Photosensitivity is one of the most aggravating triggers of the disease. It doesn't take much exposure to ensure a reaction of pain.

Lupus patients are very sensitive to UV rays, especially those who suffer from Discoid Lupus. It is a known trigger for a flare! That is why it is so important to wear sunscreen when outside in the sun. But what most people don't realize is, they should be wearing UV protection inside stores as well.

UV rays from the sun can trigger reactions in the skin in the form of a rash, or purple spots under the skin called pupura, but will also cause muscle and joint pain.

People with Lupus must also be aware of "hidden" UV rays as in Fluorescent lighting. If you work in an area with fluorescent lighting, then you should be wearing a sun screen even while working inside the building.

Also .. for those of you who shop at Walmart or Kmart, most grocery stores .. or ANY store that uses the fluorescent light fixtures (long rectangle boxes with long tube-shaped light bulbs) .. please be aware that fluorescent lighting gives off UV rays unless the fixture is fitted with a special lens.

Most fluorescent lighting can be covered with a protective Plexiglas panel that allows light through but not the radiation that triggers the pain. There is a UV protective panel available for fluorescent lighting fixtures but because of cost, it is usually not installed in offices and stores.

A two hour shopping spree in Walmart is equivalent to a full hour in the sun. You don't get sunburned but you do get the full hour of UV rays. Enough to trigger a flare of itching, rashy skin, aching muscles, low grade fever, and/or extreme fatigue.

And you thought the shopping itself was making you ill .. guess again!! It is the lights in the store!

So go prepared .. wear your sunscreen .. use a hat or a scarf .. and even though you may be tired from all the walking, you wont begin a flare that will last for several days.

Computer screens also give off small amounts of UV radiation. Most people are not affected by it, but people with lupus or other photo sensitivities should take precautions. Especially if you are in front of the screen for long periods of time (more than an hour at a time, for days in a row).

The best thing you can purchase to help eliminate the problem is a monitor anti-glare screen that fits over the monitor itself. It knocks down the glare as well as blocks the UV rays. 3M company makes several different kinds.

Limiting yourself to short periods of time in the sun will help eliminate some of the pain, but wearing sunscreen is a must! Sunscreen should be at least 30 SPF, with 45 SPF being a better choice.

[paula stevenson]

thanks for sharing your story, it is very scary my face is just so awful, its also scarred quite bad where the large discoid lesion first appeared last year, its a nightmare, I WOULD LOVE to be able to enjoy the sun like i use to, it has been getting me done alot, its was quite a shock when i found out what it was and a bigger shock cause i,d never evenheard of this condition before, i still dont no of any one that i no who has it!!!, i would prefare to keep the pain and have my normal face. ne way again thanks v much for sharing a bitof your knowledge xx

[Debra Highberger]

I have both Lupus sle and Lupus discoid. I also have the marks on my face that you do. My entire chin is effected as well as both cheeks. But my nose is the worst. It is an awful situation. Trying to keep it "settled down" is a good term for it and that's the way you should look at it. I have long given in to the fact that it is here to stay. I am on all the meds you described as well as methotrexate which they are going to remove me from because of the sun sensitivity it has. I am EXTREMELY sun sensitive. I have been my whole life even before my diagnosis. Along with the topical steroids I apply sunscreen 2-3 times a day. It's tough to get off in the shower! To hide it I use Bear Minerals makeup. My dermy said that the black spots will never go away. Although I recently heard about lazor treatment that lessons them. I have an appointment in a few weeks I will let you know what she says. good luck. Debra