Skin Lupus - Photosensitivity
Happy Holidays everyone.
I'm Delia, 33 and just diagnosed with skin lupus after experiencing hair loss. As you can see, I'm fairly new to the disease and have done some research online and realized that my hairloss is nothing compared to some of the symptoms of those with systematic lupus. Bless your hearts, I wish I could hug you all!
During my last visit to my Dermatologist, he suggested I might be photosensitive to the lighting (fluorescent) in my office where I spend at least 9 hrs a day. He feels my hair loss and mild rash is due to the photosensitivity.
I'd love to hear from anyone with skin lupus and how you've dealt with photosensitivity in hopes I can learn from your experiences. Thank you!
Hello, Delia, and welcome. You mentioned that you had been diagnosed with "skin" lupus - did your doctor mention a specific form of cutaneous (skin) lupus? Because, confusing as it is, there are actually different types of cutaneous lupus - and the type you have may affect how your hair grows back, whether you will have scarring lesions, and may even affect what medicines will be most helpful. So it will be important for you in your research and in managing the disease to know what type of cutaneous lupus you have. A good place to start with your research is the Lupus Foundation of America - www.lupus.org - they have several informative brochures you can print off your computer to keep.
Photosensitivity is a very common problem in people with cutaneous lupus and in systemic lupus too. Doctors are still trying to understand the exact mechanisms that cause photosensitivity. Managing photosensitivity can be an issue - you have to be religious about using sunscreen (the highest SPF you can find) and wearing a hat when you are outdoors. Ideally, you should apply sunscreen about 30 minutes before going out for best effect, then reapply it at least every two hours afterwards. Tightly-woven, loose fitting clothes with long sleeves are the most effective in blocking UV - thin t-shirts and other loose weaves may not offer much protection even with long sleeves. I found that out the hard way in Florida. People who are really sun-sensitive need to avoid being out in the sun during the hours when UV is most intense - about 10:00 a.m. to 2:00 p.m. in most climates. You can find cosmetics, lipsticks and even shampoo that have sunscreen built in.
If the lighting in your office is a problem, you may need to talk with your office manager about special shields for the lights in your office. You may also be sensitive to the light given off by photocopiers - so you shouldn't do any copying with the copier top up. There is special UV-blocking film available for windows, including car windows. Remember that some UV can penetrate even though glass, so if you are extremely photosensitive, you may need to be extra careful. A lot of medications and herbal products can make you even more photosensitive, so it's a good idea to check with your doctor or pharmacist before using anything new.
There is a lot of information out there - it can be overwhelming at first. So please feel free to post any questions or comments you have and someone will do their best to help.
I have had skin Lupus (Cutanious) for ten years. My adivse is to take this seriously! It can be just as serious as Systemic Lupus if you don't take good care of yourself. Wear sunscreen and cover up at all times! Floresent lights also affect me. I didn't take it seriously and ended up this year very sick and my Lupus turned into Systemic Lupus. I wish I had listened to what the doctors told me. No sun...no fatigue...and no stress.
Thank you ladies for your kind words of caution and advice.
I'll be visiting the Dermatologist again next week, for a follow-up to the hairloss which is so far the only symptom I have. I do see a slight bit of the butterfly rash, but barely noticeable that I think I might be seeing things.
Thankfully I avoid the sun like the plague, always have. But unfortunately, I work in an office environment with fluorescent lighting. I'm still working with the building management to get some sort of shields for the lights, but you're right, I need to take it a bit more seriously and insist they come up with something as they've been pretty unresponsive the last few weeks.
Once again...thank you.
I would suggest asking your doctor to write a letter documenting your photosensitivity to indoor lighting, and making several copies - one for the building management, one for your office manager, etc. Then get on the internet and research what's available in terms of UV fluorescent shields, print off the material amd give it to them with a copy of your doctor's letter. If you present them with the problem and the solution at the same time, it's a lot harder for them to put off doing something. And this type of request should always be documented in writing for legal purposes. Depending on how many employees are in your office, you may have legal rights under the Americans with Disabilities Act and corresponding state laws. So you need to put everything in writing and keep copies for your own protection.