Many of us have dle along with Lupus and Fibromyalgia. I react to the sun and uncovered fluorescent lights. I have learned to purchase uv clothing from Coolibar when they have sales and include hats. If you should leave your job; cobra your insurance. Many of us can't get medical insurance privately or life insurance because of the health problems). Did your doctor run ANA, Sed Rate, C-Reactive Protein?
Prior to beginning Plaquenil, you should see an optomtetrist for a Plaquenile Baseline; in fact your dermo should write a referral for it. Some insurance companies will cover it due to it being secondary to a medical condition. Plaquenil is the lowest and least damaging drug to begin with. Your eyes will need to be checked every 6 months by an optometrist to verify there is not any damage to the eyes. Most people who have eye damage have been on Plaquenil for 10+ years.
When I started having joint pain while on the Plaquenil, I began Kenalog (cortisone) shots every 3 months. The max is 4 shots per year; they break through the pain. It takes about 2 days and makes a huge difference in your life. Shots are not absorbed by your organs as is prednisone and are safer. My neighbor was on Prednisone for 15 years and her organs are now failing her. It's sad and breaks my heart.
I hope this info has helped you. If you have any other questions; don't hesitate to ask. Please keep us informed. Take care.