I've been taking Prednisone and Plaquenil since my DX this past January and have been feeling quite a bit better. I've taken precautions like having my car windows tinted, wearing a broad brim hat when outside, mostly staying inside during the day, wearing sunscreen everyday even inside, etc. My partner and I went away for the past few days - and I forgot to take my new sunhat - first mistake!! But I thought I would be okay wearing SPF50 sunscreen and only going out in late afternoon - second mistake! I was outside from about 3:45 to 4:45 p.m. and had to go in because my face was burning. Sure enough - the butterfly was back! I woke up with bloody discharge from my nose - a sign that the nose sores were back! I also had severe chest pain during the night which I suspect is costochondritis - inflammation in the chest caused by Lupus. Obviously, I became overly confident because I felt better and thought I had won a round or two in this battle. The lesson learned is that I won't underestimate the viciousness of Lupus again! From now on, I will take ALL precautions and take NO unnecessary chances!
My doctor would have me take an extra dose of prednisone for those days that I would be outside- helped quite a bit
Thanks! I’ll ask my doctor about that tomorrow. It’s so depressing to think I can never go out when the sun shines. You give me hope!
Lupus Warrior, I was diagnosed in Oct. I have taken the same precautions as you…hat, lotion and UPF clothing. Also have one of our cars in FL tinted dark and am getting another car up north, also tinted. So far, unless it’s just a fluke-but I doubt it, seems to be helping quite a bit. I never leave the house without my new regimen. One day, I mistakingly forgot to apply my lotion. After 1 set of tennis, when I realized, I was about to have a panic attack because I didn’t have my lotion on. Luckily I had it with me and applied it right away.
Thanks for a great post. I’ve always loved the beach, pool and sun. It pains me to have to be covered literally from head to toe in the summer months in fear of a flare. I continues to be a struggle, especially when my closest friends are beach goers and sun worshippers. I sometimes feel left out when everyone goes to the beach and I opt-out because I’m too upset and uncomfortable to be fully clothed in long sleeve shirts, pants, hats, etcetera. This summer will be another difficult period. However, I know that I must put my health first, no matter how inconvenient it may be. My friends are still my friends at the end of the day. It’s just that I sometimes feel they don’t truly understand how badly the sun affects me.
Am happy for you that was a TOTAL win for you!!!! The Battle with Lupus is hard and so much that you have to remember , and do's and don'ts , just be ware and careful we are sentsitive to everything .... Lesson well learned ... Beverly L.