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Is this a "normal" lupus sun rash? I was only diagnosed a few months ago & this is the first time I've had a reaction to the sun. I was only out side for 35 minutes and I was not in direct sunlight. In addition to this rash I had a horrible headache, nausea, and worse fatigue than usual.
usually mine is almost invisible. But when it does show up it looks just like that. It feels like you want to rip your skin off, and scratch underneath.
And I also have the exhaustion, headache, and nausea the next day.
Sarna lotion, i swear by it. It's the only thing that works, I spent hundreds on medications, creams, sprays, benadryl, and this stuff is amazing.
Rebecca
Thanks for the tip, Rebecca. Yes, it is very itchy & painful. I wasn't sure if it was from lupus because it's my first reaction to the sun. I was sick for 3 days! Nausea, headache, fatigue so bad I couldn't even get out of bed. It was horrible! And I wasn't even in direct sun. I guess I'll have to be a lot more careful.
If I go on a long car ride, even if it's not summer or sunny...I have to put sunscreen on my left arm because of the sun coming in the window. It sneaks up on you quick. I was outside talking to a neighbor unexpectedly last week for about 20 minutes and boom, i was itchy for three days. Sarna helps with the itch, I was even losing sleep because i kept waking up to scratch it...but if I go camping with the kids I need a good few days to recover no matter how much sunscreen I use - it gets in my scalp even....the fatigue is horrible.
If you find anything else that helps please let me know I'd love to find something else to help.
Sure looks JUST like it to me. I get the rash...and even a much worse one with swollen blister type sores...at various times not only dependent on the amound of sun I get...but apparently the "stages" my Lupus is in. I cannot be in the direct sun for more than 10 minutes at a time when my Lupus is in a flare. I am so reactive to the sun ( and have been for at least 25 years) that I had the UV coating put on the windows of the car I drive the most often. I also get this rash and sores on my head if I am not careful enough. I purchased a UV protected hat...a UV long sleeved shirt...and also UV protective sleeves I can wear with a short sleeved shirt. They help tremendously...but can be a bit hot in really warm weather. My rheumatologist told me to only use the sun screen products for infants as my skin is SO reactive. I will see if I can find a pic of my rash at it's nastiest and include it with this response. My doctor is some distance from me ( a 2 hour trip one way) so he asks me to send him pics to see if he can come up with a plan and save me the drive unless absolutely necessary. My reaction to the sun has grown worse over the years...and also dependent upon how much prednisone I am on. I have had Lupus most of my life...and the first 60 years of it...I did NOT get the rash this badly. I have been one of the fortunate ones who has survived without DRASTIC damage early on. Do all you can to diminish the effects of the sun as I think it triggers a worse flare when you have not. Best of luck to you...and stay as positive as you can possibly be. I am convinced it helps tremendously and that stressing causes more problems.
125-100_2116.JPG (1.71 MB)That is what mine always looks like.
Hi AGM...Sorry you have Lupus...happy you found this site to get information on. That certainly looks like every lupus sun rash I have ever had...and I get even worse ones as I age...so best to learn how to best protect yourself early on. I tried to answer this post yesterday...and included some pics of mine at it's worst...but my computer froze up and would not perform...so I am trying again today. I am 69 years of age and have had Lupus most of my life. The serious sun rashes had not developed to the degree I am including pics of until after I passed 60 years of age...and also after I was on prednisone for months and actually years now...without being able to be off it very long at all. I have found several ways to cope with it most of the time...but deep summer is always problematic for me. You can buy UV protective clothing and hats to wear when you must be exposed to much sunlight. They also have just sleeves that stay up well for when you wear short sleeved tops. The items can be expensive but I have found some good bargains that help me very much when things are on sale so check the UV apparel websites frequently. My Dr. suggested (because of my extreme level of sun sensitivity that I only use sun screen intended for babies...of which I have found Coppertone and Banana Boat to be the best for me. I have also had UV protective screening put on my three front car windows...as I REALLY suffer from sun exposure. I will try to add pics again...and wish you the best of luck in your treatment of the sun exposure. I believe personally that when you are already IN a flare...the sun effects you more seriously...and also...too much sun exposure leads to a flare if you were not already in one...so it seems pretty important to me. I too get the headaches, nausea and worse fatigue than usual...and also burning and horrible itching in the affected skin. Wishing you the best in your search for protection and treatment for the skin rashes. Not to add insult to injury...but I have also gotten these rashes on my scalp...and they are horrid! A fellow Lupus sufferer.
123-100_3951.JPG (2.39 MB) 124-100_3949.JPG (1.76 MB)Thank you all for your comments and support. I was diagnosed with lupus, Hashimoto's and degenerative disc disease all at the same time. It's been overwhelming for me!! I'm trying to learn as much as I can about all of these illnesses. It's hard to know what is lupus, what is Hashimoto's and what is a side effect of medication used to treat everything!! I'm currently taking 19 pills a day. I use a weekly pill organizer with slots for morning, noon and night. I also set alarms on my phone to remind myself to take my pills. I definitely have the confusion, "foggy" head that I've heard that people with lupus have. At the beginning of all of this I frequently forgot to take my pills. I'm so glad I found you all!! Thank so much
AGM...I am not familiar with Hashimoto's...but I also have degerative disc disease, stenosis of the spine, and both kinds of arthritis in my knees and beginning elsewhere. From all I have heard from other Lupus folks...these various ailments all congregate in Lupus patients. Hang in there...I did...and I am now down to only 13 pills a day...and maybe going down one more time. We all focus on the negatives of this disease...and we need to remember the positive's also. It is not always bad all of the time. We get good days and good periods amongst the bad...and we are alive and able to discover new methods of comfort or help. Not everyone is. Keep that chin up as you learn...and holler to us when you need to.
Thanks, Karen. I also have spinal stenosis and am beginning epidural steroid shots one week from today. Have you ever had those?
Hashimoto's is also an autoimmune disease. It attacks, and eventually kills, the thyroid gland. I take thyroid pills to try to replace what my body can't produce. It causes a lot of the same symptoms as lupus so some of my symptoms are pretty much doubled. Fatigue, hair loss, dizziness, confusion, mental fogginess, etc. Neither of these diseases is any fun.
Since I was just diagnosed none of my illnesses are under control. I've heard there are good and bad days, I'm waiting for some good ones. I could really use them.
KarenK said:
AGM...I am not familiar with Hashimoto's...but I also have degerative disc disease, stenosis of the spine, and both kinds of arthritis in my knees and beginning elsewhere. From all I have heard from other Lupus folks...these various ailments all congregate in Lupus patients. Hang in there...I did...and I am now down to only 13 pills a day...and maybe going down one more time. We all focus on the negatives of this disease...and we need to remember the positive's also. It is not always bad all of the time. We get good days and good periods amongst the bad...and we are alive and able to discover new methods of comfort or help. Not everyone is. Keep that chin up as you learn...and holler to us when you need to.
Yes! I am terribly sensitive to the sun… Only a few minutes in the sun gives me the symptoms you mentioned … For me , too much sun will trigger a "flare ".
I get that exact rash as well. I’ve gotten it for years and never knew it was even a “rash” until being diagnosed this year. I don’t have itching or any other skin problems though, so mine must obviously be mild. I’m doing everything I can to keep it that way with Sunscreen and protective clothing.
