Did you experience more frequent and/or severe lu... - LUPUS UK
Did you experience more frequent and/or severe lupus flares during the hot summer 2018 compared to summer 2017? (Please explain in comments)
I can't compare the two because last year my Lupus was relatively uncontrolled whereas this year it is more controlled. I tolerated sunshine better this year. But I really struggled with the heat, particularly during the heatwave. I was not able to go out which meant my partner had to take time off work to look after our child who was on their summer holidays.
Last year I had no knowledge or awareness of lupus as I am only recently been investigated; waiting on my first rheumatologist appointment.
I'm very uv sensitive, so I avoid going out in sunshine. I thought I was well prepared for summer this year but the heat floored me! My skin felt like ants were crawling all over me and became quite inflamed. Plus I noticed an increase in fatigue and swollen joint's. My dermatologist gave me a 2wk course of steroids and steroid creams to calm things down. The treatment did help.
I have never had any problems with the sun before this year. Went on holiday to menorca and ended up with a photosensitive lupus rash and a flare which put me off work for about 8 wks and I’m still trying to get back up to my 12 hrs a week slowly as still not 100%!
Had to have my steroids and immunosuppressant increased and a depo steroid injection
I’ve only been diagnosed a year and had at one point previous to this thought I may be allergic to being outside !! The direct sun this year def seem to have put towards flares.. for caused a mottled rash on legs , swollen ankle ,swollen knuckles, protein in my urine and a myriad of other things..my hair didn’t fall out and the fatigue hasn’t been as bad as previous summers though but at times I felt very unwell ...all while desperately trying to cope with work load...
Since diagnosis, this summer was the worst I have experienced. I am severely UV/ light photosensitive, so avoid going out, but the heat and humidity tipped me over into a very aggressive flare, I ended up with pleurisy, and then pneumonia. Steroids have helped, but I am still in the throes of a flare, joints, skin, and fatigue stubbornly refusing to abate. If I win the lottery I am moving to Siberia!
Sorry I meant to add..the meds I’m on have helped tremendously with fatigue stiffness and hair loss..
Not really had any problems before during the summer but this year was Hell! I've become very uv sensitive and have had months of being really poorly even though I'm still getting negative ANAs etc. I've started getting really horrific facial rashes and facial swelling that looked and felt like I'd had a kettle of boiling water thrown in my face. My dermatologist tells me I've become UVB sensitive and now I'm waiting to go up to London in October to see a photosensitivity dermatologist. It made me depressed and angry also embarrassed. I've developed really bad fatigue, my sleeping problems are worse, trying to carry on working has been VERY difficult. I'm just lucky not to have been caught keep sneaking in late. The rest of my bodies skins has been playing up too. I've had really bad and endless headaches. For a while I could by control my core temperature either. Things are slightly better now. I don't think I'll ever cope with heat like we had again. 😨
I hate the sun and heat I think they hate me back
I had a very severe flare that lasted the entire summer, 4 months. Lots of pain and fatigue. It's just now starting to ease up a bit.
I felt much better this summer! It was a treat to have so much sun in Scotland. My mood was much better. It was the first summer for the last 10 years since I was diagnosed with SLE when my feet felt “normal” not “frozen “. It definitely helped my severe Raynaud’s symptoms. I was just alive and happy last summer.
My symptoms were both more frequent and more severe, particularly my fatigue. I don't tend to get typical Lupus rashes, but can get "boil like spots" on my face, which in past have often been triggered by sun light, but any problems I get on my face were better this year.
The sunny weather actually made me very conscious to take care in the sun, so this year I think I actually had even better sun protection, and was even more "sun sensible" than 2017. My worsening symptoms are possibly also a combination of factors such as extra stress I've experienced all year
I suffered Red painful rash to face, neck and hands despite Maximum sun protection measures. Extreme fatigue. Mouth ulcers, increased abdominal pain. Excessive insect bites causing swelling, redness & pain to both lower legs. Completely intolerant to heat anyway but very moody and headaches forcing me to lie down. I actually dread all four seasons as the sun becomes lower and shines in house & car triggering symptoms most days. Whole new meaning to a sheltered life.
I find that extreme heat or cold leads to flares for me, but heat especially. This lovely weather is affecting me, too, because it is hot by day and is so cold at night and in shady parts in the day, too. The extremes affect me. A lot of log fires/burners around my area and I notice and am affected by the pollution in the evening when traffic bad, too. I always used to go out this time to get some fresh air when the sun is not so strong, but can't stay out there now, sadly.
I thought we were heading in the direction of cleaner air in this country, but realise now that this is not a priority, sadly.
I'm not (yet) photosensitive and uV seems to benefit me at the mo. The wonderful Melba1 let me know I should watch for this changing. My rash completely disappeared over the summer and starting growing again as soon as the sunshine was gone. My dsDNA goes down with sunlight exposure.
More in 2018 than in 2017 because last year I was pregnant and my pregnancy was wonderful. No flare. This year the sleep deprivation has my body in horrible pain. All lupus.
