Flares and sunshine

[Kevin53]

If flares are related to sunshine.

After our excellent Summer did you experience more or less flares in the Summer of 2018 than the Summer of 2017 (when average sunshine was 95%)?

Best wishes Kevin

[Penguintaz]

I had less Probably because I was aware this year and I was covered in sunscreen with sunglasses always on. I hope others were able to keep themselves protected X

[DJK99]

Hi Kevin - as a relatively newly diagnosed person I found it very difficult this year. I've got heart issues too which generally doesn't enjoy extremes of temperatures.. but I flared several times this year, until I got the message.... don't go out in the sun unprotected - even for 10 mins. But I got caught out. I spent three days in bed at one point and a day or so about three other times, but just generally struggled with it - my skin felt like it was on fire most of the time... v unpleasant.. and the exhaustion and thirst (funnily enough) was even worse than usual. As for other years I've always worn factor 30 or 50 since my teen years (and it was very expensive and hard to find in those days) as I tended to burn easily, get crispy shoulders (Iiterally on my first jaunt abroad) and rashes on my arms. If I go abroad in the sun since I always wear a hat and cover up keeping out of the sun with the factor 50 slathered on regularly. So I say -yes, I flared more... however the Lupus has got much worse in the last year, the headaches//exhaustion/joint/tendon/muscle side of things especially.. and maybe i was more aware as I had the diagnosis....so I think i was probably flaring previous years having been in the sun - but just thought I was generally exhausted by work/heart stuff. Blather. Clear as mud . Hope that helps. D

[maggielee]

Hi Kevin, visiting in your parts for a couple of days for work....🌞🌞🌞The sun is shining & i am wearing 2-3 layers, 50 factor....driving back i cover up even more with driving gloves (fingerless), sun jacket with hood & always scarves... So this summer i avoid uv even more & when it began to rain ☔ i slowed down & faced the rain above & thought how nice it was....this from a former sun worshipper 🌄🌅....

Flaring is hard to pin which autoimmune is causing more problems Lupus or sjorgrens....i cover my skin & avoid uv as much as possible so no notable rashes.... The facial pain???? The headache probably relating, tiredness to the point of wanting to not get out of bed.....could I be feeling worse at the end of gloriously sunny summer, I think so.... If you know UV can make your life worse you live/work indoors and the garden goes to weeds......🌹🌹🌹🌹🌹 ⛅ah what a summer....😎 hope u are well...ML

[imkeener]

Hi, Kevin

sunshine is one of the important triggers of lupus flares. I rarely go out in the afternoon (from 11 am- 3pm). but if I must be outside, i always apply sunscreen and wear glasses as well as wide- brimmed hat. Besides, it's very important to boost your immune system. As long as your immune system is good, this can help limit your trigger. Eating healthy diet, avoid unhealthy routine and take supplements to promote your immune system. These help me more to reduce lupus triggers

[Annethlowen]

It was quite a challenge Kevin I stayed in most of the time but if I needed to go out I was smothered in factor 50+ and covered with covered long sleeved clothes and a sun hat.

[Latincarib]

I experienced a an increase this year, especially on shoulder down to my arms. It's only now starting to heal back. I didn't want to miss out on the beautiful summer, I used actor 50 Sun cream as often as could , but on occasion need that Vitamin D intake so went without some days and truly sufferred

[suzannah16]

I have so far never had skin reactions to the sun so no change this year in that regard. the weather improved my arthritis, which I expected, but also drastically reduced my lupus fatigue. the fatigue kicked in the moment the weather [Scotland] returned to normal 15 degrees

[tini44]

Hi Kevin

I think I was worse last year had dermatology every 3 months, this year I am now every 6 month. Still on max.dose off hydroxychloroquine and steroid cream. But I find when I cover-up or I get hot my skin also breaks out.

[eekt]

I'm not (YET*) photosensitive and uV seems to have a benefit, both in reduction of my skin rash and in my dsDNA results, though in Scotland sunlight tends to taper gently in and out...🙄 I'm making the most of it while I can. 💥💥💥💥

My Rheumy laughed when I asked about uV therapy (readily available the local general for psoriasis) as there is some (very limited) research into remission-bringing results, as well as Vitamin D3 reducing inflammation. Visibly in my case, I have inflammed eyelids that revert to normality (in size and colour - otherwise white...something I have in common with President Trump!...🤣 ) after sunlight exposure.

After being humiliated by R once again, I wrote to the lead author of the BSR Guideline and she responded thus:

"For an individual like you who has no evidence that UV light has been involved in your disease it is obviously acceptable not to use sunblock, although I would recommend it still in very sunny weather as with everyone to avoid skin cancers."

* the brilliant Melba1 pointed out this can change! ⚠️☢️🚫

Great topic Kevin, thanks! xxx

[Nelly10]

Hi Kevin

I had a hard time this summer... I am still waiting for my rheumy to start me on treatment and I haven't seen my dermatologist for a while. I have a rash all over my nose, near my eyes, chin and cheeks. Very sore. I have kept out of the sun as much as possible and always wear full sunscreen. I have found it exhausting this summer, pains in joints, etc.

Have an appointment for rheumy 27/10.

I was prescribed Dacortin a while ago for when I have flare-ups. However, was told to only take them for 6 days at a time and reducing each day. I do get some side effects and I can't tolerate them for longer. My skin is worse than ever, feeling miserable and fed up with it.

Sorry for whining, I live in Spain and we are still having hot sunny days!!