I miss the sun!

I know they say the sun is the worst thing for us, but I’ve been diagnosed for many years and didn’t have a bad reaction to the sun until the past couple years. Is it the lupus or the medications that give us the horrible reactions? I would love some color again! Is there any hope??

I’m afraid it can be both, Laura. My rheumatologist tells me that sun is usually the biggest reason for a flare, and that has been my experience living here in south Florida. Ironically, one of the side-effects of methotrexate, another prophylactic drug I take weekly for SLE (systemic lupus), is photosensitivity (sun exposure). Consequently, I take my crew to the dog park only very early morning or late in the afternoon, and walk them at night when I have the energy. Booze is another big trigger for flares, but I swore off that vice years ago prior to my diagnosis, after suffering a couple of weeklong, flu-like hangovers from anything more than a glass of wine. My rheumy later explained to me that these were more likely flares caused by the alcohol rather than hangovers. I miss being out in the sun (and occasionally my booze too), as it really helped with my recurring clinical depression, but it explains why my symptoms accelerated big-time after I had a pool built in the backyard of my last house and would regularly lie on my float drinking pina coladas with my girlfriends. These days, the only way any good dirt gets shared is on my patio, under the stars, as we sip flavored coffee with whip cream. Oh well, I guess my youth was wasted an age too tender to appreciate. :slight_smile:

I have discoid lupus but I’ve had a couple of my doctors say they believe I either have, or am starting to morph into systemic.
I was thinking that maybe, since the sun didn’t seem to bother me so much until the past couple years, that it was more due to either the plaquenil or the steroids making me more sensitive. I guess that was just wishful thinking!
I wish it wasn’t so because I hate being so pale! Lol plus, a tan used to help hide my rash and I can’t stand airbrush tan …too much work! Lol
My father lives in Florida and the last time I was there in july, I was on a lot of steroids since my 1 seem gave me the sunblock that she slathered all over my chest and face without doing a patch test first and I looked like I had a chemical peel 2 days later lol
Needless to say, that trip was hard…staying out of the sun in Florida in July lol idk how you do it all year!

pjarden said:

I’m afraid it can be both, Laura. My rheumatologist tells me that sun is usually the biggest reason for a flare, and that has been my experience living here in south Florida. Ironically, one of the side-effects of methotrexate, another prophylactic drug I take weekly for SLE (systemic lupus), is photosensitivity (sun exposure). Consequently, I take my crew to the dog park only very early morning or late in the afternoon, and walk them at night when I have the energy. Booze is another big trigger for flares, but I swore off that vice years ago prior to my diagnosis, after suffering a couple of weeklong, flu-like hangovers from anything more than a glass of wine. My rheumy later explained to me that these were more likely flares caused by the alcohol rather than hangovers. I miss being out in the sun (and occasionally my booze too), as it really helped with my recurring clinical depression, but it explains why my symptoms accelerated big-time after I had a pool built in the backyard of my last house and would regularly lie on my float drinking pina coladas with my girlfriends. These days, the only way any good dirt gets shared is on my patio, under the stars, as we sip flavored coffee with whip cream. Oh well, I guess my youth was wasted an age too tender to appreciate. :slight_smile:

Correction: it was supposed to say my 1 derm but my iPhone changed the word on me lol

Laura said:

I have discoid lupus but I’ve had a couple of my doctors say they believe I either have, or am starting to morph into systemic. I was thinking that maybe, since the sun didn’t seem to bother me so much until the past couple years, that it was more due to either the plaquenil or the steroids making me more sensitive. I guess that was just wishful thinking!
I wish it wasn’t so because I hate being so pale! Lol plus, a tan used to help hide my rash and I can’t stand airbrush tan …too much work! Lol
My father lives in Florida and the last time I was there in july, I was on a lot of steroids since my 1 seem gave me the sunblock that she slathered all over my chest and face without doing a patch test first and I looked like I had a chemical peel 2 days later lol
Needless to say, that trip was hard…staying out of the sun in Florida in July lol idk how you do it all year!

pjarden said:
I’m afraid it can be both, Laura. My rheumatologist tells me that sun is usually the biggest reason for a flare, and that has been my experience living here in south Florida. Ironically, one of the side-effects of methotrexate, another prophylactic drug I take weekly for SLE (systemic lupus), is photosensitivity (sun exposure). Consequently, I take my crew to the dog park only very early morning or late in the afternoon, and walk them at night when I have the energy. Booze is another big trigger for flares, but I swore off that vice years ago prior to my diagnosis, after suffering a couple of weeklong, flu-like hangovers from anything more than a glass of wine. My rheumy later explained to me that these were more likely flares caused by the alcohol rather than hangovers. I miss being out in the sun (and occasionally my booze too), as it really helped with my recurring clinical depression, but it explains why my symptoms accelerated big-time after I had a pool built in the backyard of my last house and would regularly lie on my float drinking pina coladas with my girlfriends. These days, the only way any good dirt gets shared is on my patio, under the stars, as we sip flavored coffee with whip cream. Oh well, I guess my youth was wasted an age too tender to appreciate. :slight_smile:

Well I know that UV rays trigger Lupus. I get quite a bit a sun still. I drive alot and refuse to stay at home. Sometimes the sun feels good sometimes I have to hide from it! I take shalls with me to cover up if I have to.

Oh and yes the prednisone makes your skin sensitive! I am also on a sleeping aid that does the same. I think its just different for everyone…

You're right, I got fried once when I was on what I consider lupus morphine, Prednisone. Those were the days. I immediately felt so much better only a couple of hours after I took my first dose of Prednisone after finally being diagnosed with SLE. For a few years before, I had so much joint pain that my hands and feet constantly ached and my knees deteriorated so much that I often collapsed when I climbed stairs or tried to stand from a sitting position, especially from a toilet or any low seating situation. After several months, once I was stabilized and on prophylactic medicine like methotrexate, Plaquinil and some infusion I got monthly in my first couple of years, my old rheumy titrated me off the sweet nectar. While I've never experienced the same intense level of pre-diagnosis pain again, I still Jones for it like a junkie when I flare or my joints are particularly stiff and sore. Unfortunately, my new doctor is like the stereotypical drug pusher in an after-school special and only stingely and sparingly prescribes it when my body is completely strung out from a blood-test-proven flair or I'm hospitalized for something lupus related, which fortunately has been only twice since being diagnosed about four years ago. pax & hugs, pj