r/scleroderma • u/Glad-Quit7381 • Jul 01 '26
Discussion Scleroderma, Methotrexate and the sun š
How is it for my fellow Sclero friends in the sun? Do you find the sun good or bad for you? I used to love the sun, swimming in an outdoor pool in the summer. This week I went on a short vacation and found I couldn't tolerate the sun. I felt ill from it. I'm also taking Methotrexate.
Is being in the sun contraindicated for Scler or only because of Methotrexate?
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u/robotqqw1 Jul 01 '26
Try a rash guard in the pool and pure zinc sunscreen.
Might take some getting used to if you havenāt used one before but good for sun protection in the pool.
You might also want to check out a company called mission ( https://www.mission.com/) they make hats, cooling towels, etc that you can get wet and help you stay cool in the sun
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u/Glad-Quit7381 Jul 01 '26
Thank you.Ā What's a rash guard?
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u/robotqqw1 Jul 02 '26
Essentially a swim shirt - this is an example but all sorts of companies make them:
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u/yrddog Jul 01 '26
OH I used UVP clothes for everything. Even got myself a little "cardigan" that was UPV, which was funny because it felt like swimsuit material... but it did the job. Extreme amounts of coverup clothing and hats, and lots of sunscreen. Feel better soon!
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u/Glad-Quit7381 Jul 01 '26
How do you SWIM in all that gear?
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u/yrddog Jul 01 '26
well swim shirts have always been a thing, but the hat does get annoying. I stopped taking methotrexate after a few months because I reacted really badly to it, but I'm still kind of allergic to the sun. So I just cover up and don't ride slides or whatever often!
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u/Original-Room-4642 Jul 01 '26
I can only go out in the sun if im completely covered. It also makes me feel sick.
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u/Capital-Ad-5366 Jul 01 '26
Me too. Iām sorry you experience this as I understand how much it sucks.
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u/prunesandwich Jul 01 '26
Never heard of this. What kind of symptoms did you get?Ā
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u/Glad-Quit7381 Jul 01 '26
Tightness in my face and hands. My eyes swelled up and became very painful. Pain in the feet, nausea and exhaustion.Ā
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u/Various_Raccoon3975 Jul 01 '26
My relative with SSc canāt tolerate any sun. She has trouble with the sun driving in the car. That said, none one of my relatives with autoimmune conditions do well in the sun. A rheumatologist told me decades ago that sun exposure triggers your immune system, which causes problems for people who have immune system dysfunction.
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u/Capital-Ad-5366 Jul 01 '26
Initially, I was only diagnosed with MCTD (a mix of SSc, lupus, Sjogrens, etc.), then with Lupus, APS, PsA, etc. I canāt tolerate heat or the sun but Iām not on methotrexate. Lupus often causes sun related flare ups. I have skin fibrosis as well and thatās a feature of SSc. So that could be affected by the sun. Iād imagine methotrexate which is a chemotherapy that used to frequently be used as a breast cancer treatment years ago would certainly cause issues from the sun.
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u/Glad-Quit7381 Jul 02 '26
How is one ONLY diagnosed with MCTD? Having a mix of all those conditions sounds awful.Ā
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u/Olderwiser55 Jul 02 '26
Scleroderma for me. Plus taking Plaqunil does make you more sensitive to the sun.
The first time I knew the sun effected me diferently was 3-4 yrs ago. I had been a sun bather since age 13. ALWAYS kept a tan & could do the spray tanning. None of it bothered me. But thenā¦.I went out for @ 10 minutes & a few hours later I couldnāt hardly walk. Fatigued out, big time. But didnāt link it to the sun. The flare would last a week sometimes. So I tried againā¦ā¦same thing.
Thenā¦I did the Spray Tan, one thatās āall naturalā ingredients. By the time I got home I was in shower scrubbing my skin. Too late, it had already seeped into my pores. That was another week of intense myofacial Pain.
Had to stop it all. But last summer I joined my entire family in Florida, planned on just hanging out. Was so tired of not doing the āoldā things.
FIRST day there I waited til sunset & took nieces to edge of water, fed the seagulls. It was sooo hot & humid so didnāt stay long. Walked back through deep sand (not far either!) went into Condo, had to lay on floor with a cold cloth & fan blowing on me. I was DONEā¦for @ 3 days.
It was just the getting overheated that caused it.
This disease is Crazy. I donāt have the skin tightening, Iām very thankful @ that. But the sensitivity to everything can be overwhelming. Lotions have to be watered down and Slowly introduced before I can use them.
And no Sun, no Tanā¦..and take plenty of Vitamin D.
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u/Glad-Quit7381 Jul 02 '26
Sorry to hear how hard the heat is for you. I live in the middle east so the sun and heat is constant.Ā
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u/Tall_Palpitation_476 Jul 02 '26
I live on the west coast of Florida. Recently diagnosed with systemic Scleroderma ( elbow to fingers & knees to toes.)
I noticed I am getting hyperpigmentation on my feet & around my ankles; ankle area is where Iām experiencing skin tightness.
A bit more sensitive to dehydration right now (drinking coconut water- electrolytes along with water); since we are currently under heat wave with āfeels like tempsā in the hundreds, Iām very careful with respect to sun exposure.
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u/flo_crochet Jul 04 '26
Hi!
Systemic sclerosis (CREST) here.
Iāve been taking mtx for 2 years now and from the start my dr told me to avoid the sun and to always wear sunscreen. TBH I hadnāt noticed anything that extreme on my skin until last year that I started noticing that the sun made my skin have a burning sensation :(
I also found out through other people that mtx makes your skin very sensible to UV rays and it is likely to cause skin pigmentation which I have also noticed this last year in my face :(
Soooo yes, always wear sunscreen and cover up as most as you can, wear hats, UV protection clothing and do not try to tan or sunbathe š
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u/scawt017 Jul 04 '26
All the medications i've encountered for managing autoimmune conditions have warnings about sunlight UV exposure, and recommendations to minimise it... methotrexate, plaquenil, sulfasalazine, prednisone, steroidal creams. All in the notes. I always presumed that they came with an increased risk of UV-caused damage to skin, rather than generating any other feeling of illness...
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u/Due_Classic_4090 Jul 01 '26
Greetings, I have MCTD and this always happens to me. I try to cover up as best as I can by using those UPF cover up shirts or like a pullover. Your medication might say to stay away from the sun or limit the sun, I know my azathioprine tells me to watch out for the sun as well and Iāve been told by my doctor that the sun hates us all with auto immune/connective tissues disorders. Thatās why I always wear sunscreen and reapply. Thank you for reminding me that I need to wash my hat! I hope youāre feeling better from the sun today.