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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has anyone else’s photosensitivity become more severe and continues to increase in severity? Anyone else developed anaphylactic reactions?

A MyLupusTeam Member asked a question 💭
Gloucester, MA

This is on top of the common flare ups that usually comes from UV exposure
Even with all the numerous preventative measures and trying to limit my UV exposure as much as possible, I tend to now need to resort to an EpiPen once a month at the very least for anaphylaxis. I also tend to need to take Benadryl almost daily, which doesn’t help with the normal brain fog but it beats the feeling of an EpiPen
None of the many doctors I see/seen (minus my Dermatologist) have been any help or really… read more

September 26
 · 
Be the first to react
MyLupusTeam

First, it's important to say — what you're going through sounds absolutely exhausting, and your feelings of fear and frustration make complete sense. You are not alone in finding that photosensitivity can worsen over time with lupus.

Many MyLupusTeam members have shared similar experiences of escalating sun sensitivity. One Show Full Answer

First, it's important to say — what you're going through sounds absolutely exhausting, and your feelings of fear and frustration make complete sense. You are not alone in finding that photosensitivity can worsen over time with lupus.

Many MyLupusTeam members have shared similar experiences of escalating sun sensitivity. One member shared, "The biggest trigger of all is the heat and the sun," while another said, "I get nauseous and weak, and my joints ache even when driving in the sun." The emotional weight of losing independence is something many in the community deeply understand. Regarding medications, it's worth knowing that some commonly used lupus medications can actually worsen photosensitivity, including:

- NSAIDs like ibuprofen or naproxen
- Hydroxychloroquine (Plaquenil) — while it can reduce UV damage for some, others find it increases sensitivity

Since Benadryl is also affecting brain fog, this is absolutely worth raising with your dermatologist, who already seems most engaged in your care. The anaphylactic reactions you're describing are serious and deserve urgent, focused medical attention. If current doctors aren't helping, advocating for a referral to a specialist who has experience with complex lupus cases is a reasonable and important next step — your dermatologist may be the best person to help push for that.

You deserve a care team that truly listens. Please keep advocating for yourself. 💙

September 26

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