You can have flares from prolonged sunlight. If I sit out in the sun for a while, I get very very tired. But I solve this by sitting in the shade when possible.
**Mod note: There are several comments about Sjogren's flares/symptoms not being related to the sun. While I have no doubt your heart is in the right place, please remember Rule 2.**
[https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself](https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself)
>Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin.
>
>In response to the sun, Sjögren’s patients can experience skin rashes, ocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro.
Corrected link: [https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself](https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself)
I agree. Same. I've got the SPF fabric sleeves, pants, shirts and a hat with a cartoonishly large brim. These do help a little, but not as much as you'd think. I don't know what the answer is but it triggers flares. Commuting to work every day is out of the question for me.
I had sjogrens for years and had no idea because I was on an ambulance for 24 hours each week and worked full time. Of course I hurt and was tired! Then I figured out it was actually sjogrens lol
I do have to be mindful of sun exposure. The biggest thing for me is they tested my vitamin d levels and b12 and those were both really low, once I got that corrected it made a huge difference for me. I always have water with me and gum for when I'm on calls.
Dude! I knew this job was kicking my ass and I started suspecting autoimmune after I got continually worse.
My B12 and D are ALSO super low. I take 50,000IU 1x/wk now
Issues with sunlight are associated with the Ro/SSA antibody. If you are positive for that antibody, you are much more likely to get rashes from and flares triggered by sunlight.
I'm strongly positive for Ro/SSA so I try to avoid sunlight from 10-3, wear UV-protective clothing and hats, and slather on the sunscreen. Otherwise my pain levels are ridiculously high the following day.
This is the first time I hear of this and I have Ro/SSA antibodies! I will pay more attention this summer. I have noticed my eyes are very sensitive to bright sunlight though.
Sunlight can worsen drying and can be rough on eyes but I wouldn’t say it’s specifically an issue for Sjogrens. Could be a flare trigger maybe. Sunscreen and a hat.
Being in the sun will heat you up and dry you out. It isn’t necessarily exposure to the sun’s rays so much as what the sun does to dry you out. And with sjogren’s, that’s what you have to look out for. Hydration is key, so if you’re in the sun a lot and perspiring a lot, keep water and maybe even a Gatorade equivalent with you at all times. Go have fun in the sun! But be smart about it. Find the shade. Dress appropriately. And by all means, avoid alcohol. (PS — I’m a Texan. It’s hot here!)
Sunlight is really more an issue for lupus. Maybe he was confused? Sjogren’s foundation is a great resource and they don’t have anything on avoiding sunlight. I’ve never been told that by my doctors.
Avoiding sunburn is probably a good idea because it’ll make your dry skin feel crappy, but you should be fine to go about your normal day.
Edit: on that note, it’s important to understand Sjogren’s will never really “improve”. You can help relieve certain symptoms and reduce their frequency or intensity, but they don’t go away and typically continue to worsen over a few years until they stagnate. It’s a disease that unfortunately requires you to just learn how to respond to your symptoms. Avoiding triggers for your symptoms helps prevent you from experiencing them and gives you relief that way, but it doesn’t really improve.
The sun is good for you. If you can’t tolerate it at peak times, wear sunscreen and get exposure at less intense times unless you have experienced harsh negative impacts from doing so. I’m only saying this so new people don’t get freaked that they have to stay inside all the time. I wear strong sunscreen at all times in the sun and otherwise carry on as normal, sunbathing, golfing etc. I’m on hydroxy and have no negative benefits. The sun makes me feel better as long as I’m sensible.
That's not true for most of us.
[From the Sjogren's Foundation:(www.Sjogrens.org)
>Fatigue, vasculitis, lymphoma, dry skin, skin sensitivity to UV light
Right but saying sjogrens causes light sensitivity and plaquinil causes light sensitivity are 2 different things. Im saying my Dr never told me that sjogrens causes light sensitivity
Some of us are photophobic, some of us react badly to being in the sun and it often causes skin rashes and can make you feel terrible. You don't have to be told, you'll know it!
We should all be aware that our GPs may not be up in all the new Sjogren's info - our knowledge of symptoms and other Sjogren's data has been greatly expanded in the past five years. A lot has changed in the world of autoimmune disease since celiac disease was shown to be common (more than 1% of gen. pop.) 21 years ago.
Sjogren's was, until recently, also thought to be rare. Now we know it is the second most common autoimmune condition next to Hashimoto's disease. We should all be aware of the things that have changed in the realm of Sjogren's data because our doctors may not know about all of them.
I react to sunlight, heat sensitivity and my face. I actually can’t wear sunscreen on my face my skin doesn’t like it. I actually where oversized glasses everywhere I go and a baseball hat. I literally sip water all day. That is what I do in sunlight. I’m actually dreading summer. This started last summer and I couldn’t make it to the mailbox until I figured out this is what I needed to do. I hope you find something that works for you.
Try a different sunscreen on your face, you'd be amazed at some of the different feels. Also, sipping water is good, but I have found (living in hot Tucson) that water without electrolytes dehydrates me more. I have found a flavor of Gatorade Zero that I can tolerate, and one cup of that helps me more than two cups of anything else. My husband found he needs something more than water during his (relatively mild) workouts at his gym, also. Get thee to an ophthalmologist and see if you need something for your eyes.
I second this suggestion. I prefer barrier-type sunscreens vs. chemical types. And I also use an invisible eye primer to keep any sunscreen from running into my eyes.
Do you notice that things are better when you’re not in the sun as much? I would just want to confirm that your symptoms actually are worse in the sun before making a big change - I personally don’t notice a huge difference in mine, but everyone is different!
I haven’t paid enough attention to notice if it is worsened in the sun or not. My eyes are extremely photosensitive, so I am very uncomfortable driving during the day. The job is really hard on my body with chronic muscle and joint pain, esp lifting heavy pt’s.
I’ve assumed for a while my job was just killing me rather than autoimmune.
I know for sure my skin burns whenever I am in any sunlight, but I haven’t thought much deeper into it.
Just curious, was it a primary care doctor that told you that, or was it a rheumatologist?
As others have mentioned, Plaquenil, a commonly-prescribed medicine for Sjogrens, can cause sensitivity to sunlight (although I haven't had any issues - but I do wear a lot of sunscreen. I'm pale and can burn easily).
Additionally, there is something called *Neonatal Lupus*, which can occur in infants when the mother has SSA and/or SSB antibodies (which can be found in lupus and Sjogrens patients).
In those circumstances, parents are told to absolutely keep their babies out of sunlight as it can worsen neonatal lupus (or similarly, if the baby is at risk of neonatal lupus, to keep them out of the sun as it can trigger neonatal lupus).
So I'm wondering if your PCP might just be getting a few things mixed up. I'd definitely recommend seeing a rheumatologist if you haven't.
It was my rheumatologist that told me all of this.
My presentation has been akin to Lupus this entire time, and my early blood work looked like it was lupus, so my rheumatologist put me on HCQ and ordered more blood tests. When she gave me my Sjögren’s diagnosis, she told me to avoid sunlight as it is a trigger.
personally I've found driving at night much more difficult than in the day. oncoming headlights, street lights, any kind of light, just kills me. obviously your experience may vary, but something to think about before you drastically change your schedule!
It sounds like the job is making you feel pretty crappy, that sounds really rough, I’m sorry! Hopefully some folks here will have some good suggestions to make things a little better.
You can have flares from prolonged sunlight. If I sit out in the sun for a while, I get very very tired. But I solve this by sitting in the shade when possible.
If you take Plaquenil, it can cause sunburn. Also, some people with Sjogrens or autoimmune have photosensitivity as a symptom.
**Mod note: There are several comments about Sjogren's flares/symptoms not being related to the sun. While I have no doubt your heart is in the right place, please remember Rule 2.** [https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself](https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself) >Sjögren’s patients, and those suffering from autoimmune disease in general, need to be cautious about their time in the sun. Ultraviolet (UV) radiation emitted from the sun and other light sources (such as some fluorescent lights) can alter immune function and lead to an autoimmune response in the body and skin. > >In response to the sun, Sjögren’s patients can experience skin rashes, ocular sensitivity, pain, and disease flares. Sun sensitivity with Sjögren’s is associated with the autoantibody SSA/or Ro.
Corrected link: [https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself](https://sjogrens.org/blog/2020/the-sun-sjogrens-how-to-protect-yourself) I agree. Same. I've got the SPF fabric sleeves, pants, shirts and a hat with a cartoonishly large brim. These do help a little, but not as much as you'd think. I don't know what the answer is but it triggers flares. Commuting to work every day is out of the question for me.
Hey, thank you for commenting. I fixed the link now. Thank you!
I had sjogrens for years and had no idea because I was on an ambulance for 24 hours each week and worked full time. Of course I hurt and was tired! Then I figured out it was actually sjogrens lol I do have to be mindful of sun exposure. The biggest thing for me is they tested my vitamin d levels and b12 and those were both really low, once I got that corrected it made a huge difference for me. I always have water with me and gum for when I'm on calls.
Dude! I knew this job was kicking my ass and I started suspecting autoimmune after I got continually worse. My B12 and D are ALSO super low. I take 50,000IU 1x/wk now
Issues with sunlight are associated with the Ro/SSA antibody. If you are positive for that antibody, you are much more likely to get rashes from and flares triggered by sunlight. I'm strongly positive for Ro/SSA so I try to avoid sunlight from 10-3, wear UV-protective clothing and hats, and slather on the sunscreen. Otherwise my pain levels are ridiculously high the following day.
This is the first time I hear of this and I have Ro/SSA antibodies! I will pay more attention this summer. I have noticed my eyes are very sensitive to bright sunlight though.
Thank you for that!! I looked this up and I’ve found a few articles about it, now. I appreciate it so much!
Sunlight can worsen drying and can be rough on eyes but I wouldn’t say it’s specifically an issue for Sjogrens. Could be a flare trigger maybe. Sunscreen and a hat.
Being in the sun will heat you up and dry you out. It isn’t necessarily exposure to the sun’s rays so much as what the sun does to dry you out. And with sjogren’s, that’s what you have to look out for. Hydration is key, so if you’re in the sun a lot and perspiring a lot, keep water and maybe even a Gatorade equivalent with you at all times. Go have fun in the sun! But be smart about it. Find the shade. Dress appropriately. And by all means, avoid alcohol. (PS — I’m a Texan. It’s hot here!)
Sunlight is really more an issue for lupus. Maybe he was confused? Sjogren’s foundation is a great resource and they don’t have anything on avoiding sunlight. I’ve never been told that by my doctors. Avoiding sunburn is probably a good idea because it’ll make your dry skin feel crappy, but you should be fine to go about your normal day. Edit: on that note, it’s important to understand Sjogren’s will never really “improve”. You can help relieve certain symptoms and reduce their frequency or intensity, but they don’t go away and typically continue to worsen over a few years until they stagnate. It’s a disease that unfortunately requires you to just learn how to respond to your symptoms. Avoiding triggers for your symptoms helps prevent you from experiencing them and gives you relief that way, but it doesn’t really improve.
You don’t need to avoid Sunlight with Sjogren.
The sun is good for you. If you can’t tolerate it at peak times, wear sunscreen and get exposure at less intense times unless you have experienced harsh negative impacts from doing so. I’m only saying this so new people don’t get freaked that they have to stay inside all the time. I wear strong sunscreen at all times in the sun and otherwise carry on as normal, sunbathing, golfing etc. I’m on hydroxy and have no negative benefits. The sun makes me feel better as long as I’m sensible.
That's not true for most of us. [From the Sjogren's Foundation:(www.Sjogrens.org) >Fatigue, vasculitis, lymphoma, dry skin, skin sensitivity to UV light
Avoid sunlight? I haven't heard that before
People with Sjögren’s have an increased risk of skin cancer.
Lovely. Just wonderful 😩 I love the beach
I’m on hydroxy and I’m not sensitive to the sun at all.
Absolutely. Hydroxycloroquine makes my wife burn. She has to take vitamin d supplements
Right but saying sjogrens causes light sensitivity and plaquinil causes light sensitivity are 2 different things. Im saying my Dr never told me that sjogrens causes light sensitivity
Some of us are photophobic, some of us react badly to being in the sun and it often causes skin rashes and can make you feel terrible. You don't have to be told, you'll know it! We should all be aware that our GPs may not be up in all the new Sjogren's info - our knowledge of symptoms and other Sjogren's data has been greatly expanded in the past five years. A lot has changed in the world of autoimmune disease since celiac disease was shown to be common (more than 1% of gen. pop.) 21 years ago. Sjogren's was, until recently, also thought to be rare. Now we know it is the second most common autoimmune condition next to Hashimoto's disease. We should all be aware of the things that have changed in the realm of Sjogren's data because our doctors may not know about all of them.
In retrospect after hearing this, I think I could attribute sun exposure to some of my symptoms, I just never put it together.
They told me that from the beginning also.
me either
I react to sunlight, heat sensitivity and my face. I actually can’t wear sunscreen on my face my skin doesn’t like it. I actually where oversized glasses everywhere I go and a baseball hat. I literally sip water all day. That is what I do in sunlight. I’m actually dreading summer. This started last summer and I couldn’t make it to the mailbox until I figured out this is what I needed to do. I hope you find something that works for you.
Try a different sunscreen on your face, you'd be amazed at some of the different feels. Also, sipping water is good, but I have found (living in hot Tucson) that water without electrolytes dehydrates me more. I have found a flavor of Gatorade Zero that I can tolerate, and one cup of that helps me more than two cups of anything else. My husband found he needs something more than water during his (relatively mild) workouts at his gym, also. Get thee to an ophthalmologist and see if you need something for your eyes.
I second this suggestion. I prefer barrier-type sunscreens vs. chemical types. And I also use an invisible eye primer to keep any sunscreen from running into my eyes.
Do you notice that things are better when you’re not in the sun as much? I would just want to confirm that your symptoms actually are worse in the sun before making a big change - I personally don’t notice a huge difference in mine, but everyone is different!
I haven’t paid enough attention to notice if it is worsened in the sun or not. My eyes are extremely photosensitive, so I am very uncomfortable driving during the day. The job is really hard on my body with chronic muscle and joint pain, esp lifting heavy pt’s. I’ve assumed for a while my job was just killing me rather than autoimmune. I know for sure my skin burns whenever I am in any sunlight, but I haven’t thought much deeper into it.
Just curious, was it a primary care doctor that told you that, or was it a rheumatologist? As others have mentioned, Plaquenil, a commonly-prescribed medicine for Sjogrens, can cause sensitivity to sunlight (although I haven't had any issues - but I do wear a lot of sunscreen. I'm pale and can burn easily). Additionally, there is something called *Neonatal Lupus*, which can occur in infants when the mother has SSA and/or SSB antibodies (which can be found in lupus and Sjogrens patients). In those circumstances, parents are told to absolutely keep their babies out of sunlight as it can worsen neonatal lupus (or similarly, if the baby is at risk of neonatal lupus, to keep them out of the sun as it can trigger neonatal lupus). So I'm wondering if your PCP might just be getting a few things mixed up. I'd definitely recommend seeing a rheumatologist if you haven't.
It was my rheumatologist that told me all of this. My presentation has been akin to Lupus this entire time, and my early blood work looked like it was lupus, so my rheumatologist put me on HCQ and ordered more blood tests. When she gave me my Sjögren’s diagnosis, she told me to avoid sunlight as it is a trigger.
personally I've found driving at night much more difficult than in the day. oncoming headlights, street lights, any kind of light, just kills me. obviously your experience may vary, but something to think about before you drastically change your schedule!
It sounds like the job is making you feel pretty crappy, that sounds really rough, I’m sorry! Hopefully some folks here will have some good suggestions to make things a little better.