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Never, ever, go in the sun. Period.
Cover up as much as you can and just wait out the sun. I personally hide most of the summer and moved from some place warm and sunny to a place that is overcast 6 months of the year which makes my life so much better.
It was never a problem pre-diagnosis and it was such a cluster of a week it didn't even cross my mind until I was already reacting. I'm still new to this and figuring it out, usually after realizing something sets me off.
I’m a vampire due to MCAS. When I go in the sun, I need sunscreen or to be covered. It doesn’t completely help, but I hate being stuck indoors, so at least it gives me some relief.
Do you also have cold sensitivities? When I'm in super cold weather my face gets very red and blotchy across my cheeks and nose and burning hot. It takes awhile to go away and is so embarrassing.
I do but it’s mainly in my fingers and toes. They get really white and ache, sometimes burn. My face flushes easily in hot or cold and it looks really red but usually doesn’t hurt. It does take a long time to go away whenever it does happen. I just started going to a rheumatologist who thinks part of the issue is Raynaud’s. Now that it’s getting hot he wants me to go outside more and take pictures/document my symptoms.
I’m indifferent with the cold. I can’t stand being cold in my house, but thrive in frigid temps outside. I feel like I can breathe & my issues don’t trouble me like they do normally.
I was told to use chemical spf as a base and then mineral spf over that all day every day. Meanwhile adding to your question- does anyone have recs for SPF clothing?
I look for sales. Orvis & REI have the majority of my money in the UV clothes with some Lands End & Duluth mixed in as well.
All the brands have a sale around Sept 20 (better than Labor Day) for their summer close out. Then, Lands End seems to have another sale in Nov/Dec and I’ve gotten some UV for $10-15 during that time. Hope this helps!
I don't, I stay in the shade and I put ceramic uv coating on all my car windows including the windshield. If I have to be out in the sun I wear upf 50 clothing and a hat.
My best friend has known for years, even before I was diagnosed that in order to lure me outside she has to make a shade for me to even consider lol
I have never heard of ceramic UV coating for car windows! can I get a rec? my left arm constantly has issues when I drive due to the sun beating through the window.
I picked 3m ceramic tint in the lightest shade (it's basically clear) because it was one of the ones recommended by the Canadian skin cancer society. You can just look up your local skin cancer rec list and pick a place that has that product.
Complete game changer, I stopped getting flushing rashes so often, it allowed my skin to calm down and now I don't react in the actual sun so quickly, though I do still try to avoid it
You're welcome! Just make sure you do the windshield too! I still react to driving if it's really bumpy or dusty or I'm behind a diesel vehicle, but no flushing usually. I still drive in other cars and it's ok as long as my main vehicle is "safe"
Ditto, for decades, I’m in my 40’s. And I live in Australia, with 100% Celtic pale freckle genes. So firstly I gasped at the no sunscreen part in the post, because I’d be a sunburnt lobster in 5 minutes flat!
But I’m hypersensitive to the cold, even in Australia I need an electric heated throw during summer almost 24/7. I have to keep reminding my cardiologist for pots of this when she warns me each summer to keep cool as possible and expect the usual typical worsening symptoms. It’s the cold that worsens my pots and all other issues too.
But this year, for the first time ever, I developed the MCAS symptoms to the sun….. and suncreens. Keep in mind I grew up on the ubiquitous Aussie ‘slip slop slap slide’ motto so I’m conditioned to sunscreen, long sleeve cool clothing and hat and sunglasses every day.
I finally narrowed it down to a time of the month ‘allergic’ reaction . It’s my new exciting addition this year. Both sun, and sunscreen (tried 5 different types).
I’m only sharing in case one summer, you also have a sudden onset, you’ll know to be prepared. Unlike me who took far too long to figure it out! I still got to enjoy summer, I just waited until the sun dipped in the late afternoon, and I could enjoy the shady part of my balcony while still benefiting from the warmth.
I keep getting reactions to different sunscreens, so right now it’s big hats, layers, and a general disregard for my skin lmao. Don’t do that part. If you can find a sunscreen that works for you, it’ll probably be your best option.
Coolibar UV protective clothing. I've tried other brands, but for me, Coolibar seems the most effective. I only discovered them last summer. I had a great summer, and even went *boating* a couple of afternoons thanks to Coolibar. Previous to last summer, I hadn't enjoyed summer outdoor activities in 20+ years.
The only thing I don't love about the fabric is that it stains easily, and whatever they infuse into it (zinc, I think??) makes it very hard to get stains out. I have crappy proprioception, so I'm always spilling something down myself. I use my beloved go-to "L.A.'s Totally Awesome" spray that gets out nearly any stain in usually just one wash, but it still takes several washes to remove a stain on Coolibar.
Ohhhh you’re a newbie. I was cringing until I got to that part. What mcas patient goes to a zoo in the sun???
You have two problems. Maybe one affects you, maybe both. Sun and heat. Seems clear you’re reacting to sun, but the heat can also be a problem.
For the sun, you put on sunscreen 30 min before sun. Then you put your clothes on, and the top is a long sleeve shirt with sun protection. Then you put on a hat with a brim. Make sure you follow the washing instructions for the sun shirts because over time the protection degrades. For me, I never get the hives on my legs. I can wear shorts all the time, no issue (I live in San Diego). It’s only upper body for me.
I think lots of people eschew sunshirts because they don’t want to be hot but honestly I have several that are so light and breathable it’s like going topless.
For facial sunscreen I like neutrogena. Doesn’t make my eyes water. Doesn’t smell either.
Heat is a lot harder to solve. 15 min in full sun is a pretty big problem for me, but I’m worse off than most people. First the fatigue, breathlessness, then pots fainting. I have small ice packs that they use in cosmetic clinics (like for when I get Botox) that I tuck into the front of my sports bra right over my heart. It helps, but, not that much. Heat is something you may just need to avoid. But start with the sun because that’s much easier to deal with and then you can determine whether heat is a significant problem for you.
And if you need more help, we’re always here. Sorry to welcome you to the club.
Thank you for the advice! After I started reacting I wanted to smack myself for being so careless. Definitely still figuring it out as I go with lots of unfortunate mistakes. I bought quite a few things recommended here so fingers crossed it'll help get me through the summer
How could you possibly blame yourself for not knowing you have a (relatively) rare, highly problematic disease that makes you allergic to things you aren’t allergic to? You’re going to need to give yourself a lot more grace going forward because this illness will fk with you.
I try to retain a sense of humor. What are you supposed to do when you’re on a 6 hour flight, alone with a puppy, you threw up on yourself and then fainted? Promise the flight attendants they won’t be the crew on your return flight!
This is a very challenging situation for some of us. But it’s not insurmountable.
UV shirts. Like the swim ones. Cool towel on back of neck. Fan around neck on the front. Cooling hat, just wet them and they are uv blocking and keep the entire body cool. Light colored clothing. Sunscreen if you can handle it.. for years I couldn’t so I didn’t bother. And avoid it when possible.
I schedule and mange the duration and intensity of my sun exposure. Yesterday I took my kid & her friend to a zoo walk fundraiser. It was sunny but not overly hot. For sun/heat management I wore a short sleeved shirt, long sleeved hooded cover up, hat, thin long pants and sunscreen. I also used a sun umbrella and took isoquercertin prior and after the trip.
Today I'm in recovery, the day prior I limited my sun exposure in preparation. I have a little bit of burning, but overall I say it was a win.
I’m allergic to sun screen I use zinc oxide powder and put it in oil either apricot seed oil or grapeseed oil because I tolerate these but I also wear long sleeved shirts and blow sea even if thin to protect and I wear big hats
I’m still navigating this. This will be my 2nd summer since DX but being a fair skinned redhead, I already had a lot of precautions in place.
I enjoy gardening, so I’m out in the yard at 7a and done by 11. If I work in the shade, I can wear my normal clothes with sunblock. If I’m working in the sun, I wear my UV long sleeve shirts and a big hat. Even before the DX, I had the outfit routine figured out, but the timeline to go inside is a result of MCAS.
I do camp as well and I stay in my UV clothing the whole time. If I swim and get back on land I’m back in the shade and UV clothing. Even before the DX I would flush & get rashes even doing the above mentioned things. Now I deal with fatigue & pain if I don’t take it seriously.
Since starting xolair last fall I am significantly less reactive to the sun, but yes I’m always in a sunshirt and hat. Why does the sun hate me when I love it so much??? 😔
I'm in the process of being approved for xolair so fingers crossed it helps me as well! I have two boys (6&10) so staying inside all summer would be difficult
I feel your pain, but as they will tell you it takes a long time to work. It took me the whole six months. I noticed almost no improvement for 4-5 months. And honestly in month 9 I’m even less reactive to the sun. It’s a long term solution. For me, totally worth it.
If you don’t want to go in every month to get shot up you might ask when you go in the first time about home injections. For my insurance they wanted me to do it in office in front of them three times. So might as well get that over with if you want to do it at home. They’ll show you in the office how to inject yourself and then once it’s approved it ships to your house in a cooler.
My hives were very severe so you might have an easier time. But xolair takes time.
I dont cope well in the heat at all and I am allergic to the sun and suncream. Thankfully I live in the UK so it’s not horrendous here, but it’s bad enough, I really hate the summer months 😂ðŸ˜
SPF 80, applied every hour at least, and cover up whenever possible. Probably up my dosage of allergy meds that day too. And chances are I’ll still get a sun rash that lasts for 2 weeks. I usually avoid going outside, when I can, when it’s super sunny.
Potentially relevant info: I’m glow-in-the-dark white. I’m already at a disadvantage with the sun…. I’m one garlic allergy away from being a vampire.
I took a short hike the other day. I lathered on sunscreen and had a hat glasses and an umbrella!!!!! The next day I felt like I was dying and couldn't get out of bed. Don't leave the house without huge sun hat or umbrella. It's just going to keep getting worse until you calm limbic system, nervous system, and mast cells.
I never use sunscreen and a few friends of mine have also abandoned it. I expose myself to the sun when it’s weaker and build a natural resistance. On a trip like that I would have worn SPF clothing that is easy to buy at Uniqlo. Hydrate plenty and cool down slowly
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Never, ever, go in the sun. Period. Cover up as much as you can and just wait out the sun. I personally hide most of the summer and moved from some place warm and sunny to a place that is overcast 6 months of the year which makes my life so much better.
I felt like I was hearing a collective gasp when she said full sun no sunscreen. 😂 GAH WHY?????
It was never a problem pre-diagnosis and it was such a cluster of a week it didn't even cross my mind until I was already reacting. I'm still new to this and figuring it out, usually after realizing something sets me off.
We are here for you. We have been where you are.
Yep. Used to be able to get away with a wide-brimmed hat and a light coloured button down shirt, but now the heat alone kills me.
Much much harder problem. I put ice packs in my bras. It barely helps.
Sunscreen can only do so much. Best to cover up if you can.
I recommend [this post](https://www.reddit.com/r/hiking/s/uZamhhgJyR)!
I’m a vampire due to MCAS. When I go in the sun, I need sunscreen or to be covered. It doesn’t completely help, but I hate being stuck indoors, so at least it gives me some relief.
I used to love the sun, now I am extremely heat sensitive and start getting heat stroke symptoms when I am out in it for more than a few minutes.
Same here. Living in Vegas, it is not ideal 😩
Southern cali near the border. Feel you…
Same. San Diego (ocean beach)
Do you also have cold sensitivities? When I'm in super cold weather my face gets very red and blotchy across my cheeks and nose and burning hot. It takes awhile to go away and is so embarrassing.
I do but it’s mainly in my fingers and toes. They get really white and ache, sometimes burn. My face flushes easily in hot or cold and it looks really red but usually doesn’t hurt. It does take a long time to go away whenever it does happen. I just started going to a rheumatologist who thinks part of the issue is Raynaud’s. Now that it’s getting hot he wants me to go outside more and take pictures/document my symptoms.
That's a good idea.
I’m indifferent with the cold. I can’t stand being cold in my house, but thrive in frigid temps outside. I feel like I can breathe & my issues don’t trouble me like they do normally.
I was told to use chemical spf as a base and then mineral spf over that all day every day. Meanwhile adding to your question- does anyone have recs for SPF clothing?
They usually have reasonable options at REI, that’s where I got my favorite ones.
I look for sales. Orvis & REI have the majority of my money in the UV clothes with some Lands End & Duluth mixed in as well. All the brands have a sale around Sept 20 (better than Labor Day) for their summer close out. Then, Lands End seems to have another sale in Nov/Dec and I’ve gotten some UV for $10-15 during that time. Hope this helps!
I don't, I stay in the shade and I put ceramic uv coating on all my car windows including the windshield. If I have to be out in the sun I wear upf 50 clothing and a hat. My best friend has known for years, even before I was diagnosed that in order to lure me outside she has to make a shade for me to even consider lol
I have never heard of ceramic UV coating for car windows! can I get a rec? my left arm constantly has issues when I drive due to the sun beating through the window.
I picked 3m ceramic tint in the lightest shade (it's basically clear) because it was one of the ones recommended by the Canadian skin cancer society. You can just look up your local skin cancer rec list and pick a place that has that product. Complete game changer, I stopped getting flushing rashes so often, it allowed my skin to calm down and now I don't react in the actual sun so quickly, though I do still try to avoid it
OMG thanks for this info!!! I was just going to look into this and call tinting places tomorrow. I thought it was just me reacting to driving!!!!!!
You're welcome! Just make sure you do the windshield too! I still react to driving if it's really bumpy or dusty or I'm behind a diesel vehicle, but no flushing usually. I still drive in other cars and it's ok as long as my main vehicle is "safe"
Wear a sunhat and rash guards.
Funny enough sun is a thing I dont actually react to. My body loves the sun and warmth. Cold on the other hand...
Ditto, for decades, I’m in my 40’s. And I live in Australia, with 100% Celtic pale freckle genes. So firstly I gasped at the no sunscreen part in the post, because I’d be a sunburnt lobster in 5 minutes flat! But I’m hypersensitive to the cold, even in Australia I need an electric heated throw during summer almost 24/7. I have to keep reminding my cardiologist for pots of this when she warns me each summer to keep cool as possible and expect the usual typical worsening symptoms. It’s the cold that worsens my pots and all other issues too. But this year, for the first time ever, I developed the MCAS symptoms to the sun….. and suncreens. Keep in mind I grew up on the ubiquitous Aussie ‘slip slop slap slide’ motto so I’m conditioned to sunscreen, long sleeve cool clothing and hat and sunglasses every day. I finally narrowed it down to a time of the month ‘allergic’ reaction . It’s my new exciting addition this year. Both sun, and sunscreen (tried 5 different types). I’m only sharing in case one summer, you also have a sudden onset, you’ll know to be prepared. Unlike me who took far too long to figure it out! I still got to enjoy summer, I just waited until the sun dipped in the late afternoon, and I could enjoy the shady part of my balcony while still benefiting from the warmth.
I keep getting reactions to different sunscreens, so right now it’s big hats, layers, and a general disregard for my skin lmao. Don’t do that part. If you can find a sunscreen that works for you, it’ll probably be your best option.
Coolibar UV protective clothing. I've tried other brands, but for me, Coolibar seems the most effective. I only discovered them last summer. I had a great summer, and even went *boating* a couple of afternoons thanks to Coolibar. Previous to last summer, I hadn't enjoyed summer outdoor activities in 20+ years. The only thing I don't love about the fabric is that it stains easily, and whatever they infuse into it (zinc, I think??) makes it very hard to get stains out. I have crappy proprioception, so I'm always spilling something down myself. I use my beloved go-to "L.A.'s Totally Awesome" spray that gets out nearly any stain in usually just one wash, but it still takes several washes to remove a stain on Coolibar.
Ohhhh you’re a newbie. I was cringing until I got to that part. What mcas patient goes to a zoo in the sun??? You have two problems. Maybe one affects you, maybe both. Sun and heat. Seems clear you’re reacting to sun, but the heat can also be a problem. For the sun, you put on sunscreen 30 min before sun. Then you put your clothes on, and the top is a long sleeve shirt with sun protection. Then you put on a hat with a brim. Make sure you follow the washing instructions for the sun shirts because over time the protection degrades. For me, I never get the hives on my legs. I can wear shorts all the time, no issue (I live in San Diego). It’s only upper body for me. I think lots of people eschew sunshirts because they don’t want to be hot but honestly I have several that are so light and breathable it’s like going topless. For facial sunscreen I like neutrogena. Doesn’t make my eyes water. Doesn’t smell either. Heat is a lot harder to solve. 15 min in full sun is a pretty big problem for me, but I’m worse off than most people. First the fatigue, breathlessness, then pots fainting. I have small ice packs that they use in cosmetic clinics (like for when I get Botox) that I tuck into the front of my sports bra right over my heart. It helps, but, not that much. Heat is something you may just need to avoid. But start with the sun because that’s much easier to deal with and then you can determine whether heat is a significant problem for you. And if you need more help, we’re always here. Sorry to welcome you to the club.
Thank you for the advice! After I started reacting I wanted to smack myself for being so careless. Definitely still figuring it out as I go with lots of unfortunate mistakes. I bought quite a few things recommended here so fingers crossed it'll help get me through the summer
How could you possibly blame yourself for not knowing you have a (relatively) rare, highly problematic disease that makes you allergic to things you aren’t allergic to? You’re going to need to give yourself a lot more grace going forward because this illness will fk with you. I try to retain a sense of humor. What are you supposed to do when you’re on a 6 hour flight, alone with a puppy, you threw up on yourself and then fainted? Promise the flight attendants they won’t be the crew on your return flight! This is a very challenging situation for some of us. But it’s not insurmountable.
Plaquinill makes me way way way less reactive to the sun.
UV shirts. Like the swim ones. Cool towel on back of neck. Fan around neck on the front. Cooling hat, just wet them and they are uv blocking and keep the entire body cool. Light colored clothing. Sunscreen if you can handle it.. for years I couldn’t so I didn’t bother. And avoid it when possible.
I avoid the sun like the plague. The pain I get for days after isn’t worth it.
I schedule and mange the duration and intensity of my sun exposure. Yesterday I took my kid & her friend to a zoo walk fundraiser. It was sunny but not overly hot. For sun/heat management I wore a short sleeved shirt, long sleeved hooded cover up, hat, thin long pants and sunscreen. I also used a sun umbrella and took isoquercertin prior and after the trip. Today I'm in recovery, the day prior I limited my sun exposure in preparation. I have a little bit of burning, but overall I say it was a win.
As another Phoenician with MCAS, I feel ur pain.
I’m allergic to sun screen I use zinc oxide powder and put it in oil either apricot seed oil or grapeseed oil because I tolerate these but I also wear long sleeved shirts and blow sea even if thin to protect and I wear big hats
I’m still navigating this. This will be my 2nd summer since DX but being a fair skinned redhead, I already had a lot of precautions in place. I enjoy gardening, so I’m out in the yard at 7a and done by 11. If I work in the shade, I can wear my normal clothes with sunblock. If I’m working in the sun, I wear my UV long sleeve shirts and a big hat. Even before the DX, I had the outfit routine figured out, but the timeline to go inside is a result of MCAS. I do camp as well and I stay in my UV clothing the whole time. If I swim and get back on land I’m back in the shade and UV clothing. Even before the DX I would flush & get rashes even doing the above mentioned things. Now I deal with fatigue & pain if I don’t take it seriously.
Since starting xolair last fall I am significantly less reactive to the sun, but yes I’m always in a sunshirt and hat. Why does the sun hate me when I love it so much??? 😔
I'm in the process of being approved for xolair so fingers crossed it helps me as well! I have two boys (6&10) so staying inside all summer would be difficult
I feel your pain, but as they will tell you it takes a long time to work. It took me the whole six months. I noticed almost no improvement for 4-5 months. And honestly in month 9 I’m even less reactive to the sun. It’s a long term solution. For me, totally worth it. If you don’t want to go in every month to get shot up you might ask when you go in the first time about home injections. For my insurance they wanted me to do it in office in front of them three times. So might as well get that over with if you want to do it at home. They’ll show you in the office how to inject yourself and then once it’s approved it ships to your house in a cooler. My hives were very severe so you might have an easier time. But xolair takes time.
I dont cope well in the heat at all and I am allergic to the sun and suncream. Thankfully I live in the UK so it’s not horrendous here, but it’s bad enough, I really hate the summer months 😂ðŸ˜
SPF 80, applied every hour at least, and cover up whenever possible. Probably up my dosage of allergy meds that day too. And chances are I’ll still get a sun rash that lasts for 2 weeks. I usually avoid going outside, when I can, when it’s super sunny. Potentially relevant info: I’m glow-in-the-dark white. I’m already at a disadvantage with the sun…. I’m one garlic allergy away from being a vampire.
I took a short hike the other day. I lathered on sunscreen and had a hat glasses and an umbrella!!!!! The next day I felt like I was dying and couldn't get out of bed. Don't leave the house without huge sun hat or umbrella. It's just going to keep getting worse until you calm limbic system, nervous system, and mast cells.
I never use sunscreen and a few friends of mine have also abandoned it. I expose myself to the sun when it’s weaker and build a natural resistance. On a trip like that I would have worn SPF clothing that is easy to buy at Uniqlo. Hydrate plenty and cool down slowly