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Sun sensitivity/rash?

My daughter was diagnosed 5 months ago in the Fall, we live in NC so we get our share of sun but she’s certainly not outside for long periods of time during the school year. We went to Florida on vacation this past November and her face developed a rash and she had dry, scaly eyelids. Fast forward, we are back in Florida for spring break and day 2 her eyelids were swollen and signs of the rash starting on cheeks which is full out today. We went to a clinic yesterday and she was given a steroid eye drop. His best guess was that she is sensitive to PABA or oxybenzone now and it’s causing contact dermatitis. I checked our sunscreens and they are gluten-free (Celiac), but bought new in case she’s developed a sensitivity to those ingredients. I asked her GI back in the Fall if it was photosensitivity from Lialda but she didn’t think so. Is there anything else GI related that could be causing this, this only started happening since diagnosis.
 

Maya142

Moderator
Staff member
Hmmm...I haven't heard anything about sun sensitivity with the 5-ASA drugs. My daughter was only on one (Pentasa) in conjunction with other meds, so no idea if it caused anything.

My daughter is VERY sensitive to sunscreen. She gets a rash on her face if we use certain kinds. Our dermatologist saw her rash, said it was irritation, prescribed a very mild steroid cream and told us to try Cerave sunscreen. It has worked well for her.

In addition, she tries to swim in the evening instead of when the sun is very strong. And she wears a rashguard so she's more covered. She learned the hard way if she didn't wear one, she would end up with a painful sunburn.

The meds that make you more sensitive to the sun are MTX and Imuran. People on Imuran/6MP are more likely to get non-melanoma skin cancers.
 
Hmmm...I haven't heard anything about sun sensitivity with the 5-ASA drugs. My daughter was only on one (Pentasa) in conjunction with other meds, so no idea if it caused anything.

My daughter is VERY sensitive to sunscreen. She gets a rash on her face if we use certain kinds. Our dermatologist saw her rash, said it was irritation, prescribed a very mild steroid cream and told us to try Cerave sunscreen. It has worked well for her.

In addition, she tries to swim in the evening instead of when the sun is very strong. And she wears a rashguard so she's more covered. She learned the hard way if she didn't wear one, she would end up with a painful sunburn.

The meds that make you more sensitive to the sun are MTX and Imuran. People on Imuran/6MP are more likely to get non-melanoma skin cancers.
Thank you! I’m so puzzled, she woke up with swollen eyes and cheek today despite the steroid eye drops. We purposely avoided sun yesterday as much as possible. I cannot figure out what she is reacting to here. Feeling like sun, sunscreen or maybe the deterrents they use here? It’s so strange. I considered feather pillows since the eyes seem to swell overnight but hers are not feather.
 

Tesscorm

Moderator
Staff member
Just a thought... and maybe unlikely as you are talking about face area but are you using an aerosol sunscreen?

I do not have crohns (my son does), have no allergies, on no meds and usually no sensitivities to products. But, years ago, when aerosol sunscreens first came out, I tried one while in Florida... at first couldn't figure out why I developed a rash on my arms, chest and shoulder blade areas... figures it was a heat rash. But, I noticed the rash on my shoulder blades seemed to be the shape of a 'spray', ie triangular. I determined it was from the aerosol spray?? But, the spray didn't affect the rest of my family...

Last year, I decided to try it again (was envious of how convenient the spray was for everyone else! lol), so tried it a few days down south... yep, again the same rash - chest, arms, legs... I have no proof but seems pretty coincidental whenever I use an aerosol sunscreen, over a few days, I develop a rash.

The rash is similar to a heat rash... red, little bumps, itchy... I don't know about her eyes but, if you have used an aerosol, maybe some got into her eye area??

I hope you figure it out...
 

Maya142

Moderator
Staff member
Could it be environmental allergies? She may be allergic to something in Florida...I'm just guessing here.

I'll tag my little penguin since she has a lot of allergy experience.
 
Could it be environmental allergies? She may be allergic to something in Florida...I'm just guessing here.

I'll tag my little penguin since she has a lot of allergy experience.
Okay, we just left the clinic again, her face was swelling up so much it was scaring me. He now prescribed a 2 day liquid dose of steroid. Any issue with taking this for IBD? I realize it’s prescribed for that but still wanted to get peace of mind. I wish it was easier and quicker to get a hold of her medical staff to ask questions.
 

my little penguin

Moderator
Staff member
Glad you got into see a doc
How much steriods ?
Assume 40-60 mg
Ds had an allergic reaction to many things

A month ago he had anaphylaxis to a drug
60 mg of pred for two days
No issues for ibd

They use it for systemic issues
If things get worse or she adds other signs of anaphylaxis call 911 immediately

Swollen eyes could simply be pollen/plant allergies
The place could have hidden mold due to location near the water which can cause a reaction
Could be sunscreen?

For ds we use pure zinc oxide (Zinka) on his face
Swimhood over his head /neck ears
Long sleeve rash guard
Long board shorts
Swim socks
Goggles or a wide brim hat
Neutropenia suncreen on exposed hand /knees /shins

Severe allergies
So we bring sheets /blankets/pillows
Combat food allergies by using paper plates /forks
Our own pans /toaster

It could be environmental
It could be laundry detergent on the sheets etc... from the rental place
Scents used in the condo /hotel ???
Previous pets of guests /mold /bugs (lady bugs even
Spray they use to clean the place

Signs of anaphylaxis


Symptoms
Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:

Trouble breathing
Hives or swelling
Tightness of the throat
Hoarse voice
Nausea
Vomiting
Abdominal pain
Diarrhea
Dizziness
Fainting
Low blood pressure
Rapid heart beat
Feeling of doom
Cardiac arrest
People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.

Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.

From
https://acaai.org/allergies/anaphylaxis

I will say we go to the beach since ocean breeze keep the pollens down to nothing
 
Glad you got into see a doc
How much steriods ?
Assume 40-60 mg
Ds had an allergic reaction to many things

A month ago he had anaphylaxis to a drug
60 mg of pred for two days
No issues for ibd

They use it for systemic issues
If things get worse or she adds other signs of anaphylaxis call 911 immediately

Swollen eyes could simply be pollen/plant allergies
The place could have hidden mold due to location near the water which can cause a reaction
Could be sunscreen?

For ds we use pure zinc oxide (Zinka) on his face
Swimhood over his head /neck ears
Long sleeve rash guard
Long board shorts
Swim socks
Goggles or a wide brim hat
Neutropenia suncreen on exposed hand /knees /shins

Severe allergies
So we bring sheets /blankets/pillows
Combat food allergies by using paper plates /forks
Our own pans /toaster

It could be environmental
It could be laundry detergent on the sheets etc... from the rental place
Scents used in the condo /hotel ???
Previous pets of guests /mold /bugs (lady bugs even
Spray they use to clean the place

Signs of anaphylaxis





From
https://acaai.org/allergies/anaphylaxis

I will say we go to the beach since ocean breeze keep the pollens down to nothing
Thank you so much! The Doctor prescribed 15mg 2x a day for 2 days. The swelling has gone down since leaving of course. Both sides of the face were swelling but definitely more on one side which is opposite of what we saw a couple days ago where the other side was more prominent. Nurse said her nasal passages looked inflamed, no breathing issues or other dangerous concerns but I’m watching. Would you guys still take the steroid if the swelling has gone down already? The GI Doctor called back and said it’s fine, I don’t know why it’s making me so nervous. I get paranoid about changing things up when her IBD is in a good place.
 

my little penguin

Moderator
Staff member
2x15 mg of 2 days is really low for allergic reaction

Do definitely give it
Her system needs to calm down significantly
Normally you have an allergy bucket so when you come in contact with minor allergens or other foreign things
No reaction

When the body has had significant reaction as in your Dd case
The allergy bucket is full to the rim
So any little drop will cause it to overflow and have more reactions
The steriods help her system calm down
It can only help ibd wise not hurt

Ds was only six and was on 60 mg for 5 days due to anaphylaxis
30 mg for two days is very minor

Her body needs it right now to calm down
 
2x15 mg of 2 days is really low for allergic reaction

Do definitely give it
Her system needs to calm down significantly
Normally you have an allergy bucket so when you come in contact with minor allergens or other foreign things
No reaction

When the body has had significant reaction as in your Dd case
The allergy bucket is full to the rim
So any little drop will cause it to overflow and have more reactions
The steriods help her system calm down
It can only help ibd wise not hurt

Ds was only six and was on 60 mg for 5 days due to anaphylaxis
30 mg for two days is very minor

Her body needs it right now to calm down
Okay, thank you so much for the reassurance.
 
Thanks for all your help everyone, the steroid helped and got the swelling down within a day or so. I have been googling a lot, I can't help but think this is somehow related to the Lialda. There are cases of sun sensitivity out there, I am not sure why her GI was so quick to dismiss it. I will change sunscreens either way. We are heading into our hot NC weather soon so that will be interesting to see if anything else happens.
 

my little penguin

Moderator
Staff member
See a dermatologist
Even if Liadia is causing sun sensitivity
Sun sensitivity make cause you to be more likely to burn
It will not cause facial
Swelling etc... that your described
What your describing is NOT sun sensitivity
Other immunosuppressants do cause it
But under treated Crohns is worse
 
See a dermatologist
Even if Liadia is causing sun sensitivity
Sun sensitivity make cause you to be more likely to burn
It will not cause facial
Swelling etc... that your described
What your describing is NOT sun sensitivity
Other immunosuppressants do cause it
But under treated Crohns is worse
Yes, definitely sticking with the Lialda, I'm delighted it has worked for her. I tried to get good pics but it didn't capture it all that well. If it crops up again our first stop will be a dermatologist. Thanks for help!
 

my little penguin

Moderator
Staff member
See a dermo now so you can show pics and they can get her as patient

Thus prevents monthswait later
And they might be able to tell you how to prevent it again
 
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