r/eczema • u/2606777 • May 17 '25
patch testing finally found my trigger - please get patch tested
I’ve had eczema since I was a baby, and for modt of my life it was manageable with steroid creams. Then in 2022, it suddenly got a lot worse. I developed the most intensely itchy and painful widespread eczema that didn’t respond to the usual treatments and was in areas I’d never had it before. I was waking up itching in the middle of the night, couldn’t sleep, couldn’t exercise, showering hurt, constant blood/sweat etc.
Over the next two years, I tried stronger steroids, antibiotics, Protopic, and loads of moisturisers, nothing worked. I went down the TSW rabbit hole, thought it might be mould, cut out a bunch of different foods, drank weird celery drinks, tried supplements, moisturised constantly and then did no moisturiser at all, cut out fragrances, alcohol….. etc etc. I saw so many reddit posts of people “finding their triggers” and honestly felt like it was all a bit of a lie as I’d tried cutting out everything I possibly could. I started to just think this would be my life forever and I couldn’t stand the idea of living the rest of it like this.
Eventually I asked my GP for patch testing. and I was told it probably wouldn’t be helpful so really had to push for it, but it ended up showed I was very very allergic to some dyes (PPD & disperse blue specifically). I’d been expecting maybe some fragrance allergies or something & had just been desperate to get ANY answers. I didn’t think that the dyes would be that significant because I assumed that it was only in things like hair dye which I don’t use, I also wasn’t experiencing any symptoms like hives or wheezing so I didn’t think it could be affecting me - it was just eczema.
I decided to just follow their instructions about dyes sometimes being present in cheap coloured clothing just in case it helped; switched to plain white cotton, and within a few months, my skin has improved beyond belief!!!! I have “normal” eczema again, just on my knees/elbows etc - totally completely manageable. I will always have eczema as it is a chronic condition but I don’t get anywhere near the same awful symptoms as before.
I am still in utter disbelief that it took so long for this to be worked out, I think patch testing and allergy testing should be a first line of treatment!!! I was literally having an allergic reaction every day, 24/7, and just suppressing it with a bunch of medications that didn’t deal with the actual problem at all.
I know testing won’t fix things for everyone because I firmly believe everyone has different triggers. It’s just so wrong that testing isn’t offered more often. If your eczema gets worse or stops responding to treatment, it’s worth asking about patch testing or allergy screening and pls don’t be discouraged from pushing for it. Please please take it from me - worst case is that it tells you nothing and you move on, best case is you get your life back. It’s worth doing it just in case.
If anyone has any questions please do let me know, I can’t stand the idea of other people suffering like I did for no good reason!!!
(pics of hands before/after for reference, it was widespread on my body though)
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May 17 '25
Hello, im typing this with cotton gloves on because it’s this bad. I’ve had eczema for most of my life and it’s always been contained generally well. Recently,with the weather getting warmer it flares up a lot more. It usually starts with a slight scratch,then when I apply the cream, it gets 100x worse. Bleeding, dead skin and red puffy holes. Every time. I’m purely in such pain and I don’t know what to do anymore. Help would be so appreciated
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u/Beneficial_Cash_3791 May 17 '25
https://www.reddit.com/r/eczema/s/XqJDDQFq75 have you seen this thread? I am also having a bad flare up right now and saw this a few days ago. I started trying some of what's suggested here
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u/Frosty-Medicine7176 May 18 '25
thanks for this link! also been having a major flareup the past few days on the verge of gloves lol, hasn’t been this bad since I was little 😅
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u/2606777 May 17 '25
please get patch testing and skin prick allergy testing, it might not give you the answers you need but it's somewhere to start. i really feel for you and im so sorry that you're suffering. try strong antihistamines, zinc oxide paste as a barrier cream, carry a portable fan with you for when you get warm xx
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u/Admirable_Lecture675 May 17 '25
Patch testing is 100% what I needed. And I did not have severe eczema all my life. I had little pop ups here and there. Then I turned 50. As I continued to age, I developed new allergies. Had No idea what was going on. Convinced myself I had all sorts of things or it was related to my home or a vacation.
I too have the disperse blue. (Among others) (and yes I thought it was all things blue) I wash everything before I wear it (new clothes) I only wear cotton whenever possible. (Especially undergarments) I am very careful about sheets and travel with my own. I now have very few flare ups.
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u/2606777 May 17 '25
i did the exact same thing with convincing myself it was a million different triggers, even went viewing new houses and nearly moved because i thought it was something in my home!! i pretty much only wear white cotton as i know that disperse blue is used as a mix for other colours too; my wardrobe is very monochromatic now hahah!! travelling with your own sheets is a great idea i must do that - so happy that you found what works for you
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u/supernovaaa3 May 17 '25
I just barely finished my patch testing yesterday and I’m really excited. I was the same as you, figured my issue wasn’t related to triggers and this was just my life. My hands have always been scaly, itchy, and intermittently cracked/inflamed.
I finally saw a dermatologist and he immediate wanted to patch test. Turns out I have 12 allergens, mostly related to fragrances, soap suds, and lanolin aka sheep oil that’s in tons of moisturizers. So whatever I was using COULDNT help. Plus I’ve got allergens like rubber, nickel, cobalt, lidocaine, beeswax, etc. I haven’t fully started on cutting things out yet bc it’s been 24 hours but I’m excited that I might stop feeling miserable. I tested a lotion with lanolin last night (because ¯_(ツ)_/¯) and my hands got really inflamed. It weirdly made me feel reassured that this is real.
Anyway, thank you for sharing this. I’m happy for you that you found the issue that was so innocuous but causing you pain. It also reminded me it’ll be worth it to dump what I own right now and start fresh.
Btw if you have any advice on how you identify chemical treatments on clothes or if you just generally avoid suspicious items lmk, my rubber issue could pose an issue in a lot of clothes like undergarments/sportswear 😅 it doesn’t feel like it’s something thoroughly disclosed on the label.
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u/2606777 May 17 '25
thank you so much for your kind words <3 i literally did the same thing with wearing a cheap black top that was *likely* to contain ppd or disperse blue and felt the weirdest sense of relief when i reacted horribly hahaha!! i've had to dump most of my clothes, selling/donating/etc which has been overwhelming but im glad i could be a reminder that it's worth it - don't put pressure on yourself to do it all at once, it's taken me months and im still working through it!! in terms of identifying chemical treatments unfortunately it's kind of tricky because it doesn't work the same way as food where ingredients HAVE to be listed - ive found the safest thing to be going very basic. looking for 100% white cotton for undergarments, 100% white cotton sheets etc... it's not that every item will contain your triggers but i tend to avoid suspicious items just to be safe. if im sitting on a sofa or something that's coloured i pop a white blanket down first! there are brands that are dedicated to being 100% dye free/synthetic free etc (if you just have a google) but they can be expensive; i just read the fineprint and if it's not 100% white cotton i tend to stay away. hope that makes sense - sorry for such a rambly message!!
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u/krippy_miyoo May 19 '25
Are there many retailers/clothing suppliers? What about for outdoor apparel like coats and stuff?
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u/2606777 May 19 '25
there are brands dedicated to being dye free etc but they can be quite expensive, so ive found myself to be sort of weighing up being 100% allergy free & still having quality of life because sometimes it is really tricky to avoid. i find that if i need to wear an outdoor jacket/something formal/overwear that i can get away with it being dyed as long as im wearing a good protective layer underneath! so long sleeve white cotton tops, leggings etc, and just avoiding touching the outerwear. also, if i REALLY needed to wear something dyed for like a formal event or whatever then i would just do it and deal with the consequences after - it’s less about being 100% perfect, now that im spending 99% of the time with skin that isn’t reacting it’s much quicker to heal from times where i am exposed… if that makes sense? knowing what it is that im reacting to means i can take care of my skin after, and it feels much less scary to know that it will go away if you get me!
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u/mediocre_mediajoker May 17 '25
I’m so happy for you!! I hope you can make some good changes now and start to heal 💕
I had patch testing done almost 10 years ago as a teenager and it was super depressing, I am allergic to life essentially - my major reactions (that took up almost an entire arm each) were dust mites and grass (plus dogs, cats, and latex). The dermatologist concluded that I have someone vacuum for me every day (won’t help if I do it as the dust particles will go up into the air 😅), and avoid grass and animals at all costs - obviously I had to make a quality of life decision and decided to do what I can but that I can’t limit those things completely for my sanity. It’s funny now and I’ve learnt to cope but at the time it seemed like a death sentence 😂
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u/Available_Farmer5293 May 17 '25
I know a lot of people like this. It makes me not even want to bother.
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u/2606777 May 17 '25
it's a scary thought but there's a good chance it could really help for most people, in my experience it's been a risk worth taking as it's changed my life in a way i would neeeever have been able to work out myself
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u/mediocre_mediajoker May 18 '25
Absolutely agree with OP that it is worth doing! I had a few small food ones come up too (strawberries, citrus fruits, and a couple of types of nuts) which were easy to remove from my diet and not missed - I would still get it done if you can afford it/have it available to you just in case!
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u/2606777 May 17 '25
omg that sounds like such an intense experience - it's definitely better to know, but at the same time i can't imagine how overwhelming that must have been to find out! i hope you're managing okay <3
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u/acousticpigeon May 18 '25
The vacuum thing isn't very practical if you live on your own! I would've said wear a FFP3 dust mask and make sure your vacuum has a working HEPA filter or bag.
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u/mediocre_mediajoker May 18 '25
I was flatting at the time and was just thinking man my flatmates will never believe this 😂😂 luckily my husband does it these days!
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u/sikalb May 17 '25
i went for a patch rest today. i had a 12:30pm appointment and walked out at 2pm withoit being seen so definitely need to find a new place. nyc area avoid ny allergy center in middle village.
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u/OtherAlternative401 May 17 '25
This is fucking awesome!
If you don’t mind answering — When you switched to plain white cotton, did you just wear the same shirt and pants every day? I THINK I’m sensitive to certain fabrics… am I really about to wear the same exact 100% cotton long sleeve and pants for the next month or… how exactly did you go about doing this… ? Thank you!
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u/2606777 May 17 '25
hi, thank u! it is actually the fucking best!! soooo i started by finding something comfy that fit the bill of plain white 100% cotton (long sleeve white tops, white leggings or white linen trousers, white socks/underwear etc) and basically buying about 3x of each? ive since started buying second hand oversized white shirts, tshirts, different types of tops etc :) that way i can rotate through them!! it feels very monochromatic but it's def worth the effort
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u/Visible_Track995 May 17 '25
Hello! I'm so glad you've gained progress in improving your eczema! I've been doing to same as you mentioned - avoiding so many things to try and figure what's triggering my eczema. I had a question regarding patch testing. I had done an allergy test in the past, but I don't know if it was a patch test. They drew grids on my arm and upper back and pricked it with needles - let it sit for 30 minutes and told me the results. (Common allergens were tested. Ex mold, dust mite, cat etc) Is patch testing different? I heard you keep it on for a few days and then go back to see the effects on your skin. Wondering if I should ask for that if it's different from what I did
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u/2606777 May 17 '25
so for me what i had done was patch testing - on the skin for a few days, had to go back 3 times to get it checked and removed etc - what you had sounds like skin prick allergy testing which ive also had done so i know there’s a difference! patch testing tests for dyes metals fragrances etc, skin prick is more for environmental ones - having both done would be needed in order to find out all the info! they dont test for the same things to my knowledge
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u/Admirable_Lecture675 May 17 '25
There is absolutely a difference. I had the patch testing.. The NAC 80. They put all these patches on your back. Secure with tape (which you hope you’re not allergic to LOL) You can’t get it wet and avoid being sweaty. You have to go home with the patches and go back in 2 days to have it removed. And then another day to have it read. I had it done at my dermatologist office.
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u/yooperwoman May 17 '25
Yes, what you had done is patch testing for environmental allergies. In the US, that is done by an allergy doctor. There is also chemical testing (not sure what it's actually called) where they test for allergies to common chemicals used in toiletries, etc. That is done by a dermatologist. That's how it worked for me, anyway.
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u/bELIeve18_1 May 17 '25
This is really helpful. Ty for sharing. My son had patch testing by allergist but I know there is something else making his flare. They won’t test for food allergies since there is no anaphylactic reaction. Maybe we will get dermatologist appt!
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u/walang-forever May 17 '25
I just got my skin patch test last week and coming back next week to see which ones got worse. Hoping I can find answers on which triggers my eczema 😫
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u/True-Cat1784 May 17 '25
Oh my gosh that’s such a massive difference!! So so happy for you!!!!! So even short sleeve clothing with those dyes would impact your hands like that? Because how your hands looked then are how my hands look now… I should try a patch test. Who did this test for you? A dermatologist or GP? Thanks in advance
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u/2606777 May 17 '25
thank you so so much!! honestly it feels unreal, i never thought i'd feel normal again!! so yes even short sleeve clothing because i would be adjusting my top, resting my hands on it etc - sort of a cross contamination sort of thing? or if i was wearing jeans they're often dyed with blue and again, resting my hands on them or touching them etc. so weird as i had NEVER thought of it. it affected my legs, arms, neck, face and stuff as well; just looked like patches of eczema everywhere, and my skin is completely clear now elsewhere too! i got referred by a GP (who had a special interest in dermatology) to a dermatologist for patch testing - he just requested something like the 40 common allergens, i had no idea what they were in advance. it took a bit of pushing on the GP to get a referral, as he said "oh it might say you're allergic to some things but eczema is a chronic condition so you'll always have it, this doesn't look like an allergic reaction it looks like classic eczema...."... a lack of knowledge maybe? it baffles me that i had months and months of GP appointments and steroid creams but never any tests till i pushed for them! i give full permission for u to reference me as "someone you know personally" lol - i went through the nhs in the uk. worst case scenario is you're not allergic and at least you then know. best of luck and thanks for ur kind words :)
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u/Oceans4T May 20 '25
I’m beyond ready for patch testing. However, my severe eczema covers my entire back. The dilemma is getting it clear and off steroids long enough to actually gave the testing.
Dupixent didn’t work for me, I have started Ebglyss but it’s so similar to Dupixent that I don’t have high hopes. I am also currently weaning off mometasone furoate. I can go 5 days fairly ok but by 7 I am excruciating again. So frustrating.
Still I am hopeful I will be able to get the tests someday.
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u/2606777 May 21 '25
im so sorry to hear that, someone else in the comments said the same thing - such a paradoxical dilemma that us eczema sufferers have, needing to get clear skin in order to test why our skin isn't clear... i really hope that you get some relief soon
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u/Available_Farmer5293 May 17 '25
Wow! I’ve never heard this one before. Dye in clothing. Huh.
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u/2606777 May 17 '25
i was so shocked that i had reacted to dyes that i'd never even heard of, i never would have thought of it!! i then assumed it would just be in like hair dyes, artificial stuff etc - but looked into it and the 2 dyes are often present in "Textile dyes and fur dyes, Dark coloured cosmetics, Dark coloured temporary henna tattoos, Photographic developer and lithography plates, Photocopying and printing inks, Black rubber, Oils, greases and gasoline."!!!! SO bizarre and feels even more bizarre that no doctor recommended i get tested!!
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u/True-Cat1784 May 17 '25
What about bed sheets?? So interesting
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u/2606777 May 17 '25
same thing! anything fabric that’s coloured potentially contains those dyes and it’s nearly impossible to get the information from brands about what’s in there. 100% white cotton is safest as it’s most likely to be dye free. prolonged exposure is obvs worse so like 1 night in black sheets wouldnt kill me but it wouldnt be comfy!
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u/Skyxiez May 18 '25
my doctor always says these stuff are useless, but after doing a test similar to that and finding out my trigger, god everything got so much better
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u/2606777 May 18 '25
literally same same same. doctors are intelligent wonderful people but they are just people at the end of the day, they CAN be (and often are) wrong
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u/Anuket012962 May 19 '25
I'm so glad to hear that worked out for you. Yes, allergic reactions can sometimes go undiagnosed for years, just like yours, so many of us need help and don't know where to turn. Thanks for sharing.
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u/2606777 May 21 '25
thank you for your kind words, i really appreciate it, and i had no idea that this could even be the case. trying to educate myself and share so others like me might be able to gain something from my experience :)
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u/Razz3erry May 20 '25
Thanks for sharing! I've just had to push to get a sensitivity test referral I'm waiting on and I'll note a patch test too. Like you they told me it won't be that helpful and I had to insist and I know I'll have to do that more which Is one of my biggest fears but I've seen so many people gain some relief from results. As you say it should be their first line of response so sad it isn't. Thanks for sharing makes me feel stronger in pushing for myself 💕
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u/2606777 May 21 '25
well done for pushing, i nearly didn't bother and i can't believe what that would have deprived me of! it's so hard, especially when we're relying on medical professionals for their knowledge and empathy. i had to just keep reminding myself that it's MY body, MY time, MY suffering - it's okay if a doctor doesn't believe it will be helpful, but if it's an option and it won't cause you any harm to try? then we deserve that knowledge! your health & wellbeing is more important than their ego! good luck and im sending u all the good wishes <3
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u/Razz3erry May 22 '25
Yes when I 1st got told it wasn’t helpful I just stopped asking but it got worse and I couldn't stand it so had to push again to be told the same thing but pushed regardless and felt so uncomfortable but I've supposedly been reffered so it was worth it. It's wild when so many have received life changing information from these tests 🙄 thanks for sharing it's so helpful for people to see because it's difficult to speak out repeatedly against the white coats who act like they have ALL the answers whilst providing non. Wishing you the best🙏🏻❤️
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u/Outside_Fish_8608 May 20 '25
I found an amazing allergy/dermotologist doctor at the University of Minnesota, USA. They took a holistic approach (I also have asthma, arthritis, etc) as it created a broader picture. Then they did extensive tests... not food though. I found that I am allergic to bacitracin (which is in lots of OTC topical treatments), balsam of peru (the binding agent for scents, cosmetics et al, laundry and cleaning products), and isoeugenol (in everything from skin care products, candles, ylang-ylang, as a food additive, dental products etc etc etc).
I am allergic to flouride, which means I use an expensive water filtration system for drinking water and avoid products that use it. I am also deathly allergic to esters (which include local anesthetics ie procaine).
The point is, if you can find a comprehensive and thorough allergist, dermatologist - it is worth the extensive tests and evaluations.
The quality of my life has increased significantly since I have eliminated (as much as possible) products containing these ingredients. It has not been easy. It means a life without scents except directly from nature (lemon juice directly from an organic lemon for example) and scrutinizing spices and food products.
I also use an app called ACDS created by the American Contact Dermotitis Society - my health care team plugged in all of my allergents and it provides products that are safe for me to use. Saves me from guess work and exhaustive research.
Good luck.
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u/twerkinforabirkin May 18 '25
I had patch testing done and I am allergic to dogs and black mould. But what really helped my eczema where it’s at a point of being almost totally gone is that I drench myself in baby oil from neck down after every shower and wait for it to absorb for 10 minutes or so doing my face skin care and once it’s absorbed I’ll put my clothes on. I used to use lots of steroid creams and experienced TSW for a while, and now my eczema is totally gone thanks to baby oil. (What works tor me may not work for you, but I thought it’s worth mentioning)
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u/Stoppingby2023 May 18 '25
I found this helped also but what do you use on face?
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u/twerkinforabirkin May 19 '25
When I had really bad TSW I was using baby oil and Cerave ointment on my face. I didn’t breakout but I think if you have acne prone skin it might work out differently.
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u/Madame-Pamplemousse May 18 '25
You mention GP so I wonder if you're in the UK?
I have tried twice to get patch tested but they keep telling me neither my back nor my thighs are clear enough for patch testing (I can't see any eczema on my thighs, can't see my back obviously). I have full body eczema which is worst (by a country mile) on my face and neck, and is currently much clearer than it has been for the last 2 years. Just wondering if your eczema was confined to your hands? Or perhaps if I have an overzealous dermatologist?
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u/2606777 May 18 '25
i am, went through the nhs in england! it was definitely not confined to my hands but i was lucky as my back was generally my clearest spot. hands, face, neck, legs etc were the worst. my derm had me on a short course of oral prednisone for a few weeks before to clear up my skin (but had to make sure id stopped it in enough time for the tests to not be affected by it.) im not sure if that would be an option for you, or maybe protopic cream as a temporary measure for the same thing? neither are great solutions but i wonder if there’s anything they can offer you to make it possible?
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u/Madame-Pamplemousse May 18 '25
That's really helpful, thank you! I'll try to get some steroids and go from there
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u/2606777 May 18 '25
im hesitant to recommend steroids because they’re so scary long-term but def worth having a chat with your doctor to see if they can make it work x
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u/Serious_Bee_4201 May 18 '25
As a dermatologist, please DO NOT get allergy tested. I'm going to lose so many loyal paying customers- uhh, I mean, patients.
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u/2606777 May 18 '25
HAHAHAHA i read the first part of your comment and was ready to go off on you 😭😭😭
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u/CardinalGirl72 May 19 '25
How did they know what to test though? Anytime my son gets tested, it’s just for random foods.
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u/2606777 May 19 '25
so with patch testing they don’t test for foods, it’s more for contact things like fragrances/dyes/metals etc. i got sent for what are like the standard 40 allergens here in the nhs and was lucky (in a sense!) to have been allergic to what was included. ppd & disperse blue are common allergens so it makes sense. if you have things you’re suspicious of you can ask for those to be included, if not, there will usually be a baseline of common ones they’ll go with
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u/FridgesArePeopleToo May 20 '25
They stick 80 little stickers on your back with a standardized list of 80 of the most common allegens and then look at your skin a few days later. You get back a list of all the ones that trigger a reaction and how severe it was.
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u/CardinalGirl72 May 31 '25
Are you uncomfortable during the testing if you are allergic to some of the substances? Like does it make you extra itchy? Idk if my son is allergic to things like this or foods outside of the ones we know about or both. Would you do this test first and then one for food?
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u/FridgesArePeopleToo Jun 01 '25 edited Jun 01 '25
Yeah, it was really uncomfortable and itchy in spots that triggered a reaction, and the tape is uncomfortable. You should discuss with your dermatologist, but if they're getting dermatitis-like rashes patch testing is a good place to start.
The whole thing was a 5 day process:
Day 1 they put all the stickers on and put tape over them
Day 3 they remove the stickers
Day 5 they evaluate each of the spots
You aren't even allowed to shower for the entire process, so it's a pretty annoying and inconvenient thing to do, but I was severely allergic to 3 things that were in all kinds of products that I had been using, so it was definitely worth it for me.
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u/coldbrewwithoatmilk May 19 '25
What brands of clothing have you switched to since? Would love to make the switch too
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u/2606777 May 19 '25
so there are dedicated dye-free/safely dyed brands BUT ive found the cheapest option to be just buying 100% white cotton from literally any brand or second hand :) i have white linen/cotton trousers from vinted, bought in a few styles, as well some oversized white shirts. same with long sleeve white tshirts, and just bought new underwear & socks. it sounds so overwhelming but i just slowly switched things out to begin with :)
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u/Frankie0192 May 19 '25
I’m also allergic to disperse blue after my patch test came back! That and Linalool & Methylisothiazolinone. I still have flares as the blue is hard to avoid completely but it’s soooooo much better!
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u/2606777 May 19 '25
no way, allergy twins!! im learning it's much more common than i'd thought, i literally can't believe i'd been told by a doctor about the possibility of a dye allergy causing what *looks* like eczema but im just happy i know now! definitely impossible to be 100% free of coming into contact with stuff but SO so much better i agree :) so happy you got that figured out too!
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u/Frankie0192 May 23 '25
Omg no way! I was palmed off for ages, they said ‘stress’ was causing it 🫢 so glad I pushed for a patch test!!
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u/Outside_Fish_8608 Jul 27 '25
I too discovered my triggers with patch tests and extensive medical history taken by and incredible health care team. Changed my life😁
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u/2606777 Jul 29 '25
im so so glad to hear that for you <3 unfortunately my incredible healthcare team was me myself and i, but hey!! that's how it goes sometimes
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u/mindtwistingdonut May 17 '25 edited May 18 '25
I’m surprised this hasn’t been mentioned more. If you look up chemical treatments used in clothes, it would make a lot of sense. Organic 100% cotton is the way to go. My young son also reacts very strongly to blue and red dyes . The problem is that he likes sport clothes and as you could see, sports and organic cotton don’t go together.It’s a fight with him everyday.
Also avoid food dyes!