Patch Testing for Allergic Contact Dermatitis – My Experience

patch testing contact allergic dermatitis lips

Just a few of the many, many patches I had stuck to me!

Last week, after a long, long wait, I finally had my patch testing for my suspected allergic contact dermatitis. I wanted to talk about my experience, as I did a lot of googling in the run up to it and couldn’t really find that much other than official ‘medical’ type documents. So, hopefully this will help anyone looking to know what to expect from patch testing (although hopefully not from the results, but we’ll come to that!)

If you’ve been following my blog for a while, you may be aware that I’ve been suffering with some sort of mystery dermatitis on my lips for some time (well over a year!) now. It appeared out of nowhere – suddenly they became red, cracked, sore and flakey. Not only painful and fairly unsightly, but making it pretty much impossible to wear lipstick for any extended amount of time as this just seemed to irritate the situation further.

Up to this point I’d already tried a lot – numerous GPs appointments and mistaken diagnoses of vitamin deficiency or possible inflammatory disease, giving up dairy (which seemed to work at first but soon made no difference what so ever), and an appointment with an immunologist for pinprick testing to check for histamine type allergies (the instant type reactions you get to say, peanuts) which all came back clear. A referral to a dermatologist (finally!) followed, where she basically banned me from all skincare products (which was unfortunately timed very close to me injuring my eye and having an eye makeup ban, causing me to write probably the most emotional post I’ve ever put up on this blog.)

Her suggestion was that it was the most annoying type of allergy – suddenly my body had become allergic to something it had previously tolerated. The next step was patch testing, where I would be exposed to a number of allergens over a week, trying to trigger a reaction and therefore work out what was causing the problem. At this point, this was pretty much the dream. All I want is a nice list of things that, if I avoid them, my lips remain like normal human lips rather than those of a lizard queen. (Seriously, they are uncomfortable and gross looking, should you be curious there are some pics of them at no where near their worst in this post.)

After 3 months waiting, my appointments came through, and I diligently blocked out the time in my diary. Patch testing is a pretty involved and time consuming process. I made sure I was working from home all week (apart from one booking for a talk that I couldn’t really move as it had been in the diary for over a year and I didn’t really want to miss out on the earnings, and it was towards the end of the week, which is when, I understood, I’d be the least uncomfortable.) Honestly, I felt very, very lucky to be self employed during this process. The leaflet provided in the run up to the tests says you’ll be fine to work, but I think if I’d been in a normal office environment during this time it would have been pretty difficult, for reasons I think you’ll see as I go on to describe the process!

So, on the Monday morning, off I went to Birmingham Skin Centre at the City Road Hospital. I was, as instructed, wearing a t shirt that I didn’t mind getting damaged, and an old bra (see, not exactly ideal office-wear!), and had with me a MASSIVE bag with all of my skincare products and makeup in. (You are instructed to bring with you all products that you use regularly.) After a sit in the waiting room I went in to see the Consultant Dermatologist, who promptly laughed at the amount of products I’d brought with me (apparently I had been beaten by only one woman, who had brought a suit case full with her, I feel like I could have won if I’d really tried, having only brought one lipstick from each manufacturer with me!!)

She went on to take a detailed history of my issues, cross referencing them with my notes and checking out photos from the ‘lip diary’ I’ve been keeping (Honestly, this would be a top tip from me – take loads of photos of any flare ups you have and date them and write notes about what you’ve been doing/eating/wearing/using, my lips were pretty good on both occasions I’ve seen a dermatologist and could probably be mistaken for normal dryness, the photos enabled them to get a good idea of what the problem really looked like and how often I experience flare ups). It was then time for me to strip off and she examined me to make sure I didn’t have any other problem areas (obviously it would be easy to miss them on your own back etc.) but nope, just my lips, and sometimes my hand (and on one occasion my eye but this seemed to disappear as quickly as it happened and has never happened again.)

At this point she went through the lengthy process of checking all of my products to see which would be tested, and here we hit a small snag. I hadn’t realised that the high end products didn’t tend to have ingredients listed on them as they had originally come in a box. So here’s my next tip – check if any products that you are taking don’t have ingredients on them, google them, and print them out to take with you for your first appointment. 

I then went back out to the waiting room, and after a while was lead into a big room with curtained off areas where the patches would be applied. I had to take my top off and undo my bra, and pop on a robe, and then a nurse came into the room and applied the patches. 189 different chambers of allergens, both my own products and common irritants, were applied to my back, back of my neck, torso and upper arms and secured with surgical tape. I was then instructed – no working out, no showers, sleep on my side and tape a t shirt to myself at night to stop it riding up, and generally try to make sure the tapes remained in place. I was given a roll of spare surgical tape and sent on my way, around 3.5 hours after I’d arrived.

The trickiness of this became apparent as soon as I tried to pop my t shirt back on – any reaching or extreme movement and I could feel the tapes around my shoulders and sides start to come unstuck. By the time I got home I was pretty incomfortable – the tapes were quite itchy and I was so covered in patches that I felt like a surgical tape mummy! Also some of whatever they were testing started to seep through onto my t shirt, and I began to smell what can only be described as ‘chemically’. Fast forward through 2 very uncomfortable nights sleep taped into my jammy top and a couple of itchy, smelly day’s work from home (see what I mean about a ‘normal’ job not being ideal?!), the low point of which was probably one of the patches coming off my back almost completely when I changed my top and having to call Dan back from work to come and stick it back on as I couldn’t reach it (after trying such creative methods as using the handle of a hair brush, and placing tape on the floor and trying to reverse-crunch backwards onto it) and it was Wednesday morning and time to go back to the hospital.

The patches themselves were removed (which felt something akin to waxing. Ouch. Apparently men have their backs shaved before the process!), leaving just number tapes to identify what had been where, and a very sticky mess. A dermatologist came in and examined me to check for reactions. My stomach started to sink when he stated that there wasn’t ‘much sign’ but then the consultant dermatologist came in and reexamined me, and there were a few patches that showed signs of developing into a reaction. Time would tell on Friday. This appointment was again pretty much the whole morning.

patch testing allergic contact dermatitis lips skin eczema

Wednesday, after the patch removal. I’m still trying to get all the sticky marks off!

So, by this point I was covered in sticky tape residue, and still unable to take a shower. Urgh. At least I could now get a better night’s sleep, and I managed to find an outfit that covered the remaining tapes and sticky marks so I could go and work on the Thursday night.

I became a bit obsessed with looking for reactions – there were a couple of pinkish areas, but there was also quite a bit of staining from whatever they had been testing so it was quite difficult to tell.

Friday morning, and I was back to the hospital. One dermatologist came in and examined all the areas where the patches had been. I could tell from his expression that it wasn’t great news. The consultant dermatologist came in and reexamined me. No signs of reaction.

My patch testing was completely inconclusive.

She seemed a little surprised when I completely broke down in that little curtained off cubical. She tried to reassure me that there was nothing sinister wrong with me, and didn’t really seem to understand that I believed her, and was just incredibly frustrated not to get any answers. Fortunately a lovely nurse was on hand with tissues!

So where does this leave me? Well, there are, apparently, a couple of possibilities. Firstly, that it is contact dermatitis and we just didn’t test the thing that’s causing it. However, the dermatologist seemed to believe that it was more likely that this is a case of persistent irritant  dermatitis rather than allergic dermatitis, for which there isn’t a proper test. She thinks that it is a lip product or something coming into contact with my lips that is causing it, and any skincare or cosmetic product that I use elsewhere on my body or face isn’t an issue as I’d also be flaring up in other areas where I use it. An apparent possible cause is even my own saliva (although she did say that I didn’t appear to be an ‘excessive lip licker).

Her suggestion was, basically, bin off wearing lipstick. I explained again that it’s pretty much part of my job, whether it’s presenting myself professionally when styling or filming, or reviewing and testing lip products. Her reply to this? “Do you really have to wear it? You can wear other makeup.” I tried to explain that I was the colourful girl, the one with the bright lips every day, and although I know it’s stupid to be this upset when there were people around me getting diagnosed with skin cancer, that it had been a long and frustrating process and I felt a little like a piece of my identity was being taken away from me.

And, more importantly that I don’t even think that lipstick is the problem. Sure, it irritates and flares up my lips, but it only irritates something that is already, constantly, there – an uncomfortable, grainy-feeling tightness in patches over my lips. I can predict exactly the areas that will flare up, and they seem as likely to flare up with stress, or sweat, or getting chilli sauce around my mouth!

The suggestion at this point is ROAT, or, Repeated Open Application testing. So, twice a day for 10 days I apply a lipstick to my inner arm. Apparently if I don’t have an irritant reaction on my arm after 10 days, it should be fine to wear the product on my lips. I am a little sceptical, but more than happy to give this a go (and really do hope I am proved wrong!) and so since Friday I’ve been walking around with a little blob of Tarte Lipsurgence on my inner arm. So far, no reaction. But we’ll see, and I’ll keep you updated as to how the ROAT goes.

The good news is that I’m now off my skincare ban (woohoo!) I’ve been advised to reintroduce products one at a time after going ‘cold turkey’ for a few months, and so I have been very excited to start cleansing my face with my favourite Emma Hardie balm again. Hopefully this is just the first step to getting back to my old self again!

 

 

  • Oh I do hope you find a reason soon! It must be so frustrating!

    Becca
    http://www.QueenBeeBecca.com

    • Emily_Jayne

      Thanks Becca, yes it’s been incredibly frustrating, I just miss wearing bright lipstick without a second thought so much!

  • Terri Brown

    Ooo you poor thing it’s sounds awful and very stressful especially not getting any answers. Have you tried forever living aloe Vera lip balm the aloe Vera is amazing at clearing up a number of skin irritations and may work as a great base for you. Worth a try here’s a link incase you want tk try if out http://thestrawberryfountain.com

    • Emily_Jayne

      Hi Terri, thanks so much for the suggestion! Unfortunately I’ve already tried aloe, and although it did sooth a little, it didn’t really help clear up the problem, and I now have a prescribed ointment that is good for soothing on a day to day basis. I think there’s obviously something out there that my lips don’t like and I just need to figure out what it is!

  • I saw your tweet and thought I’d hope across and read as I have had the same tests but did get a couple of results. I’m not aware of your back story but If your lips are flaring have you been test for food allergies?

    • Emily_Jayne

      Hello! thanks for visiting the blog! I had pin prick tests a few months ago that included dairy protein, but the GP seemed to think that if it was a food issue I’d have flare ups on the inside of my mouth too? I don’t know, considering going private at this point!

      • from my own experience some GPs lack knowledge on allergies, I’m not sure on any “rules” why a reaction on the lips must be followed by one inside the mouth. I have Oral Allergy Syndrome and that sometimes makes lips tingle before things are even placed into my mouth.

        • Emily_Jayne

          Ooh, interesting – yes allergy was definitely not their first call – I had to persuade them I didn’t have an infection as I just kept being given antibiotics!

  • Sue

    Hi – just found your blog! I’m going through the same thing – been through to allergy patch tests at Watford hospital and now Guys hospital and neither coming up with any reaction to their patch tests. And yet i apply the product myself to my inner forearms for all the products i know i have a problem with and hey presto i get major reactions! So at my second appointment on Wednesday they then gave me two of the products to retest and tommorow i’ll know if they show anything up. I’m convinced that testing for some products where our skin is weather beaten/ tanned/thickeror not previously compromised by product reactions, is that less of a reaction will show up, whereas on my pale inner forearm i seem to show the reactions easily! Just wondering if i know more about my skin than the experts???? I know i’m allergic/severe contact dermatitus to some suntan lotions suddenly since 2014 (im 49 years old) and i believe to head and shoulders with eculyptus and nivea sensitive body wash – i tried the later two here neat and they showed up nicely under my own patch testing but the dermatologist dismissed these, as i had used the product neat on my arms when under normal useage it would have been diluted! So before i go to bed tonight i must dilute these two and re-patch test them myself ahead of my third and last appoitment tomorrow where i have a horrible feeling i won’t have progressed any further with any answers than i did at Watford Hospital!

    So what was the outcome with your skin problem?

    • Sue

      As at today 16/10/15 – Feeling very disappointed after my second week of patch testing (first week at Watford hospital and second time at Guys hospital) and the testing showed up nothing (other than rubber in the first batch)! Despite the fact that i did my own patch testing alongside theirs on my lower inner forearms and all the items i suspected clearly showed up as a skin irritation! But it turns out when you have patch testing they only test you for allergic reactions and not they don’t test irritants on your skin! So at no time have i been tested for sodium lauryl sulphate etc. I couldn’t believe it! So Guys hospital vaguely concluded i had ‘sensitive skin’ but wasnt allergic to anything despite my clear self test results showing bright red itchy skin! You couldnt make it up! So i’ve sacrificed two weeks of half pay due to loss of earnings to attend all the patch testing sessions and travel costs to get to Guys, which i viewed initially as an investment into knowing what was causing the skin irritations so i could ensure i only bought products without ‘xyz’ ingredients! and now i’m no better off than i was earlier this year!

      Anyone else had this situation and what did you do next?

      • Emily_Jayne

        Hi Sue,

        Thanks for your comments – so sorry that you’re still struggling!

        My ROAT testing hasn’t been that useful so far – no reactions on my arms but still had a couple of flare ups on my lips. However I have now had a reaction to the patch tests on my back over a month later! So, back to the dermatologists for me!

        Really hope that you get sorted soon – fingers crossed we both get to the bottom of our allergies!

  • Sue

    Ahh just one more thing – if you have a larger bottom lip that is sore and cracks, it is often a sign of irritable bowel syndrome (i learnt this when i did some face reading training) and i’ve been spot on with everyone i’ve mentioned it too who has a lip like this!

    • Emily_Jayne

      Thanks Sue – it’s more the surrounding area of my mouth that’s a problem, and outer lip area and only very occasionally does it crack through the bottom lip, but will bear it in mind!

  • Susan Mackowiak

    I had this problem years ago – for me, it was nail polish… can paint my toes but not my fingers. Hope this has cleared up by now!

    • Emily_Jayne

      Hi! Turns out nail polish was one of the things causing me issues – i’m allergic to a common ingredient! At the start of this we thought it might be gel nails so that was included in my first lot of allergy tests which came back negative, but turns out it was a completely different ingredient that was causing me issues (which unfortunately is in lots of other things too!!)

      • Amy

        Was nail polish a problem to the lips? Because i also wear nail polish on a regular basis.

        • Emily_Jayne

          Hi Amy – if you’re allergic to one of the ingredients it can be as people tend to often touch their mouths with their fingertips.

  • Amy

    Hi there, glad i came across this post. I’m wondering if anyone can help me – I was recently put on antibiotics for 3 months due to a rash near my lip (not connected to my lips). I tried it as i had exhausted every other option. I saw a private dermatologist who said to take the antibiotics for 3 months. Whilst taking the antibiotics, my lips became sensitive to everything including the facial moisturisers that i have always used (i also suffer from eczema so use Eucerin creams which have been the best on my face). I have always worn makeup and lip products also. Whilst on the antibiotics, i decided to come off make up completely (as hard as it was) i thought the rash had something to do with makeup (which it didn’t as not wearing it didn’t improve anything). My lips became swollen, with red tingling spots all over the top and bottom lines meaning i couldn’t eat properly. They were sore and felt as if they were burning. If my moisturisers even touched my lips, they would swell with the symptoms mentioned. Whilst taking the antibiotics, my lips became a better, and nothing happened in terms of swelling. Then sometime later they started again. I decided to come off the antibiotics as i believed they could be the issue (although it was not a side effect on the leaflet). When i came off them my lips started to settle down. I then started to wear my make up again and did so for a couple of days and my lips were great. On the 4th day of wearing make up, my foundation may have touched my lips and with a Simple wipe (as i’ve always used to take off makeup), i took it all off before bed. The next day my lips started to swell again and got worse during the day. I am literally losing the will to live with my lips as i got the swelling when i didn’t wear makeup and then also when i wore the make up.

    I also attended City Hospital for patch testing around 2013 for eczema flare up’s. I was allergic to nickel and something in sun lotions. Makeup never caused me to have a reaction ever even though this patch testing showed it.

    I am so frustrated as my lips may never go back to normal and i enjoy wearing and testing makeup so much. It was my only hobby!

    Could anyone shed some light on this?

    • Emily_Jayne

      Hi Amy,

      So sorry you’ve been through this – I had such a horrible time when I was struggling with makeup and beauty products as they are something that I love. However there can be light at the end of the tunnel – since writing this blog I have been for another set of patch tests and been diagnosed with several allergens that are found in both food and beauty products/makeup. I’ve been working on cutting them out since June, and now my lips have recovered to a point where I’m able to wear lipstick without ingredients I’m allergic to a couple of times a week without problems, and am now exploring other makeup that doesn’t cause a reaction. Really hope that you find a solution, my only advice would be to go back to your GP and make sure they understand how much distress this is causing you.

      • Chris Mack

        can you give me an estimate of what this cost you out of pocket? just received a bill for mine and it seems rather high, even after insurance. thanks!

        • Emily_Jayne

          Hello! I’m in England and the costs were fully covered by our lovely NHS, so I’m afraid I can’t really help with this. Sorry!

  • Danielle Renaud

    Hi! i have also been experiencing the same thing. What are the ingredients you ended up being allergic too? Also, what lipstick brands work best for you to avoid the reaction from coming back? Thank you

    • Emily_Jayne

      Hi Danielle, I’ve now written up a post that will be going live next week with the ingredients I am allergic to. I’ve found that I can wear Laura Mercier Velour and Nars Audacious lipsticks without problems, but I would definitely recommend you getting testing if you haven’t already, as obviously results will likely be different for everyone 🙂

  • Alison

    This exact same thing is happening to me. Going on 3 years of suffering. Currently have the patch test on my back and praying for answers. When I read your post I started crying because you described EXACTLY what I’ve been going through- been to my PCP so many times and he says it’s just “dry lips”. Dermatology keep prescribing expensive steroid creams and then gives up and sends me back to allergy. Allergy says it’s a derm issue and sends me back to derm. Ive probably spend over 2k (I’m in America) trying to get an answer and so far NOTHING. No one is taking me seriously and they just shrug it off and tell me to use chapstick. I am praying my patch test gives me answers. I am so miserable.

    • Emily_Jayne

      Hi Alison – I’m so sorry that you’ve been having these issues, it caused me so much misery so I really just want to give you a big hug when I hear that my post made you cry! I really hope that your patch testing gets you some answers, and my gosh I can’t believe how much it has cost you, I’m so grateful for our NHS here in the UK.

  • Laura1985

    I am so thankful to have found this post!!!

    I’ve been having awful lip issues ever since a course of roaccutane for acne (synonymous with causing crazy chapping!)
    My experience went beyond the usual dry lips most people experienced, and I seemed to have a full blown reaction of mad clown lip redness.
    I suspect that one of the chapsticks / balms I was diligently applying became in irritant with excessive use.

    Now having come off the drug, the problem persists. The redness around the rims of my lips makes me look like I’ve missed my target applying lippy.

    I’ve been prescribed countless steroid creams, and have now finally been referred for patch testing.
    There is literally nothing else I can think of doing, and have tried without success for nearly 9 months to beat this thing.

    My only vice cosmetically is that for big or even social events, I cover the redness with concealer and then redraw my lip line with a liner. It looks fab, and you would never know … but of course I’m sure it’s making it ten times worse and if I do this repeatedly the soreness seems to increase.

    I can usually stomach about 5 days of the no makeup, pure shea butter routine before I break.

    What’s worse is that I have just gotten into a new relationship, and of course hit the concealer before any dates. I’ve even slept with it on to avoid the embarrassment of the big reveal!

    I truly feel helpless at this point, and can’t believe what a massive impact it’s having on my life.

    I looked for your follow up post but couldn’t find it. Could you let me know what your allergens were?
    I too wear gel nails, and when I don’t, always have a coat of ‘something’ on.
    If it’s as simple as baring my nails as opposed to my lips I will be quite frankly over the moon!

    Really hope to hear from you xxx