Severe Eczema Teenager

[GlitteryUnicornSparkles]

I’m hoping someone may be able to offer some advice. Apologies if it’s long I’m just trying to give an accurate picture.

My son has just turned 16. He has a history of asthma (though he seems to be growing out of this) and a long list of allergies.

For many years he’s struggled with heat related itchiness on his hands and feet / ankles such as after a hot bath or shower, or getting too hot in bed (I have the same issue, with my legs), Dr said its quite common and theres a name for it I can’t remember and its not really a concern.

2 years ago he suddenly developed what was diagnosed as eczema on his hands, they were very dry and itchy, his fingers were splitting when he moved them and he was covered in cuts and had removed all the skin up the outsides from scratching. We tried every cream on the market to no avail. Dr’s prescribed emollients to leave on overnight which helped a bit but overtime this extended to his arms. Again the Dr’s tried different creams just reiterating he needs to be using at least 4 times a day including during school which he struggled with a little.

He then started to complain his face and neck were starting to feel dry & irritated, he was told he could use the emollient on his face so he was putting that on at night. We then got a notification that they were changing the brand of emollient but did not say it couldn’t be used on his face. Nothing was helping his arms at this point and he was cut to ribbons, they tried a steroid cream (which states not to use on broken skin on the leaflet) but it made him sting so badly he wouldn’t use it. One night he got hot, the emollient creams were runny and ran / got wiped into his eyes, he had a pretty bad reaction and he rubbed away 8/9 of the 11 layers of his corneas and ended up in A&E having to have anaesthetic eye drops put in every 20-30 minutes due to screaming with pain. He was then referred to an ophthalmologist and had to have drops in his eyes for several months. Whilst he was in A&E he was so irritated and clawing it his skin and bleeding everywhere that a Dr came & prescribed him oral steroids, antibiotics because they said his arms were infected and told him to take piriton on top of his normal antihistamines that he takes for his allergies to help with the itch. They made such a difference but of course as soon as he finished the very short course it all just flared back up. The Dr text to say the new emollient was not safe for use on the face and changed the emollient back!. Prescribed more creams.

He then started with issues on his legs. A dozen trips back and forth to the GP we just keep getting told ‘use them more’. He’s tried steroid creams at low dose that do not help at higher doses sting. He then developed the eczema down his sides. The GPs were of little help. Eventually they referred him to a dermatologist (exactly 12 months ago now).

Over the summer months his skin did improve quite a bit which helped him cope a little.

Come autumn / winter it’s just gone downhill rapidly. He shaved his legs because he thought it would help get the creams on better. After more antibiotics for infection, another dose of oral steroids and multiple weeks of topical steroid things were much improved, until of course he had to stop the steroids again, even though he weaned down strengths. We keep getting turned down for repeat prescriptions of standard cream too because he’s ‘using too much cream’ its a bloody battle to get enough.

At this point he was getting upset because some days he physically could not shower for the pain and wouldn’t leave the house without showering. Sometimes the irritation is so bad he’s punching walls out of frustration. He’s had a tonne of time off school. He’s doing guitar and engineering at GCSE, two subjects he loves but heavily involve using hands which he struggles to do. He was / is barely sleeping so was / is constantly tired and was put on prescription strength / addictive antihistamines to try help with the itching and to help him sleep but they did nothing. The GP wrote an exopodite letter to the Dermatologist in December.

In Feb my mum paid for him to see a private dermatologist who prescribed the tiniest tubes of Protopic given the size of area to use twice a day, however he’s been told he needs to cover up and stay out of the sun because the cream increases the risk of cancer - awesome just as we are heading towards summer. Its done nothing and his skin is getting worse.

We are now at a point where it’s literally his whole body. At home he won’t wear clothes because he says it hurts when they touch or rub against his skin. Some days the thought of showering makes him upset because it hurts so much. He barely leaves his room for this reason and has missed a tonne of school due to the same. He’s not only sore but very self conscious of how bad his face & hands look. He no longer goes out socialising with friends, doesn’t want to attend prom etc. He just sits in his room covering himself in creams when hes not in school. He’s perpetually in a bad mood because he's sore, irritated and tired which makes homelife stressful as does everything he touches being covered in greasy slime. I’m constantly having to walk round wiping everything he’s touched.

He showers once a day, he uses very cool / cold water. He uses prescription shower cream. He’s on antihistamines. We’ve replaced his bed, mattress, duvet and pillows and they are all anti-allergy & have anti-allergy protectors. The emollients make his bedding disgusting and thick with slime so he washes / changes sheets every few days. Everything is washed at 60 degrees c. We tried changing to non-bio washing tabs and removing fabric softener of any kind hes only getting worse. It’s having a massive impact on us both mentally as well as him physically.

We finally have an appointment with an NHS dermatologist in 3 weeks. I’m worried that all they are going to do is prescribe more bloody creams and turn us away.

Has anyone found something that actually helps or can advise on things to discuss with the dermatologist because this last two years has been pretty awful. He’s had other health issues on top of this so its all just getting a bit too much.

Sorry if I’ve rambled. Thank you if you made it to the end.

Totally understand about UV. Do you have a red light machine? If not get one from Amazon. See if it works for him at all. It won’t harm him to try it. I found it relaxing and helpful when I was really bad. It made me have to try and find calm for ten minutes. If it doesn’t work for him return it. It’s definitely worth a try xx

@GlitteryUnicornSparkles she did have the tablets beforehand, I can’t remember what they were called. But it’s part of the process leading up to the injections, if that doesn’t work. They made DD feel sick and a bit out of it with little improvement to her skin, and didn’t stay on them very long.

I went to the follow up appt with her, prepared to really lay it on thick about the affect on her mental health, relationships, work etc. she was early 20s.

I didn’t need to butt in … the doc took a look at her, still horrendously sore, she said she wasn’t getting on with the drugs … he said the injections were the next step.

Best of luck. I could have cried looking at how sore she was, I’d rather it had been me.

I have lifelong eczema. The only time I got relief was when I had methotrexate cycles during chemo.

For relief from itching, Piriton tablets are good.

But, you could also look at diet and stress.

Dairy products and citrus fruits cause a flare for me; and I could barely hold a pen when sitting exams.

Hope your son gets some relief. It’s a miserable condition to live with.

It's been a few weeks since I last posted an update but today we finally had the appointment to start treatment. 3rd appointment, 3rd different Dr.

The Dr that DS saw today was by far the most thourough Dr we have seen yet. Normally its 'yes you look horrific lets get you some treatment sorted' and kicked out door in 10 mins flat. Today we thought we'd just be in and out collecting a prescription but were actually in for around 45 minutes. 😱

The Dr asked DS his occupation, I said he doesn’t have one he’s in school! She frowned, looked him up and down, looked at me and said “oh, right”! 🤨 Not sure how old she thought he was.

She then asked him what changed 2 years ago to make him suddenly develop eczema as something had to have triggered it. We told her literally nothing changed but she was adamant something must have. She asked about changes in diet, changes in routine, stressful life events, if we’ve moved house, has he fallen out with friends etc etc.

She asked about whether it ran in the family I said not on my side but we don’t know about his Dad’s side (no contact.)

She then said eczema is generally a reaction to something either via the skin, the airway or the digestive system.

She grilled us on diet and his toileting habits and said it’s probably not dietary, which leaves skin and airways and we know he’s allergic to the cats, dogs and dustmites, so I get the impression she thinks this is the culprit. She asked if we had anyway of him going to stay with someone else for 3 weeks that has no pets and only hard flooring (no carpets) to establish if the trigger is something purely at home but I told her thats just not feasible as everyone we know has cats and/or dogs. She said we should find a way to try! However asking us to trial this at the exact same time as starting the drugs makes no sense to me because how do you know whether it’s the environment or not when the meds will improve it either way!!? That should have been suggested ages ago surely? 🙄 Not that it’s actually feasible.

She said she would request new allergen bloods along with his monitoring bloods but asked what allergens I thought she should test for other than the already knowns!? (I don’t know, you’re the bloody Dr, what sort of things do you normally test for!? - I phrased it a bit more politely than that 😂), I mentioned checking for food intolerances.

Her assistant asked if we’d had patch testing done, I said no but that I thought it was something that would be beneficial, the Dr bluntly replied “I can’t do that today”. If my understanding from Google is correct he needs to have clear skin and not be on medication for patch testing so that's probably off the cards for a while now.

The last Dr we saw told us DS could stay on these tablets for up to 18months and if he flared back up after stopping he could go on to Dupixent, this gave us hope he would get a decent period of relief with a back up at the end. However this Dr told us this is purely a short term treatment of a few months for the purpose of finding his triggers so we can eliminate them and he can improve his skin and avoid flair ups through avoidance, we can't expect to rely on longterm medical management as the risks are too high. So this has put a bit of a dampener on the belief he'd get a decent term of relief. Depending on the triggers lifelong avoidance might not necessarily be practical either especially if it is down to his known allergies. Dust-mites are permanently in the environment to some extent and even if I took the extensive step of rehoming all of my (now quite elderly) pets which pre-date this issue that would mean never visiting or staying over at family or friends houses ever!

The Dr told us we have to purchase a blood pressure monitor and take readings at home twice a week and write them down and take all the results with us each time. So I’ve just ordered one.

She told us his entire wardrobe has to be replaced with clothes that are 100% cotton only as other materials will irritate the skin. I’m beginning to think she thinks I’m rich!

She said that to start with blood tests should be weekly but spaces are short so she wants us back in exactly 2 weeks to give extra time for bloods and would only prescribe 2 weeks of meds. I told her that we would be on holiday in exactly 2 weeks time, she looked really pissed off when I said that and asked how far are we going!? (Was she hoping it was still in driving distance!?). I told her I’d be in Wales and back on the 5th, to which the response was a huff, followed by a comment that she would have to make it 3 weeks then which is not ideal and she isn’t in that week to be able to see us, she said to make sure the bloods are done at as close to the two week mark as possible as they need the results to be in for the 3 week appointment. She has only prescribed him the exact 3 weeks of treatment. The annoying thing is this wouldn't have been an issue if he'd been seen when he was supposed to be in the first place yet I'm being made to feel like I'm being difficult.

Based on my experience thus far I’ll put money on it his drugs will have ran out and he’ll be due more bloods before they can find us another available appointment!!!

So it seems that tomorrow I’ll once again be chasing that up, to likely be told I’m dreaming if I think I can get in that quick!

Bonus is it looks like shes keen to get to a definitive cause, downside is DS may not get the longterm relief he was hoping for. Anyway here's hoping he starts to see some improvement soon. 🤞

Dermatology seems to be an absolute mess everywhere at the minute
my appointment was cancelled and rebooked for January! I rang and said no I need my meds so they’ve done my Xolair without an appointment
there’s no way I’m going back to hives every single day

Oh no! It’s ridiculous isn’t it. At least you managed to get your meds prescribed which is a bonus. I don’t think they can do that with the Cyclosporin as it / your bloods have to be very carefully monitored on a regular basis.

I find it madness that you can’t book your next appointment whilst you are already there, and the Dr can’t see availability when deciding they want to see you, you have to go through the whole rigmarole of being given a phone number to go away and ring a central line thats only open shirt hours on weekdays only to be told the Dr’s timeline isn’t feasible. The bloodline at our hospital isn’t even manned and answered by a person, you literally have to call and leave your details stating you wish to book an appointment and wait for someone to call you back to offer you a date. I rang every day for a whole week last time before someone even got back to me.

That is incredibly frustrating with regards to getting appointments and being doled out meds in short supply.

also the fact that the doctor does not understand that sometimes people just start reacting to things. It happens.

i will be honest though, you need to be prepared for radical lifestyle changes. They can be expensive. After my patch testing, I had to go home and throw out almost every personal care and cleaning product in my house. My washing machine had to be cleaned. Then every item of clothing I owned had to be washed fresh.

Both companies that make my safe toothpaste options are having supply chain problems right now, so I have had to resort to an expensive tooth powder. It’s gross in addition to being expensive. That is life with skin allergies.

As for visiting friends and family, that is nearly impossible for some allergies. yes, life might really be that restrictive. It depends on the cause, but even if you get a med like dupixent, it doesn’t mean your body can handle constant exposure, it just means your reactions aren’t as bad.

your doctor isn’t helping enough, but you need to realize that your attitude towards this isn’t helping your son.

Thankfully I already have 3 monthly bloods via haematology so they go off those which makes it less tricky
the nurse who rang me actually told me to complain to PALS then in her words “we might get more staff”

My DD Has been prescribed an immuno suppressant By a dermatologist, I’m surprised that a dermatologist would not prescribe some kind of medication, rather than topical creams?

Hi OP. I haven’t read all of the replies but have been through much of what you have. My experience is that the NHS is very limited on what they can do/offer in terms of help. We went down the private route and were treated by Dr Boyden who uses Dr Aron’s regime. Please google it and consider giving it a go. My son’s whole quality of life has changed and we have slowly tapered to the point he is no longer on steroids 4 years down the line. He also has food allergies, etc but the eczema has to be treated aggressively with strong steroids and slowly tapered off. No amount of emolient or food avoidance will change things while they are so severe. I wish you and your son the best of luck.

The only thing that fixed me is dupilumab injections fortnightly.

All the other treatments are pissing about at the edges and wasting peoples lives

Gosh I’m under the severe eczema clinic and this sounds nothing like my eczema. I’ve been using steroids fairly non stop for over 15 years so not sure why they’re being stingy. I’ve never known antihistamines be addictive though. And I’ve never been told to avoid sun or been warned of cancer and I’m prescribed 100g of protopic as often as I like. So that’s concerning for me.

When he turns 18, options open up massively from methotrexate to light therapy, JAKS INHIBITORS and biologics like dupilumab. The derm may be open to using these now if you ask about them as he’s so severe.

Also it sounds like he’s using the emollient… too much. If he’s constantly softening open wounds they won’t heal.

@NewbieYou not to contradict you but I'm not sure you have to be 18 for Dupixent: my daughter is only 8 and has been prescribed it (severe eczema since being a toddler)

Sorry just seen youve already been… Im confused about the lifelong medication comment as they’ve never said to me that they expect me to come off my meds ever. They also happily blood test me every 3-6 months. None of this weekly stuff. Maybe it’s because of his age.

Also confused that you know hes allergic to pets but wont re home your pets? It very well could be that his allergy to pets has worsened! Allergies evolve!

@GlitteryUnicornSparkles

Sounds like the doctor is giving your son the runaround, probably because dupixent is expensive. I'd push for it, saying it's affecting his quality of life, he's anxious, in pain, etc.

I cannot recommend dupixent enough, my daughter's skin has vastly improved since taking it.

Oh interesting, they refused me any treatment past steroids, Protopic or steroid pills until I turned 18! I only got dupixent when I was 21 (after they’d exhausted everything else). That must have changed in the past 10 years. Sadly dupixent failed me anyway after 2 years of working.

My eczema was completely cleared this summer for the first time ever. Turns out Sun, sand and sea in Asia was the ticket. Returned to the UK and it returned with a vengeance within a week… so something about the UK is bad for eczema.

OP - have you got a water softener? I’m suspicious that the hard water in the UK makes eczema worse.

I grew up with severe full-body eczema and I absolutely feel your frustration and apprehension! Creams and ointments did little for me; for sure it was better with them than without, but that's not to say my skin was ever good from creams and ointments alone. It only ever went from "debilitatingly awful" to "really bad", and that's having tried combinations of oral antihistamines, betamethasone, mometasone, and tacrolimus. The best my skin ever got was using this truly disgusting seaweed ointment my mother- a fellow sufferer- and I called "miracle cream." In hindsight, it still wasn't great. I never went more than six months without a skin infection and a course of antibiotics, and my school and university attendance suffered. I was hospitalised for it once as a toddler, and had to use the dreaded wet-wraps. There was nothing more to be done, we'd tried everything available, so I was released from specialist care by my teens.

Currently, I am almost entirely eczema-free. After a particularly rough year during the pandemic I asked for a new specialist referral, as I'd heard of dupilumab. I got extremely lucky, as I didn't access of this through UK healthcare, that I was eligible for biologic treatment without the pre-requisite year on immunosupressants. It has saved my life. I had to jump through some hoops still- mostly a lot of blood tests and a chest x-ray- but within a day of my first injection I wasn't itchy. I had never not been itchy. I've not had a skin infection since I started it! My skin is still naturally very dry, and it heals a little slower than it did previously if I had a cut, but that's negligible. It's amazing to be able to work, study, and travel unimpeded, but it's the little things that I love the most; being able to have a pain-free shower, swim in the sea, use nice non-prescription soaps, wear shorts and short-sleeved shirts! My mental health has improved alongside my physical health, too.

I sincerely hope the specialist will be able to offer you and your DS something better than creams, because I know how demoralising it is. Personally, my advice is not to shut up about it. Ask at every available opportunity about the biologics. The pre-requisites for dupilumab are ridiculous, but I can see a future in which they're not so strict. Already where I live they're changing things so that a GP can handle my prescription on repeat with only an annual specialist checkup, and more and more people are being prescribed this medication as it becomes more widely available. If your son can stick out that horrible waiting period on immunosuppressants, try to keep in mind that it's not indefinite. It's easier said than done, I know. I wish you and your DS the best ❤

Yes he started Cyclosporin yesterday after a long battle. They said blood tests start weekly then gradually taper down. We’ve not been told that that he’s too young for dupilumab / dupixent just that he can’t go on it until he has tried at least one immune suppressant first. We we’re told by the last Dr he could stay on these for 18 months then if he re-flairs on stopping he can go on dupixent whereas the current Dr says he can’t have these longer than a few months and seems to think once its done thats pretty much it. This Dr is determined to find triggers to just avoid yet the private consultant we paid for told us that all the measures this Dr is insisting we try are pointless and rarely work as eczema is a purely a genetic condition.

The problem I’m having is that every bloody doctor seems to give differing and completely contradicting information / opinions (you only have to look at this thread to see that). There is zero consistency and seeing the same Dr more than once seems pretty much impossible.

Ref the pets, his allergies were not flagged as severe, he was prescribed antihistamines and nasal spray for this and we were subsequently told by another Dr not to take too much stock of the blood allergy tests as they are notoriously unreliable and they’ll often show you have allergies to things you’ve never reacted too! He’s been fine for years, the eczema is new and only suddenly became a thing out of the blue 2 years ago and largely cleared up over summer last year. It’s very easy to say just get rid of the pets as someone at the end of a keyboard who isn’t emotionally attached however these animals are family, they are a big part of our lives and very much loved. They are not young or new additions they are getting on in age and massively pre-date this issue. One of the cats is ‘my sons cat’, he’s also a working therapy cat, they have pretty much grown up together, they are practically best friends, they used to do everything together and he has told me himself that if I get rid of his cat (who’s currently undergoing recovery from an RTA) that he will never forgive me. They are not allowed in his room. It’s a huge decision to make at this juncture in their lives when theres also a chance it may not make any difference. Rescues are overflowing, re-homing older animals with known ailments also isn’t going to be as simple as just waving a wand and them having lovely new homes in the space of a week. Yes if it comes down to it then difficult and heartbreaking decisions may have to be made but realistically it still wouldn't happen overnight.

this is a nightmare for you all. I have been through this myself, feeling like I’m going mad as no one is listening.

Thank god he has you to champion for him.
in the end mine was as simple as low B12. I hadn’t had eczema for 15 years. It came on as a reaction to the Covid jab (I’m not anti vax just didn’t realise even the prick of the injection can disrupt your immune system).
It could be stress for your son and nothing to do with the animals etc. These experts often forget to think of the emotional side. I was asked if my car could be rehomed … never!!!

We are here to listen to you. I really hope the immunos work for him, it could just realign his immune system and he may be ok going forward. Everything crossed.

As you are in the UK can you easily get to London? Guys and St Thomas Hospital dermatology department, go to your doctor and see if you can get referral there. I was finally given duplimab, didn’t require me to go on another auto immune drug before. Game changer. I was covered in eczema and rashes and so itchy all the time. Within a couple of weeks it started to clear. Pretty soon it was completely gone. I now not only have no eczema, my skin has improved all over and is not dry anymore. I think it’s terrible that they are making your DS jump through long complicated hoops and mess his life around for months when this could be sorted in a few weeks.

@Ponderingwindow I’m not sure why you say my attitude isn’t helping my son just because I’m realistic that pure avoidance of potential triggers for life may not be wholly realistic depending on what the triggers are, and have yet to be proven.

My attitude also stems from 2 years of battling to be taken seriously and being constantly told to just use more cream. Having to fight tooth and nail for a referral even when it’s clear creams aren’t working and he’s struggling. Appointments being cancelled, never being able to get an appointment in the timeframe you’re told you need to make one by, being sent for incorrect tests that then have to be redone and hold up treatment, never being able to see the same Dr, every single Dr giving different and contradictory information so you never know what to actually believe. Fighting to be able to take his creams into exams and having to jump through hoops to get there. It’s exhausting and hard work constantly having to chase everything because the system is shit and thats before having to deal with his irritability and lack of sleep on top, not to mention the amount of time taken off work for countless appointments.

We’ve tried every cream under the sun at great expense, We’ve tried holistic creams, I’ve purchased cotton gloves, air purifiers, gutted and replaced everything in his bedroom, bought all anti-allergy bedding and mattress put him on supplements, paid for a private consultation, done research, purchased monitors am now having to replace his clothes. It’s not only been a massive strain mentally but also financially and may yet face having to make heartbreaking decisions.

Its relentless and all consuming, and as suspected I have called this morning to book the 3 week appointment (which should have been a two week appointment) to be told the nurse / assistant has requested a 6 week follow up not a 3 week follow-up, so shes then had to go in to the files and look at the Dr’s notes to confirm that I am correct in that it should be 3 weeks and not 6 as has been requested on the form and as I knew would be the case I was told that that isn’t feasible, there just aren’t any appointments with any Drs for at least 4 weeks but he only has enough medication for 3 weeks and will be due more bloods by then which can’t be done until he’s seen the Dr! The secretary has literally just said she wishes these Dr’s would actually check their calendars for availability and prescribe appropriately rather than just throwing out unrealistic timelines and leaving them to deal with the fallout. It now has to escalated to senior management because he can’t just stop the drugs but equally there aren’t any appointments before they run out! I have to go through these saga’s every bloody time! I await a call back.

So yes I’m getting annoyed and frustrated and not knowing what to do for the best is with every appointment giving contradictory information is stressful.

Sadly London is just too far, especially for regular follow-ups, it’s around 4.5hrs each way in good traffic but I appreciate the suggestion.

With regards water softeners, yes I have had a filter installed on the shower.

To be honest After the first few appointments, I only go back once a year. It might be worth the trip. 😊

This just came up on my feed so I know I’m super late. I read all your replies so see you are very much battling for help right now and trying everything.

my 12 year old daughter has eczema - had it her whole life but it got much worse with puberty and we are battling it daily. Mostly she’s just pretty itchy all the time as many options just aren’t suitable for her - she’s also autistic with sensory challenges so finds a lot of the creams and such unbearable. We have a strong steroid cream for when it’s needed and loads of lotions and whatnot for every day.

she is very allergic to pets so we are careful about exposure to animals. Unfortunately I’d agree with many that the cats are likely a massive issue. I won’t tell you what to do of course as there’s no good answer here but it’s a huge trigger for my daughter. She loves animals but we don’t have anything furry at home (got a bearded dragon recently after much begging and so far that seems okay) and we make sure she changes all her clothes and showers if she goes to a friend’s with pets. She is hugely reactive to scented anything too so we have all unscented everything at home and bring detergent on holiday to wash all her towels and bedding (we mostly do self catering)

the battle to get anyone to take this seriously is real - we recently started going to an extortionately expensive private dermatologist in desperation. She prescribed lots and lots of antihistimines and a medication specifically for hives. Plus an anti fungal to start as apparently some of this was an infection brewing. That helped a bit. She also recommended we cut out red fruit entirely as there’s been some research into that (tomatoes, strawberries, etc) and said it’s worth trying a nightshade elimination diet as sometimes that might help. We have done neither yet as my daughter’s eating is pretty restrictive already and we’ve been travelling but it’s on the list for when the schools go back. Just passing on the things on my list!

I do get DLA for her but it’s the autism as well as the eczema so not sure how it would calculate for just one issue. But worth starting the application for PIP now as this is clearly a massive part of his life and you’d benefit from the financial support. I use it for the private dermatology and some therapy for her social skills.