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.

Phototherapy has changed my son's life.

Hopefully the derm can come up with some ideas
My hives started getting so bad and I asked for another referral, under the choose to book thing I picked a hospital out of area as I knew they did the biologic I needed and my local didn’t
when I got my appointment it was with a derm I saw 20 years before when the treatment didn’t exist! He remembered me and I sobbed to him, immediately approved it and I’ve been on it ever since

it’s also a terrifying drug but I’ve had no side effects

You’re right about dupixent - you have to have tried another immune to be allowed it on the NHS.

I would ask for full blood work and phototherapy.

if asking for patch therapy I wouldn’t allow steroids as if he is suffering from topical steroid withdrawal, that will set him back.

I am thinking of you both xx

Agreed. Both my children's eczema flared up terribly in connection to diet. Tomatoes caused immediate flare-ups in both of them and gluten and dairy in the other. Don't be dissuaded by the dermatologist - there is more and more research now on the connection between diet and inflammatory response and how it could be worsening your son's eczema. This is a really useful article. eczema-5-ways-changing-your-diet-could-help

I did have to try immune suppressant before dupixent. They often want to try phototherapy as well, but I got to skip that because my skin burns so easily.

It’s just so upsetting that they are doing this so slowly. It’s not just a rash, it’s something that ends up impacting your ability to sleep and think.

Apply for DLA. It is a disability for your son because it is affecting his schooling, personal care, mobility, and mental health. The money is also there to help with extra costs associated with his health.

Hi Everyone, my son had his dermatology appointment today so I just thought I’d update you all after all the helpful advice given.

I researched all the options people suggested and wrote a list so I could be prepared and remember what to discuss / ask about trying.

The Dr we saw today was very straight to the point and very matter of fact, he wasn’t interested in hearing about how it was affecting sons life and pretty much shut us down, though I managed to get in how much time he’s had off school and the fact he starts exams next week, so hopefully the rest will have been included in the referral letter.

The Dr made him strip down so he could have a look at the full extent of the eczema then asked what treatments he was on currently and if he’d ever been given oral steroids and how long ago (its been a few months and the maximum they would prescribe was one tablet a day for up to 4 days at most). The Dr basically said that what he was on / had been given was useless for the severity consisting currently of just moisturisers / emollients and general strength antihistamines which were pointless.

Despite his lack of great bedside manner, we got a decent overall result.

• He has been put on significantly higher strength antihistamines (180mg twice a day vs. the previous 10mg once daily).

• He has been put on a 9 week course of oral steroids starting at two a day for 3 weeks then one a day for 6 weeks. He has to carry a health card stating he is steroid dependant should he be in an accident, stating what he’s on.

• Had it been a weekday appointment they would have taken bloods today but apparently they don’t do bloods on weekends! 🙄. So we have a phone number to call to make an appointment for them to be taken. The line is currently closed due to being a weekend so I’ve left a voicemail explaining he starts exams on Monday and that we will need to arrange a time around these rather than just being allocated a day / time so hopefully I’ll get a call back on Monday.

• Once the bloods are done the Dr will send out an appointment for approx. 4 weeks time to discuss further treatments in depth. Dr has said all being well he would like to put him onto either Methotrexate or Cyclosporin. He gave my son the QR codes to both drugs information and told him he needs to go away and research them both and decide for himself which he thinks he would prefer to try.

I’m not sure if anyone can offer any pros and cons as to why one would be better than another? Or opinions if you have tried both. From what I’ve read on Eczema UK Cyclosporin usually has pretty rapid effects within 1-2 weeks but is generally not given for more than 4 months with flair up on stopping not uncommon within quite a short time frame, whereas Methotrexate can take much longer to see results at 12-24 weeks but can potentially be continued for up to a year which could give him a longer overall period of relief? Obviously neither is a cure. Both seem to have pretty serious potential side effects. Personally I’m leaning more towards the Methotrexate because several of you have mentioned it here, I also don’t like that a listed potential side effect of Cyclosporin is hand tremors because he already suffers with Benign Essential Tremors. Whilst Methotrexate at it worse can affect the liver the liver is pretty hardy and good at self repair, I think Cyclosporin affects the kidneys more and they don’t repair themselves. But ultimately the decision will be his to make.

When we go back to discuss in a few weeks I will also ask about the options we didn’t get to discuss today. All in all it’s a good start and hopefully the steroids and antihistamines will at least provide the relief he needs to see him through his exams.

Thank you for the update. I hope he sees an improvement soon 💐

My son has bad eczema and it’s been rotten trying to get him help, GP just kept fobbing him off. I finally booked an appointment with a private dermatologist last year who prescribed pro topic and was shocked the GP hadn’t referred him to dermatology. He wrote to the GP who then referred him. He’s had patch test now and is allergic to something called Methylisothiazolinone which seems to be in a lot of cleaning products, things like conditioners, cleaning wipes, etc. It can take 3 months to start seeing improvement once that is avoided so we are hoping it will help. If it doesn’t I think we will look into food allergies next. Fingers crossed for you and your son x

When I was a little girl l used to have eczema all over my arms and legs especially the places that get warmer.
My Parents took me to a herbalist and what you have to do it’s put porridge oats into an old pair of tights and knot it. Then run a bath through the oats, submerge the skin into the oaty water and once out pat dry.
This took away the redness and the intense itching and it helped me so much.
I also grew out of it. Give it a try on one area first if you’re sceptical. Hope it works.

GPs just seem so useless with this kind of thing. It took a year of going back regularly and it getting progressively worse despite treatments to get someone willing to do a referral rather than just changing creams or telling us to use more and apply more frequently. It took me pretty much crying in an appointment just to get oral steroids for a few days when he was infected and an expedite letter. Despite this we’ve still waited over a year to actually see the NHS dermatologist.

We got pro-topic from the private dermatologist too whilst we waited on the NHS, sadly it didn’t help and it’s his whole body so a tube literally did a day and they would only prescribe two at a time! 🤦‍♀️. We couldn’t afford to go private again.

I’m going to ask about patch testing when we go back, from what I’ve read he needs to have a clear area to test which until its under some control he doesn’t have but I do think it would be useful to ensure the products he’s being prescribed aren’t just contributing to the issue.

I hope things improve for your son its such a miserable condition.

Thank you. Yes you need a clear area and also sometimes people can overreact and get false positives as well so it needs to be a bit stable.

My son is 19 so really down to him to make his own decisions now. Methotrexate has been mooted, but he’s going to see how he gets on once he’s eliminated the Methylisothiazolinone.

we were lucky I was able to afford the £300 or whatever it was for the private dermatologist as that’s what got the NHS process kicked off, there would probably have been no progress if I hadn’t :(

Well done for advocating for your son so well.
Usually I would be saying a lot anout withdrawal from oral steroids and side effects of methotrexate, but your son is young and about to do important exams.
I would do whatever it takes to get him though the next few month and then review.
I’m so sorry the derm didn’t consider how this is affecting him. Your son is doing really well to still be able to do his exams etc, you should both be very proud of yourselves - he’s lucky to have you xx

@Pearl97 Thank you.

I’m very aware of the issues with steroid withdrawal but by the time he comes off the steroids he should hopefully be a good 5 weeks into alternative treatment(s) which I’m really hoping will help to mitigate this to some extent.

The potential side effects of these immune suppressant drugs do concern me and I think its madness you have to try them before you can get a safer more targeted treatment like Dupixent, however the more serious ones seem to be classed as rare, he’s young and fit and will be monitored closely so I’m hoping all will be ok, and the several positive mentions by people on this thread in regards Methotrexate give me hope. I’ve been on equally serious drugs in terms of potential side effects through dermatology myself as a young adult with positive results so I know it can be ok. My biggest fear is that he’s just going to go rapidly regress at the end of it all and end up back at square one.

Right now though our focus is on getting him comfortably through his exams and hopefully achieving the grades he needs, as well as the start of college (a critical time for making new friends) and perhaps some relief over summer so he can finally enjoy spending some time with current friends and doing things he enjoys rather than spending the next 4 months between finishing exams and starting college hiding in his room feeling miserable as has been the case for the last 12 months.

I think you’re doing the right thing.
totally agree about dupixent - it’s all to do with costs.

I know this isn’t easy - you’re doing a great job xx

Have you looked into a red light machine.

lots of people find them very helpful.

I really hope your son gets some relief soon xx

Your poor son, I feel,so sorry for him. I have been there and just wanted to add on a positive personal note , Cyclosporine worked wonders for me.I hope it works out for him. It is most debilitating when not under control.

Has he seen the allergy clinic for testing?
My dd is under a consultant and they are doing immunotherapy desensitisation.

It looks like you've tried most things, but do you have a room filter?
We got rid of carpets in bedroom, not sure much difference that made.

Your poor son, keep pushing

He hasn’t been to an allergy clinic no, he had some blood allergy testing many years ago not related to this (the eczema is a relatively new thing) that said he was allergic to dust mites and cats.

At the start of the year we gutted and redecorated his bedroom, got all new furniture, new mattress and bedding all hypoallergenic with hypoallergenic covers, everything of his is washed at 60 degrees, due to creams bedding is changed every few days. He does have carpet but I cannot afford to replace it at this time but we do have a carpet cleaner and he cleans it with that a few times a year on top of hoovering fairly regularly and wet dusts when cleaning. I’ve stressed the importance of cleanliness to him but he’s a teenage boy and doesn’t often listen! He does have a vax air purifier that he uses too.

I just googled desensitisation immunotherapy, interesting! I’ll keep a note of that to ask about should they go down the allergy route.

Dust mites is one of the things in the immunotherapy for my dd. Also various pollens.

So I just thought I would post an update for anyone interested in how things are progressing.

Things aren’t going great! It’s been very stressful.

As per my last post, following what we thought was an ok appointment we were told to book and go for bloods to test liver & kidney function and then they would see us in 4 weeks time to discuss and start either Cyclosporin or Methotrexate and was prescribed oral steroids in the interim.

We had the bloods just a few days later and waited for the follow up appointment to come through which it didn’t do. I tried to chase it up but they refused to speak to me again because he is 16 and he needed to be on the call or to call first to give consent then I could call back. I explained he had already given this consent twice but apparently that hadn’t been recorded on his notes. DS rang again to be told by the person he spoke to that it was already on his notes! After much back and forth I finally managed to speak to the booking line who told me the medical secretary was shown to have logged on to book it on the same day the follow up was requested but then didn’t book anything so I would need to speak to them personally. The medical secretary tells me that the Dr hasn’t got any availability for the currently released months which is why she hasn’t booked anything, I explain isn’t good enough, it was supposed to be a 4 week follow up which had now been and gone. Eventually she manages to find me an appointment with a different Dr in two weeks time so I take that. Meanwhile he’s probably flunked half of his exams because the oral steroids haven’t helped and there were issues over being allowed to take his cream into the exams, this resulted in him being pulled out of some exams early by the school and being sent to first aid as he wasn’t coping and me being called and and asked to pick him or they sent him home.

Yesterday was the follow up appointment.

The Dr we saw was not the Dr we were told we would be seeing but she was lovely and very understanding. She got us to fill out a questionnaire about how much it affects DS daily life. We discussed the pros and cons of both drugs on offer and my worries and settled on Cyclosporin. They then took his blood pressure which she said was very low, not sure if we should be concerned about that!?

She then went to check the blood results before prescribing only to announce that the relevant bloods had not been carried out! The previous Dr had only requested a standard blood count where there should have been a fasting blood test and a virology blood test without which he cannot be given the prescription. As he needs to fast they say they can’t be done there and then and again we are given a number to call to book the blood appointment ourselves. We are told they will request the follow up appointment as urgent / asap however it can’t be booked until bloods are back and this could take a few weeks.

In the meantime she prescribes more antihistamines & creams. I wait at the hospital pharmacy for 30 mins only to be told that they don’t have them in stock & will call me when they come in.

The blood booking line is a voicemail service where you leave all your details and they call you back to arrange. We didn’t get a call back before the end of the day so that probably won’t be until next week now and will have to be coupled with collecting the prescription because the hospital isn’t local.

To say its been a bit of a shitshow and we are pretty fed up now is probably an understatement. We were really hoping that within a week or two from now he’d be starting to improve and now its unlikely he’ll even have started treatment in that time frame. He’s so sore and miserable its hard to deal with. It’s been such nice weather too and he just hides in his room wasting his time off.

I’m just praying the wait isn’t too long.

We’ve had a really rough few weeks with other things going on at home and this had been the icing on the cake.

Keep going with the pro topic. It works after about 2 months of using it all the time. I would put it on my hands then put cotton gloves on as it is really greasy and slimy. For some reason it has this long lead in time and then suddenly a massive improvement. I only need it for top ups now. Good Luck

Oh gosh, I was so hoping for a positive update. I’m so sorry this is happening to you. I can’t even believe they would ask how a teenager is coping with such sore skin. I’m in my 40’s and it’s hard to cope - teenagers shouldn’t have to be asked, it’s obvious how much it must affect him.

He is very lucky to have a mum like you. You shouldn’t have to fight to get help. The blood test form should say that they are testing for suitability for immunos. I hope they get it sorted quickly for you. We’re on your shoulder and here if we can help in any way. Have you thought again about UV therapy? He could presumably start that straight away? Might get some results for him quicker than the immunos? Xxx

Your poor son, it’s an horrendous condition and affects every aspect of their life.

My DD is now on the injections after trying so many things for years and just getting worse. She’d wake up with her eyelids crusted together, after eventually getting to sleep. Her body was covered.

I paid privately for allergy testing which helped a bit. The dermatologist said it was a waste of money.

Shes been on dupilumab for about a year and it’s honestly been life changing. The only side affect has been itchy watery eyes but she’s willing to put up with that as her skin is clear.

I would press for this OP. Best of luck.

@Pearl97 Thank you. There would still be a bit of a wait for Phototherapy, it also requires that you are free of all creams for at least 2 hours prior. At the moment he’s struggling to shower most days and can’t go more than 5 minutes without applying cream, he wouldn’t cope with having to go several hours without and a side effect in the start is it can dry you’re skin further so until its under some control we’ve kind of ruled that out right now.

@FrenchandSaunders Your daughter sounds exactly like my son. Unfortunately we’ve been told you can’t be prescribed dupilumab / dupixent until you have tried at least one immune suppressant first which is bonkers. They’ve said if he tolerates it well he can stay on the Cyclosporin for up to 18 months and if it starts to re-flair once he comes off it he can then try dupilumab.