Been prescribed protopic for my 2 year old and it’s making him want to rip his own skin off

[AngeloMysterioso]

My toddler has severe eczema and was seen by a dermatologist last March. It has come back with a vengeance and after several GP appointments where they just threw one steroid/emollient after another at the problem, I was told I could get a dermatology referral.

This has come in the form of an app- I uploaded a few photos of the worst patches and someone has prescribed Protopic, to use on weekdays with eumovate ointment at the weekends. Oh, and we’ve been given a face to face appointment… in August.

We put it on him for the first time before bed, and fuck me… my poor little boy, who has only napped for half an hour today, is still awake three hours later, scratching his entire body. We’ve just had to dunk him in the bath and rinse it all off and he’s still scratching. His skin is raw.

Someone please tell me this isn’t the only option left to us?! Is there anything we can do to stop the itching? He already has different antihistamines and they seem to have no effect at all. We’re desperate.

Oh God I totally feel your pain. DD was like this, it's awful.

We have used to good effect:

Betaderm
Desonide
Dermasmoothe

We also used protopic which was fine.

Are you moisturizing lots?

There are millions of creams out there, but honestly the best I've found apart from the above are Vaseline and nivea blue tub.

It's so tough

You can also buy little cotton gloves

And cut his nails really short

Hi, You may have tried this already, but is an allergy test possible? I knew someone whose daughter was allergic to cows milk. It’s surprising what foods milk powder is added to. I think they switched her over to goats’ milk and it was a miraculous transformation.

Putting oatmeal in a permeable bag and running tap water through it for bathing (having a bath) is supposed to have a soothing effect on skin also (obviously there may be people for whom this is not suitable of course).

Hope your DC feels better soon.

There are two types of topical calcineuron inhibitors (TCIs), Protopic ointment (tacrolimus) for treating moderate to severe eczema, and Elidel cream (pimecrolimus) for mild to moderate eczema.

I'd have expected a toddler to have been started on Elidel (the less strong one) first, and for an initial patch test to have been advised. It can really sting when first applied so goodness knows what the Protopic feels like for two year old.

It's best to put the emollient on afterwards, and then a Vaseline-type ointment over that, if you're layering up. Keep him well away from sunlight.

Just ... massive sympathies. Meanwhile, anti-histamines such as Piriton syrup, and Calpol

Please look up topical steroid addiction/withdrawal and the support groups on facebook. Unfortunately using steroid creams for severe eczema can lead to horrible symptoms, including extreme itch and red akin that are very similar to eczema. Protopic can also can addiction and withdrawal.

I understand the severe itch. You did the right thing to wash it off. A Dead Sea salt bath can sooth and prevent infection if the skin is broken, moisturise a lot (without steroids/protopic) unless it causes the skin to become inflamed and itchy. Please look up the topical steroid withdrawal groups on fb. It's worth knowing what the pit falls to avoid are.

It’s Tacrolimus 0.1% ointment. We ended up washing it off him last night but reapplied this morning (we figured it would be easier to distract him from the itch during the day).

There’s nothing in the review on the app that says how much I should be using and the pharmacist didn’t say anything about it either.

Thanks for the tips re emollients. He has piriton throughout the day and benadryl at bedtime, for all the good it does!

I’m going to request it through the GP but will go private if to no avail. I’m not sure it’s an allergy though as his diet has always been pretty consistent whereas the eczema seems to be seasonal- or at least much, much worse in the winter months! We are planning to give him soya milk instead of whole cows milk at bedtime to see if that makes a difference.

We only use Aveeno stuff in the bath, including their powdered oat sachets. He’s also got some Epimax oatmeal emollient which we slap on at regular intervals.

@AngeloMysterioso 100% try for an allergy test. DD developed horrific eczema in her late teens, which almost put her in hospital. We paid for private testing, not a single foodstuff came up but she's off the scale allergic to dust mites. It's a bugger to manage environmentally and medicinally but she owns her condition and does all she can to keep herself well. (Few 20 somethings would live in such a flat as clean has hers!). She is hoping to be put forward for Dupixent.

Just to add, DD is always better in hot, dry environments and always flares in the winter

Just a thought: there's a lower strength Tacrolimus (0.03%) for paediatric use that has had some good results for infants and children who don't tolerate the stronger version of Pimecrolimus.

I'm actually on Pimecrolimus 1% myself so know the post-application 'burn' very well indeed. That's the signal to apply emollient, and a bit later some petroleum jelly on top.

I've had psoriasis for decades but I'm new to this eczema lark. Luckily I'm under the care of a very good dermatologist already. The last GP I saw was completely out of their depth unfortunately.

OP I would still not rule out the allergy line. My DS had horrific eczema from being 5 months and it only got better once we realised he was allergic to eggs and eliminated them from his diet. He's also allergic to dust mites, which exacerbate his skin issues.

No amount of topical stuff would help, he had to heal from the inside first. He still has a bit of eczema now and it does flare seasonally but he's 99.9% improved.

Ah its so hard isnt it? My 1 year old had extremely itchy eczema. Her skin got infected and just disintegrated. I paid £200 for a private dermatology consult with a paediatric/derm consultant and it was worth every penny. If it is within your means I would 100% recommend. We had been prescribed emmolients and topical steroids by the GP but hadn't been shown how to use them properly. We were given a plan that actually worked. she wrote to my GP so all prescriptions were then issued by the GP so really the consult and follow up were one off costs. I wanted to go down the allergy route but feel it is a bit of a rabbit hole. Tbings are so much better now - we manage small flares and haven't had the widespread red itchy skin that we previously had.
I have also done a lot of reading into how the itch is driven by bacteria and think this is worthy of understanding. www.theguardian.com/society/2023/nov/22/scientists-raise-hopes-of-cure-for-eczema-itchiness-with-study-of-skin-bacteria

Thanks @nomeslice - that's an interesting article.

Another vote for oats in the bath here.

We used to put it in a sock on the tap and let the water run through it as it goes into the bath. It helped my DD with itching

Have you tried wild and wood? We had steroid creams after steroid creams, emolients, diprobase, you name it, from the doctors. Nothing worked. I saw wild and wood on instagram and thought we had nothing to lose and ordered a "help" package. The body balm was like a miracle cream. It's the only thing that's ever helped my DD in 11 years

Oh bless him, I too have used Protopic (as an adult) and the burning & urge to literally claw at your skin is awful …. But I did get genuinely miraculous results in a short time frame from it.

Like the PP I’ve quoted, emollient cream (the proper lardy stuff) over the top gave the best relief.

The burning sensation does pass after a little while but obviously thats impossible to explain to a toddler.

I am so sorry OP, this sounds really tough. My son only had it relatively mildly when younger. Oats in the bath was good but a family member who suffers really badly taught me to put them in an old pair of tights, tie it up and it would make a really gentle oaty sponge and less mess! Also, I follow this lady on Instagram, she hand makes creams and has amazing reviews, I will try and attach one I saw recently. I have never bought her creams but apparently they sell out in minutes!

Damn, I can't add photos but she is Zoebeebeauty :)

@AngeloMysterioso so sorry to hear this, it’s so tricky.
Following on from @nomeslice article about staph on the skin, have you tried Milton’s baths? Can be really helpful to get things under control.
I thought for decades that my eczema was better in the heat/summer but it turns out it was actually better when I was swimming frequently (and the chlorine acting like a Milton’s bath).
https://www.southtees.nhs.uk/resources/bleach-baths-for-eczema/

Another warning from me to add to @abeeabeeisafterme about topical steroid withdrawal. Please read up on this. We started on steroid creams when my daughter was a toddler. She ended up doing what usually happens, going up the steroid ladder, stronger steroids, given protopic, ended up being offered oral immunosuppressants. At the age of 17 she ended up going through topical steroid withdrawal which has been horrendous. Protopic can be even worse for withdrawal- luckily she found it made her skin burn and then led to eczema herpeticum and therefore hardly used it (because it is an immunosuppressant, this is a common side effect if they are have ever had or are exposed to cold sores). I also subsequently found out that protopic has a "black box" warning on it in the US due to links to cancer. Anyway, if I was doing it all again, I would avoid the thick heavy emollients/ointments and use a light cream only eg Cetraben. I would even try without any creams-sometimes the body needs to learn to make its own moisture. I would bathe as little as possible (no more than once a week) and would use Dead Sea salts. Anecdotally, people used to grow out of childhood eczema and it is thought this could be because doctors weren't quick to prescribe steroids. Now, they prescribe steroids/protopic at the drop of a hat and instead of growing out of childhood eczema, they often end up with severe eczema in their teens. Wishing you all the best

We were given a plan that actually worked.

^
Nome slice
Can you share the plan?

I'm here after searching for other people who have noticed intense itching after applying protopic. It's not straight away for my 2 year old, but 2-3 hours later he wakrs up and is POSESSED. Worst thing I've ever seen. He scratches and flings him self about as though he's in pain, can't get much sense out of him and initially thought night terrors but he seems so awake. I'm connecting the dots and I think it's the protopic. We basically have to wait it out and just be there as nothing helps at the time and I'm not sure I can see him like this for much longer.

Have you had any changes since posting OP?

On another note, I recently learnt that giving piriton for eczema is akin to giving a shot of vodka - might knock them out but has no impact on itching because eczema itch isn't histamine driven. Long term use of piriton isn't great in adults as it impacts REM sleep.

What strength have you been given, @Snowycaroline? Protopic 0.03 % or Protopic 0.1 % ointment?

And yes, the intense itching and burning can take a few hours to appear. And then, bang. Even a hardened adult skin patient like me had to drop a strength to be able to get any sleep.

Sympathies to you and your little boy

We have protopic prescribed for DS, we usually apply at bedtime (due to warnings about sun exposure) and then he wears scratch sleeves at night so can't scratch himself.

@AutumnCrow we have only used the 0.03% to date but saw an allergist yesterday who has prescribed the 0.1% as well as elidel. I think I'm going to call dermatology and let them know his reaction to the protopic.

I wish I'd thought about it before the allergy specialist appointment but it's only since that I've connected the dots.