11 year old, severe hand eczema, methotrexate, oral steroids

[acquiescence]

Wondering if anyone can share their experiences as I’m feeling so stressed about this. My 11 year old son has had eczema since being a toddler, had years of on and off flares, settled periods, tried numerous steroids (strong ones being betnovate and elocon), protropic and elidel, numerous emollients. His hands have got so bad over the past year and I think it is likely a topical steroid withdrawal situation where they just can’t heal. They frequently cut open and he is so so sad and sore. recently we tried some string steroid tape, this didn’t help.

We had a dermatology appointment yesterday, they are keen to try methotrexate. I am really worried about the side effects and its impact on his functioning. They also prescribed a short course of prednisolone (15mg for a week then tapering down for 2 more weeks). I’m now really worried about an awful rebound which seems inevitable. He needs a break however.

Over the summer we have seen some challenging behaviour, irritability and anger. I’m now wondering if the prolonged potent steroid use has got into his blood stream and caused behavioural changes.

I feel this has all been caused by steroid use, and just wish I could go back in time and never use any.

If anyone has experiences to share that would be really helpful. Please be gentle as I’m feeling awful about this, like it’s my fault. I feel so impacted by his moods and sadness and can’t think about much else. I’m not keen on an immunosuppressant but can’t see how he can go into his teenage years with his hands the state they are now.

My daughter has taken both medications and is still on the methotrexate. She is 9 and started when she was 5.

I remember feeling quite anxious about it, but it has honestly been fine. In fact it was amazing for the thing it was supposed to be treating.

His behaviour is way more likely to his age and hormones than the medication. He is on a low dose for a short period of time. But you can always chat to the Dr if you are concerned. I would personally try and avoid googling as there is a lot of misinformation on the internet and unless you are medically trained hard to interpret it.

I have noticed there are a lot of conspiracy theories about both medications, and and I’ve even had unsolicited comments from people which didn’t help my anxiety.

The main thing which makes me feel better is these drugs are both very old, very well understood and many many children take them and it’s ok.

Good luck!

Oh bless him. Severe eczema is a nightmare. The steroids are not the sort that would cause ‘roid rage. I expect it’s a combination of lack of sleep, constant pain and irritation plus normal pre teen stuff going on.
I have been on methotrexate for a few years. It does need careful monitoring but it’s been life changing for me.

I would take the methotrexate, but ask for a daily folic acid regime to go with it. Is it usually given as a weekly dose, a weekly dose of folic acid but daily folic acid is much better at minimising side effects. Methotrexate can be a game changer for this condition - but if it doesn't, you can stop and try other options such as biologics.

I am guessing the eczema is causing difficulties at school, writing can be really painful.

While steroids can have side effects, it is possible that the changes you are seeing are related to hormones, age and living with a long term condition that affects all aspects of life!

OP. I was diagnosed with chronic eczema in childhood. Please put 2 things out your head immediately

1. Topical steroid withdrawal. I have used strong topical steroid cream on and off for years. Never had withdrawal, and at 55 my skin is not thinned or damaged. I do not believe in it and think the reaction in these cases is the condition flaring up after stopping the creams. I have never had a problem with tapering off after flares.

1. The cream getting into his system and causing him to be angry and irritable.If he is taking any kind of antihistamine, that could be causing the irritability. It has that affect on me. He may not be sleeping well.

Take the derm's advise and try the recommended treatment.

I will try to keep this short and spare you the long backstory. Throughout my life, I have managed my flare ups which often affected my hands. I used steroid creams for this when needed. I have never been afraid to use them - the alternative for me is far, far worse, painful and mentally draining. There is a lot of nonsense online about topical steroid cream.

I had food allergy testing when I was about 8, but the list was so extensive that I agreed with my mum that she could not withdraw all of those foods from my diet.

I was twice hospitalised with eczema and it made things worse. My parents discharged me and took us to a hot country My skin cleared up in 2 weeks and from ages 7-13, it was clear.

Swimming in a chlorinated or salt water pool benefits my skin hugely.

I have cats but they have short hair.

More recently, I figured out that I am Coeliac. I have a massive eruption of the most insanely itching skin. The condition is called Dermatitis Herpetiformis. A gluten free diet (along with a few other dietary changes) have cured it.

It may be worth having some allergy testing done and maybe trialing some dietary changes. I started with gluten and knew within 24 hours that it was that causing the problem, but has that not had an effect, I was then going to try eliminating lactose.

In my childhood, my skin problems were a far more stressful for my parents than they were for me.

I have been told to take folic acid the day before and also the day after I take the methotrexate.

So sorry, Op, sounds grim for you and him.
Not a doctor and not against medications at all, but I had friend who had excema all her young life until her Mum took her to see an alternative doctor of some kind (naturopath?) who put her on a protocol that included evening primrose oil capsules. It was a total game changer. Wishing you luck with this.

I wonder if you could ask dermatologist about light therapy? My daughter has just been referred.

Poor thing. I had (I presume) similar skin to your son as a child / teen. And I now take methotrexate (and sometimes oral steroid courses) as an adult for rheumatoid arthritis, so I empathise with him!

The behaviour is, as others have probably said, due to hormones / pain / lack of sleep / feeling different. It won't be from the topical steroids. You might experience some short term emotional issues from the oral steroids though. They don't make me feel angry, but they do make me feel WIRED and so bloody hungry. Bear with him on this.

My skin is also fine now, no side effects from all the years of topical steroids .

Not exactly like your situation but my ds had severe eczema and the thing that started improving it was taking Vit D daily.

my sisters was so bad she was hospitalised a few times in childhood. What they say is never wash you hands - use the tub of emsulsiying ointment (those large tubs and be constantly using that but need to get it under control first. The obvious - be v careful with what detergent you use. She was on a lot of drugs and no long term side effects but the main thing was get it under control and then wean yourself off them

Thank you SO much for these replies, I really appreciate all of them and feel less stressed about the whole thing.

A friend once told me that people don’t post online for advice when things are going well with their health and I try to remember this. I will stop googling.

Thank you. His vit D was a little low at his last bloods and I’ve been giving a supplement but not consistory, will get on it with this.

This hasn’t been mentioned but I’m aware of it. Hope it helps your daughter. I will keep it in mind.

Thanks for sharing your story. Good tip about antihistamines, they make me irritable so this may well be the case.

He has been referred for patch testing but there is a wait.

We are off to Greece this weekend and the hotel has saltwater pools, this is why we have the oral steroids to try to give him a break. I was so anxious about the salt water but maybe it might help, we will see.

Thank you. I believe the biologics are the next step, but the NICE guidance currently states metho or similar must be trialled first.

good advice re folic acid.

This is just what I needed to hear today 💙 thank you. I’m glad your daughter is doing well with her condition.