Eczema! what am I missing?

[ThisOneIsMine]

Hi,

I'm really struggling to manage my eczema currently. I have had eczema all my life. about 6 years ago, it got so bad all over my body that it was infected badly, and nothing shifted it. I was given phototherapy, and that cleared it up. Since then, iv been lucky, and I haven't had a flare-up until I had my baby 7 months ago! I didn't have a flare-up after my first, so I'm not sure if it's connected.

It's only my right hand and arm that affected. And it's now like little blisters, much like polyhydramnios, but all over my arm all the way down to my elbow in between my fingers backs of hands. tiny little blisters that drive you insane needing to be itched! And then burst and weep super painful. This flare-up keeps getting infected. When it's bad, i can't use my hand. i can't even grasp my toothbrush to brush my teeth properly. showering is torture even with gloves on! I'm on my 5th lot of antibiotics in 7 months for it, and whilst the gp is happy to carry that on, I'm not.
I'm stuck in a cycle of itch, blister, weepy sores, clear for a few days, blister again. The last lot of sores haven't finished healing, and new blisters are coming. (Can see them under the skin before they come out)

Iv tried;
Oat baths
All the moisturisers I own, including prescribed ones
Betnavate
Permanganate soaks
Oilatum
Wet wrapping with viscopaste
Bandaging it up
Leaving it to dry
2 different antibiotics creams from a Cypriot chemist.

I'm keeping nails short, but I wake up rubbing my hands together, or when I dry hands, I end up using the tea towel to rub the itch in between my fingers. And u know as I'm doing it, I'll regret it, and kts going to be sore, but I just can't stop 😔

What am I missing? What else can I try?

I'm going to ask for a dermatology referral, but if and when I see a dermatologist, what should I be asking or asking for? I'm curious why it's only affecting my right hand arm and how it has changed my pinky nail. (All pitted and brittle since the first flare up)

Sorry for the essay! Thanks in advance for any advice.

The pictures are as good as they get before the next round of blisters !

You’ve got my upmost sympathy - I’ve had several bouts of Pompholyx / dyshydriotic eczema (as well as lifelong atopic eczema) and it’s a burning itch unlike anything I’ve ever felt. I remember when it was at its worst, I seriously considered pouring boiling water over my hands to stop the itch (I didn’t thankfully). My nails were very pitted for ages but are now fine.

Some things I found helped the itch and broke the cycle of weeping / infection a little:

• keeping my hands as cold as I could - ice packs, holding ice cubes
• taking strong antihistamines, includes ones to help me sleep
• lathering on Epaderm under cotton gloves to sleep - when it was really bad I had to go for gloves that I couldn’t easily take off (they sell them for patients who might self harm)
• a steroid cream with some anti-fungal in it too - I’m not sure why but this really helped

Things that helped stop the blisters forming:

• avoiding all soap / harsh chemicals - I used emulsifying ointment as soap for months, my DH washed my hair for me
• wearing cotton gloves under non-latex gloves if I needed to get my hands dirty / wet / whilst cooking and cleaning
• no jewellery on for several months

My triggers for outbreaks:

• Nickel allergy - is there anything you mainly hold with your right hand? Phone case? A ring you wear?
• Stress - if I have an intense period of stress, Pompholyx will appear approx. 3-4 days later (weirdly)
• Sweat - I get them on my feet if my feet get too hot or sweaty in shoes, I wear wicking socks and breathable shoes
• Friction - if I am doing something that involves lots of friction on my hands I’ll come up with the blisters quite quickly

What Id be asking / asking for at the dermatologist:

• Allergy testing
• UV therapy
• Would a course of oral steroids help?
• Would a course of alitretinoin be appropriate? (Although won’t be possible if you’re breasfeeding)

I feel your pain, I also struggle with it.

Other things I use to manage mine:

• double base cream: you can buy over the counter at a pharmacy/boots (use as a moisturiser/whenever it’s itchy - literally all the time don’t let your skin dry out.)
• Stronger steroid cream (I think it’s Elocon but need to check) this literally gets rid of all those acid bubbles and flare ups you are speaking about but it’s not a great longer term solution as thins the skin
• gladskin - have to order this online and quite expensive but if you have the budget worth a try
• Ive tried getting a water filter as I think hard water makes mine worse
• dairy is meant to be a trigger (I’m not good at cutting this out)
• I don’t think tomatos help mine… might just be the acidic nature)
• latex free washing up gloves - not sure if that’s just me.

mine always comes back though so no permanent solutions!

Thank you!
Yes, pompholyx, not polyhydramnios, auto correct at its finest! 🤦🏻‍♀️

The burning itch is exactly it. it's horrible and so intense. You know you're going to regret it, but cabt help yourself. Interesting you say about boiling water. I have run my hands under the hot tap before now 😅 anything to stop the itch!

I keep my creams in the fridge but never thought of holding ice / ice packs. I'll give that a go. Thank you and look into those gloves, I often wake up to my cotton ones in the bed / on the floor.

I don't wear any jewellery, but I'm not sure about the Nickle allergy. No phone case. There's nothing I can put my finger on. May stay a diary.

Thank you for dermatologist pointers

I am breastfeeding, currently. I need to look into the antihistamines properly and the over the counter ones I have not been able to have because of breastfeeding. I'd imagine there will be at least one somewhere that is breastfeeding safe.

I have similar triggers, stress, cleaning, and friction. But I avoid these. If any chemicals are needed, DH does it. I don't think I have been particularly stressed of late. The baby is sleeping longer stretches, so I'm even sleeping better!

Thanks again!

Thank you!

I will look into those creams you suggested.

I meant to put in my OP that I am currently diary free, I'm still breastfeeding my baby, and he has a cows milk allergy, so I'm dairy free for him. And honestly, day 2 of giving up diary, my skin was the best it's ever been, I thought that was all sussed. Then, by the end of the week, it had flared back up again.

Yeah, I have heard tomatoes for some people. Lemon, and lemon flavoured water, etc, for me. Fun fact I learned that having photo therapy is to avoid anything citrus. Citrus makes you more sensitive to the sun and more Likley to burn.

Thanks again both it's nice to have some pointers from people who understand what you're going through.

Could you have phototherapy again?

Are you having to wash your hands much more, or handle cotton fabric and washing more often due to having a newborn? My hands get so sore just folding laundry. The lint from cotton is an irritant. if this might be aggravating it, could someone else do the laundry for you for a few months until it's calmed down.

Can you take a non-drowsy antihistamine to reduce the itching?

Had a similar journey as you OP. Only thing that helped infected or really bad areas on my face was Elidel, a non steroid cream prescribed by an NHS dermatologist.

Betnovate for my body (arms and legs) but only for a week or so to settle down flare ups then only moisturiser.

Phototherapy, I would ask for another course of it.

I also recently learned that fruits such as grapes etc are now really not tolerated by my eczema anymore. New food triggers can happen at any time so keep an eye on what you are eating.

Could it be Dermatitis Herpetiformis, I.e., celia rash? It is generally symmetrical, but it also consists of small super itchy blisters as you describe.

If you have any other symptoms consistent with Celiac (or non-celiac gluten intolerance) it might be worth requesting a test.

*Coeliac rash

I know you are dairy free but have you replaced dairy with soya or are you eating a lot of egg? I had eczema all over until I gave up dairy and egg (to continue breastfeeding my daughter who is dairy/egg allergic) and my eczema disappeared, after 39 years of it. The only thing I still get is the hellishly itchy blisters on my hands if I touch raw fruit/vegetables or dust.

I ended up wearing something like these for sleeping for a while - yes they look ridiculous and over the top. But it meant my hands could breath somewhat and I couldn’t scratch or rub my hands / elsewhere in my sleep. It had got to the point before wearing these that I would wake up with my hands scratched or rubbed completely raw several times a night. I could get out of them using my mouth when conscious but asleep I had no chance.

https://www.medicalsupplies.co.uk/protect-coolmesh-medical-mittens.html

And yes I’d chat to a pharmacist about potentially suitable antihistamines, they did help a bit, especially with getting to sleep (although I realise you might not be able to conk out the same way as I could
without DC)

I remembered another cream I found helpful - Dermol 500. It’s an emollient with an anti-microbial which helPed me break the infection cycle I was in.

Cold water helps me as sweat triggers. Being cold helps and minimal clothing. Less eczema all over without gluten and without metal belt buckle and covered bra hooks. Mine was awful when breastfeeding but better when pregnant

I use Anthisan or any antihistamine cream for the itching. It is not recommended for eczema but my dermatologist said it wouldn’t do any harm, although it wasn’t helping the reason I got eczema (which no-one seemed very sure about anyway). It stops the itching instantly, unlike oral antihistamines, which take a while to work, which means the blisters are less likely to burst and get infected. I would also get allergy tests - I am allergic to E45 cream and aqueous cream, which was one of the reasons my eczema wasn’t getting any better.

@totalOverhaul
I don't think it's the washing as it's only the one hand/ although a break from folding laundry would be lovely, so I may have to suggest that one to DH!
To those who suggested another round of phototherapy, my health board no longer offers it, I did ask recently about it.

@sfnets
Elidnel is another one I can ask the dermatologist about. Thank you! Interesting, you mentioned grapes. I have been eating a lot of grapes recently - I'll cut them out for a week or 2 see what happens.

@anyonebut
I had a Google, but the rash is the only symptom I have. Thank you, though :)

@Angelinablack
Replaced diary with oat milk as lo is also allergic to soya, I do eat a lot of eggs, another one to cut out and slowly re-introduce

@cheeryassam
Thank you! I have ordered some, If they work, they work! Night time is always the worst for scratching.
Aah, Dermal 500, that brings back memories i used to have all the time as a teenager. I can't remember why they took it away. But I will ask the gp tomorrow. Pharmacy for antihistamines is also on the to-do list for tomorrow.

@ohthatsabitshit
Interesting that yours was worse when breastfeeding. Did it get better on its own when you stopped?

@akiddleetivy2woodenchu
I'll look into the antihistamine cream that sounds ideal. A quick Google says I can use that whole breastfeeding, too. I am also allergic to e45 cream! Iv never met anyone else who is.

Thank you so much everyone, you have given me lots to look into reminded me to keep it cold, and it looks like allergy testing is they way to go with the dermatologist, too

Ask GP for dermovate

Yes, I ate loads of frozen grapes and had an awful flare up just 2 weeks ago. I always knew citrus fruits did it but didn't think about grapes but then read this 'grapes are a “triple threat” as they are a very rich source of three itch-promoting chemicals called salicylates, amines and monosodium glutamate (MSG) which are known to worsen eczema'

Eczema really is awful and very misunderstood. If I had a pound for every recommendation of E45 or Aqueous!
The only thing which has ever worked for me is acupuncture. Two huge flare ups in adulthood and both resolved (first flare up 15 yrs ago, second three) with about 2/3 months of weekly visits. Not cheap but then again neither were the amount of prescriptions and creams I would try.
I hope you find a solution that works for you soon.

I second dermovate! I know it’s a very potent steroid but it’s the only one that gets my pompholyx under control. I’m in the midst of a flare up and have tried my daughter’s betnovate but even that doesn’t stop it.

One of my kids had the most horrendous eczema as a kid. Wet wrapped with steroids head to toe. Anyway turned out he was allergic to loads of stuff I was eating while I breastfed him. He is hyper allergic to several things now and carries an EpiPen.

We tried everything we could under NHS but it only got under control when his diet was under control and we eliminated a load of stuff.

Agree it's very misunderstood.

I had a dermatologist consult for my pomphlox - he prescribed Protopic ointment - it's non steroid but has some side effects (flakey skin and some sensitivity) but does get mine under control

I find tomato plants really set me off - avoiding them in all forms now!

And I also do the tea towel trick when it's really bad, and running my hands under hot water

Nursem creams also help when I'm back in maintain mode - lots on eBay

Just reading your thread I suffer with this also you may have found something to help now but I found fucibet is good (prescriptions only) it kills off the staph within the blisters and reduces the swelling and itchiness around it all. I have also been given dermovate (perscription) which is a strong steroid and that's like a miracle. When I was breastfeeding I was perscribed mometasone but I have found the other 2 so much more effective since stopping breastfeeding. I was using mometasone for about 2 years as it never properly got rid of the issue I was always still uncomfortable. I only use dermol to wash body/hands and to wash my hair cotton gloves inside marigolds. I hope you are doing better now and you have it under control. GPS are not really great with all I got the fucibet after paying to see dermatologist and the dermovate from consultant dermatologist (finally refers nhs), I am also receiving phototherapy twice a week so who knows

@Akiddleetivy2woodenchu hey just wondering what allergy testing did u do go find u were allergies to e45 etc ? Was it private or nhs ?

thanks