Hand eczema/pompholyx . Help! Trying to wean off steroid but keep reflaring!

[Girlwithproblems1]

Hi was wondering if anyone can give any advice . I’ve had this on my ring finger for a while and didn’t think anything of it . Suddenly just blew up and within 2/3 weeks my full finger was covered, the old patch inside my wrist came back red and big and I was getting an itchy sensation on my scalp and my body when it got bad !

I waited 3/4 weeks then Dr prescribed eumovate and said it was pompholyx eczema I used this for 14 days which didn’t clear it but it came down a lot. I was advised to take a break. So I did for about 2 weeks then I used it again for 4 weeks. Again it didn’t clear it but bought it down abit .

Dr then advised another 2 week break and re use a stronger steroid (but my pharmacy didn’t have it in stock). So instead I used eumovate again for 14 days . Again same thing, cleared up a lot but not fully and patches of the rash had
spread to other fingers and on my hand more even through the steroid use.

the steroid calmed it down but every time I went off it slowly got worse.

Since then I have been weaning off, it has been 1 month and I’m currently doing 4 days off and 1 day eumovate steroid once . But I am struggling !!!

The patches of the rash on my hand are getting bigger and the one that’s moved to a new finger is in particular itchy. I have the usual burning sensation, red, itchy and then on the flip side dry if not covered in emollients etc .

I wear no hand Jewellry etc. I am sometimes careful with what I eat now (as I thought maybe tomato triggered it). I think this originated from over washing hands with hand wash and having my hands wet all the time (I have 2 toddlers) and food with spices touching my finger/that area of the rash.

However for months I have not touched food with this hand, wear cotton gloves underneath my disposable for doing the washing up. Make sure cleaning producers aren’t on my hand . I use soap bar now. And I bought double base hand wash to try. I use a couple natural ointments and mainly hydromol ointmemt
especially as I wean off I feel like I need all the help I can get !!

Chucked away some of my furry fluffy jumpers (as not sure what was irritating my hand/ arm when I was worse ) . I wear cotton underneath as a layer now. I know heat and stress makes it worse or if I feel hot . Have a referral to dermatology for patch testing .

Can somone please tell me is my eczema not healing or is it my body just reacting to me taking away steroid ?

Evryone I speak to is advising I stay off the steroid if I can . And that it is my skin reacting to not using it .

tonight is my steroid night . I’ve put it on my patches but I literally want to scratch the hell out of my fingers right now !

My worry is the way it’s going . Am I just weaning off to then just go back on a steroid ?? So confused !!!!!!!!!!! And finding it hard especially between the chores with the kids 😞

I get this, really strong steroid cream applied thickly and left to soak in overnight usually knocks it back. Put on a thick layer then plastic gloves to sleep in. Daktarin gold also works. Change of temp triggers it for me, hot to cold etc, so cold weather & central heating don't help!

I get itchy, skin crawling, scaly, dry patches of eczema on my hand if I eat a lot of foods with additives in - namely emulsifiers and preservatives. Crisps, ketchup, ready sauces - that kind of thing.
Have you tried a low additive diet?I don't have to cut it totally - but my hand gets bad for a few weeks if I forget - Christmas was a bit of a killer - just healing now. I use hydrocortisone sparingly and E45. Gloves for washing up, cleaning and polishing.

You mention the burning hot itch - are you sure it is not a side effect of steroid use? I had similar on my feet and it was bloody agony with exactly what you describe as symptoms, and just kept getting worse. Someone on here recommended that I read the leaflet in the box about the side effects of overuse of the cream - almost exactly the same symptoms as the rash itself!

I stopped using the steroid and battled through for a week with ice packs (frozen peas) when it was really itchy and dermol cream to soothe it and it went down a huge amount. It wasn't gone within a week, but it was much more bearable. It took three weeks total to fade almost completely.

Now if I get the early signs of a flare, I use the cream but only once a day and only for a week and that usually takes it back to almost healed. Then I use it once every other day for up to another week, then I leave it.

I've had this problem since I was 7 (so 40 years) and this is the best it has ever been - almost totally gone. I hate the thought that all this time I might have been unconsciously causing it by overusing the cream.

Dermol is a brilliant bridge between medicated and non- medicated cream as it is anti-microbial but non-steroidal so is soothing and also knocks any v small fungal/bacterial action on the head. If it were a serious infection or fungus it wouldn't cut the mustard, but if it's just eczematous, it stops it getting cross-contaminated with something else.

@MightyGoldBear
ahhh I really hope over time ur stress and trauma is seen to and hope it gets better for u. I can’t imagine with 3 ! I have 2 and can just about !!! Yes the nails, the bath times, picking them up etc ugh getting fruits and constant snacks etc ready for them. I use gloves most the time but it’s like how much u gonna wear a glove!

I think mine is just something else and it just hasn’t gone down from the original . I can’t pin point .

but I have seen the slightest bit of stress can make it feel awful, u can feel it that very moment ! Same as heat .

so I really feel for u and hear what ur saying 😣

@SuperGreens does urs come back often ? I’m in that predicament do I go back to gp for a stronger steroid or carry on weaning off. It is hard work so it’s like ugh don’t want to back track

@specialsauce i get the skin crawling itch sensation too when my flare up becomes worse . I haven’t no. What would I specifically be looking for additive wise ? Any e numbers and other things right ? I guess maybe my diet overall needs to get cleaner .

it’s quite hard I eat spiced food as my background is Asian and I always have . And at the moment it’s not always hot spicy food as I’m not 100 % sure if that can make it worse . So I’ve laid of the chillis abit recently

I don't find it especially strong smelling, but my sense of smell is notoriously poor! It depends on how sensitive your nose is.

@ElizabethVonArnim I might have to get some dermal cream .

well before I started the steroid during the original flare as it was progressing my finger was getting more red and itchy and kind of swelling up. So at the moment I think it’s the eczema not TSW.

but do u find ur in a cycle of using the steroid ?
mine I’ve been weaning off for about 5 weeks now . And sometimes I feel like ok maybe my symptoms feel better compared to the original flare up. But it has spread and doesn’t seem to be stopping .

Any natural stuff anyones used that helps?

I have tried chamomile tea bags when it’s been red hot itchy to take my mind of it .
I’ve tried coconut oil sometimes as heard it’s anti fungal and bacterial properties (don’t like the feel of it not the same as hydromol lol)

im yet to try oat baths. I bought the Muslin bags but haven’t got round to it yet

and tried some Hannah stiltoe products which seem good . But u really probabaly have to stick to it to see results . Sometimes when it’s red and itchy I just wana put natural chamomile on then slap some hydromol on after !

@Girlwithproblems1
The worst culprits for me seem to be:
Monosodium glutamate
maltodextrin
carboxymethycellulose (CMC)
polysorbate 80
all emulsifiers
all artificial sweeteners

I've gone organic on the things I eat most like peanut butter and mayonnaise. Unfortunately takeaways (any at all!) trigger mine badly so I just eat them once every couple of weeks.

I've basically gone back to real food: real butter, real cheese, rereal cream, simple oil like olive or ghee for cooking. Organic when it seems cost effective / when I can afford it.

This seems to keep my eczema at bay really well.

That's when I've been known to stand with my hands under the running hot water tap.... totally not the right thing to do, but at that point, I don't care 😔

Have you tried a Piriton tablet or 2?

But the RELIEF 😱

from popping the bulg of the blustered skin…..omg

i get this on the soles of my feet mostly and the blisters form under hard skin sometimes, which is excruciating.

I take antihistamine fir itching

Have you tried zinc? It's really natural. You can buy creams with it or mix into a paste from powder.

I've had pompholyx on my feet, dermatitis on my hands, peri oral on my face followed by steroid withdrawal rash!

I now try and stick to avene ciclafate or the zinc. I'm am very sensitive to nickel. I'd like to to allergy testing as I also sneeze alot.

Yes I'm on quite a lot of fexafenadine, but I still get it from time to time. As with others, what I eat and stress definitely has an impact.

Lifeling eczema person here. I would cease all moisturisers and soap, use salt in your bath. Use the steroid only for a week (especially overnight). See if that helps then try Aveeno to moisturise and wean off the steroid.

I’m allergic to all those emollients the GPs prescribe. Aveeno I find is good but it’s a process of elimination. Hence start with eliminating it all except the steroid for now. I have done steroid withdrawal before many times, you just have to wean off slowly. The alternative (ie not using steroids) for me has always been worse.

Perioral dermatitis is a kind of red bumpy area around your mouth, the bumps were very similar to the pompholyx I'd had before on my fingers. Doxycycline is a kind of antibiotic that is prescribed for skin conditions.

@stargirl1701 no I haven’t . I bout the citerizine one but still haven’t had it. I thought il have it when I’m at my wits end. I breastfeed my little one aswell. So trying to stay off that type of stuff as much as possible

@Mynewnameis I sneeze a lot too. That’s why I was thinking of private allergy testing. The one I looked at was only food though, even though it was a very extensive list !

do u use zinc cream ? If so which one ? And do u just put the avene everywhere as a lotion or only where affected ?

how long did u use ur steroids ? Or is this through ur lifetime u mean ?

I did start taking zinc supplements recently just about 2’months ago .

Piriton is given to babies with allergies from 6 months +

How old is your baby?

I had these exact symptoms for yearsssss and eventually it got so maddening that I excluded things from my washing regime and diet until I figured out it was caused by gluten. I gave up gluten and haven't had it since.

@KittySmith1986
hi so did u basically use it for a week then wean off every time ?
so u regularly do this if u reflare ?

also u know that tight dry feeling u get, especially in the morning if it hasn’t been moisturised what did u use - the aveeno alongside the steroid ?

mums it a certain ingredient ur allergic to in the emollients ?

tbf I was using 50:50 ointment as that’s what I had home from my kids old stash . I was slathering it on during my first flare even though it was still stinging ! Hydromol I just bought myself and seems the texture is nicer . If I’m honest when it’s hot and throbbing/itching cold ice packs and cold chamomile on it soothes for abit but then I need to moisturise not long after !

and yeah I only used the steroid once a day and at night time when I went to bed .

I see what ur saying though about elimination .

@stargirl1701

my baby is 1.5 years now .

@orangeicelollies how long did it take u to find out it was gluten ?

im thinking should I start this with dairy, tomatoes efc . I feel like the list is endless though 😕

One or two nights of soaking in clobetasol will get rid of it for a year or more for me. I find a heavy handed approach right when it kicks off works best for me. No need for steroid withdrawal as I use it so rarely, but when I do I dont hold back.