Any GPs or dermatologists? Eczema hell

[Greenrailings]

Is it possible that paraffin is making my eczema worse? And are there any paraffin-free emollients available on prescription?

I'm trying and failing to control my eczema and it's making me so depressed. I went back to my GP yesterday to ask for a dermatology referral (I was there's no point, it's a two year wait). I also shared my theory that the paraffin is making my skin worse, and asked to try a different emollient. What did I walk away with? A prescription for a new paraffin-based emollient. I've just applied it and I feel like my skin is on fire.

I'm so miserable. I don't know where to start with getting it under control and it's taking over my life.

Epimax paraffin free ointment - can buy it or be prescribed it.

What other products do you have? Any steroid cream/ointment?

Yes, many people cannot tolerate paraffin, and it's well known.

You should be able to buy paraffin-free emollients OTC (over the counter at any pharmacy) or products like Aveeno to tide you over for now.

Were you prescribed Epimax, by any chance? You need to ask for the paraffin-free one. I suspect the pharmacist may say that this has to be specified on your prescription, but it's still worth talking to them.

What else are you using on your skin? Lots of sympathy

Loads! I use Betnovate for flares (not terribly effective, and it always comes raging back), tacrolimus on my face and fludroxycortide tape when my hands crack badly.

I've used loads of different emollients over the years, but I can't seem to tolerate them anymore - my skin immediately feels hot and unbearably itchy, I'm covered in cuts and grazes from scratching

I honestly can't emphasise how much of an impact it's having on my self-esteem, I feel like a dog with mange.

Paraffin-free Epimax is music to my ears - I'm going to contact the surgery first thing to request it.

I'm just so sick of being fobbed off. I had one excellent GP (who prescribed the tacrolimus and the tape) but he left for a job in dermatology, hah.

Do you know the cause of your eczema? Allergies or intolerances? Have you been patch tested for contact dermatitis?

When I was diagnosed with contact dermatitis I was told to use paraffin-based emollients, but they made my skin worse. And burned, sometimes. Once I had strictly cut out my triggers, and my skin had healed (took about a year) I found that I could tolerate many of these creams. Fortunately my need for them was vastly reduced. Unfortunately, I have other allergies that cause my skin to get inflamed, and as soon as that happens I can no longer tolerate paraffin based emollients.

When my skin is inflamed I find that pure coconut oil is vastly better than anything mineral oil-based, except steroid ointments.

I was going to suggest tacrolimus but I see you’ve had that.
Are you in a position to see a private dermatologist?
I think paraffin is notoriously triggering.
aveeno and cetaphil face wash work for me and the protopic was a godsend.

If you can manage to get an appointment privately I would definitely recommend as it made a massive difference for me. They advised being pretty generous with the steroids to clear flare ups fully rather than using small amounts which never really got on top of it and then using plenty of zerobase at all times. Also making sure you let the emollient sink in fully before using the steroid cream. Hope you can find something to help.

The only thing that fixed my eczema was dermatology and injections of biologic drugs (which you give yourself at home a bit like ozempic)

In terms of your GP saying 'there's no point it's a 2 year wait' - if you aren't on the waiting list, it's a million year wait.

I got my GP to refer me to a service that had prepared for being a 2 year plus wait. It ended up being 1 year and the treatment from that first appointment was lifechanging - and unaffordable for me privately.

It is absolutely worth getting on the list, as if you aren't on the list, you aren't getting in.

We have just seen a private dermatologist about my daughters eczema that had suddenly flared really badly ( she's 25 and it was reducing her to tears)

He was adamant it was classic eczema and asked about her steroid use....she was applying spareingly for not very long...the upshot of it was that he said no one uses it properly, even GPs don't understand how it should be used
He also said steroid withdrawal is not a thing.

His advice
Steroid should be used liberally twice daily for 2 weeks then a week off, repeat pattern until skin is not inflamed, start again as soon as something sets it off
Said she could choose her own moisturiser, he has written a letter to the GP for when her usage is questioned

I can't tell you how much better her skin is doing what he has suggested

I'm sure she is allergic to horses, dogs, cats guinea pigs and dust....he agreed and would have happily patch tested but side there probably wasn't much point
She takes antihistamines daily

Yes, I had my annual dermatology review, after my worst year since diagnosis, and he was quite clear that I am under-treating myself. Really slap on the steroid at the first suggestion of a reaction. Don't wait to confirm it.

I had a really bad prolonged eczema flare last year and thought I was reacting to my emollient. But eventually worked out I'd developed a sensitivity to betnovate. Switching to mometasone made an immediate difference. My GP also prescribed an anti fungal cream just in case and my skin has been pretty clear for almost a year now

No, I really want a patch test. I think there's a hormonal element as well, it tends to flare and subside at different points in my cycle, and I didn't have it at all while pregnant.

Can I ask what your triggers are? I don't think I could even guess what mine would be!

This is massively helpful, thank you (and to other PP who've suggested being more liberal with the steroid). It was really drummed into me by the GP that I've got the most potent steroid available, so I've definitely been a bit too shy with it. I'll start today 🤞

Oohh interesting about the anti-fungal. My brother also suffers with eczema and recently tried this, said it worked really well.

How to persuade a GP to let me try multiple different things?!

Get allergy testing. I had it after suffering from eczema for years, and after cutting out all kinds of things, including lanolin, it disappeared completely. GPs are often a bit useless for skin conditions.

I had a severe lupus flare up recently and after no luck at the gp, who don't ever seem to really understand skin problems, I was able to access a dermatologist quickly through my Benenden cover. I would recommend joining Benenden and they take people in with already known conditions. I had 2 consultations plus tests, before being handed back to the nhs hospital dermatology team, and with the medication I now have, haven't had a flare up since then. For what it's worth, part of my treatment was using steroids as the previous poster said - quite heavy usage for 2 weeks, then a switch to something else. I know Benenden have recently tweaked their conditions, but it's worth thinking about and very affordable

How old are you OP? I have eczema and also was better in pregnancy, then it worsened in my forties. Felt like I was allergic to everything. Started HRT and skin is sooo much better. Turns out o function a lot better with higher levels of oestrogen in my system.

Also, have a look at the AIP diet. Boring as hell but may very much help.

I'm 35, but I've always been a bit out of whack with my hormones - can't tolerate hormonal contraception etc. I wouldn't know how to go about getting my hormones checked though? Currently contemplating going for a third baby, so hopefully this worsening eczema isn't a sign of premature perimenopause!

Just wanted to hop on and tell what finally (after 35 years of hell, to the point I couldn't wear clothes or go to work it was that bad!) had 'managed' my eczema, and that is the Dr Aron cream. I don't want to say cure because you can never 100% cure eczema, but any flare ups now are few and far between (like maybe once or twice a year) and using the cream during those times means they are gone within the week.

Within three weeks of starting it, it was as if I had never had eczema! Honestly, an absolute life saver, and I don't say that lightly.
My daughter started on it in the summer as she was red raw and itching constantly and she's had the same results as me.

Only downside is it's pricey as you have to get it privately but honestly when I think of how much I've spent on prescriptions/all manner of lotions and potions/diets etc over the years, it is worth every penny!

@daisydaisyrose wow, I've just googled it and the treatment looks amazing. How did you access it? Looks as if you can only get it via consultation directly with him, which I'm assuming must be £££?

Agree about the cost though - bearing in mind how many emollients etc I've used 2 or 3 times and had to bin, it makes me wince. Not to mention the fact that I've had to get rid of all non-cotton clothing and then replace it. It's expensive!

It's around £185 for the initial appointment (online), with Dr Boyden who is so so helpful, then you need around two/three follow ups over the month to check progress and make any amendments to applications etc, which are cheaper. The cream itself is around £65 per pot, which does go quickly in the initial stages, but once the eczema is 'cured' then you only need to apply for flare ups.

In fact I eventually ran out of mine two years later, so had to have an appt to get a new prescription as it had been so long since I had my last pot prescribed!

Sometimes your GP (if they are understanding and have a good dermatology background) will prescribe the components of the cream and you can mix it yourself, but most (including mine 🙄) won't as they say it is prolonged use of steroid cream. The cream has a moisturiser base (he will find the one that best suits your skin), with steroid and antibiotic cream mixed in but it is very diluted. The irony was that I was being prescribed 100g tubes of Dermovate every single month for about 25 years!!!!

Happy to answer any more questions if you want me to, but honestly, it's been life changing, for both me and my daughter, can't believe we had to suffer so long!

www.eczema-doc.com

This is the link you need.