To be fucked off with this dermatologist and want to cry/smack him?

[SneakyGremlins]

Skin issues AGAIN

I've been on immunosuppressants for a month to try and tackle a really bad eczema flare up, which got serious enough to land me in A+E with suspected sepsis. I was previously on steroid tablets which cleared it up, but was told I couldn't stay on them.

Saw the dermatologist yesterday and let him know that the eczema is coming back worse than ever, despite immunosuppressants, and that I've been experiencing side effects - nausea, and feeling extremely disoriented and woozy for hours on end

All he said was "We can't keep switching you from drug to drug", and that was that He handed me a prescription for two more months of immunosuppressants, and sent me away.

This is just too much to handle, I can't go through all this again I have the doctor on Monday, is there anything I can say?

I would genuinely rather have 40 years less lifespan and have them be clear skinned years

Pro topic made my face burn. Hated it.

The immunosuppressants are used as ' steroid sparers ' as the side effects from long term steroids are too multiple and systemic to be generally allowed these days.
He's right that you can't switch too frequently as they take time to work and it will become very unclear what is helping.

Betnovate is a mild steroid cream - you may need to blitz it with something stronger

Eczema sucks

And do you have to be so rude about a doctor who is helping you.

I haven't read the whole thread but Liz Earle recommends Evening Primrose OIl (it cleared her horrible eczema). I don't know if you've tried it but It does need 6 weeks of using twice day to make a difference.

Also you could try giving up tomatoes , pepper and vinegar , that might help too.

So sorry, my mistake. It's psoriasis that Humira is approved to treat, not eczema. There is another biologic drug that was recently approved for eczema:

www.nytimes.com/2017/03/28/health/drug-prices-fda-eczema-skin-disease.html

Try giving up wheat and dairy for a month to see if that improves things?

SneakyGremlins I dont have any advice as have rosacea and its a never ending battle to have even a single day with skin that doesnt cause me embarrassment, so I completely understand that feeling. I hope you find the right treatment soon xx

I totally feel for anyone suffering from eczema. I’ve never found a dermatologist who could help me, most of them made me feel worse. The last straw was when one said, ‘Eczema is the bread and butter of dermatology.’ I think it is incredibly lazy and dangerous how they keep prescribing steroid creams and immunosuppressants.

I can’t speak for anyone else, of course, but here’s what helped me get over a terrible flare-up:

• I was using Aqueous cream as a moisturizer because it’s so cheap and I needed to use lots of emollient. Don’t! It’s okay as a soap substitute, but it contains sodium laurel sulphate. It was only ever meant to be a soap substitute but then doctors started telling people they could use it as a moisturizer. The best body lotion for me is Vaseline Intensive Care fragrance free advanced repair. And believe me, I have tried EVERYTHING, including dermo-prescribed stuff. I also use a gentle shampoo and shower gel (Pears, Simple). On the whole I don’t think it matters what you use as long as you rinse really well.

• The Dermasilk clothing range, specially created for people with eczema. Google it. It’s brilliant but expensive, you can sometimes get it on the NHS. If you can’t afford anything else, buy the Dermasilk gloves and wear them at night. Really soothing, better than cotton, and they lessen the itch and help you stop scratching. I found out about this myself, no dermo told me about it.

• I tried all sorts of diets, but none worked and they just made me more miserable. I have (during bad flare-ups) developed full blown allergies to cod/other kinds of fish, and blue cheese. No doctor/dermo could explain this, but I’ve heard it’s not uncommon. There is some thinking now that people with eczema can be more vulnerable to developing allergies simply because their skin is damaged.

• Steroid creams have their use, but they MUST be used correctly (again, no dermo told me this). You start off with a strong one and use it for several days, you then start a lower strength one and end up with the lowest. Most people stop them too soon - you need to heal all the layers of your skin, not just the top layer. That’s why they often don’t seem to work and have a rebound effect. And I would certainly refuse to take steroid pills for months. That is not safe.

• Scratching! I always thought I had no control over my scratching and it made me feel so helpless. Then I read about a programme (I think some dermo outpatient clinics in London have it, can’t remember which) to help people with eczema lessen their scratching. You start off recording all your scratching for a week, use a tally or pencil mark on paper every time you scratch. You’ll be horrified at the results, but that’s fine! You then start trying to bring it down. Pressing gently on your skin each time you want to scratch, holding a smooth cold pebble on the itchy area, counting to 30 etc. It’s simple but not easy, so don’t beat yourself up. The idea is to lessen your scratching so that the skin can heal and feel less itchy. In time, your skin will strengthen.

• Dead sea salts in the bath, or seawater in general. Feels lovely and it helps.

• I can’t use anything except Vaseline on my face and neck. A bit yucky, but just smooth it on then blot. Anything else irritates.

• Stress in itself won’t make your eczema worse, but when you’re stressed you scratch more. Whatever helps you reduce stress, do it. Emotional support is also important.

All the best to everyone. xxx

Google Hannah Sillitoe. I know someone who follows the (drastic) diet and they say it changed their life.

There are other ways to deal with eczema,
Oats in the bath
Probiotic capsules
Moo goo irritable skin balm xxx

If one more person suggests oats in a fucking bath to me I am going to shove oats up their arse until they can taste porridge.

Miggeldy
Similarly fucking Aveeno. It isn't an eczema cream and does bugger all for us.

And the book that really helped me: ‘The Eczema Solution’ by Sue Armstrong Brown.
It’s the Chelsea & Westminster hospital that has a clinic for anti-scratching techniques to help eczema patients, originally developed by Dr Peter Noren. There are clinics in other areas too. Ask your GP or (maybe better!) just google.

You never know when you’re going to get a flare up and have to change again but I’m currently using Sanex 0%, Body Shop Hemp hand cream and Body Shop vitamin E intense moisturiser.

I know how frustrating it is to keep buying stuff that doesn’t work but you can get samples in the body shop and Lush so maybe try the ones from there first.

As the PP said I’ve found the best (although hardest) things you can try to do are to destress and stop scratching. Easier said than done and sometimes the only way I could stop myself scratching where the eczema was bad was by lightly scratching healthy skin, sounds crazy but it was much easier to stop again and not make myself bleed like if I had scratched the damaged parts. Really hope you get somewhere with it soon.

Miss I'm not sure humira is licensed in the U.K. for eczema. I've had a quick look and there is a new biologic is the us that's been made (I think) specifically for eczema. But it's an IL inhibitor rather than an anti-tnf. I take an IL17 inhibitor after failing the anti-tnf's humira turned me into a raging monster and was taken off before I was arrested for gbh

Op it really sounds like you need additional/change of meds. I've heard Tacrolimus cream does wonders, apologies if you've already mentioned trying it.

Sometimes a new drug does that to you and it settles after a while.
It happens with anti depressants, contaseption etc and might eventually help. I think I would complain about this doctor though doesn't sound like he has great people skills, I'm affraid that's his job to help people and this isn't being very helpful to someone who is so stressed. My partner has been struggling with psoriasis for years and they have gave him numerous creams that have never helped. In the end he started using sunbed which do clear It up but obviously went idea although this probably wouldn't help eczema. There is also a cream he found, it's a baby cream called child's farm, £4 he found it in Tesco it also really helped. Again not sure if this would help with eczema.

This is just extrapolating from pet animals but sickness can be helped by keeping ciclosporin tablets in the freezer... Maybe something to ask the pharmacist if you could try?

*I asked for this and was told it doesn't exist.

What doesn't exist*

Allergy testing.

If I cut out wheat and dairy eczema clears up but every so often I get a flare up and wondered what else I am allergic to.

I had patch testing on the NHS but not for food related allergies.

@bridezilla - Even Sanex 0% has SLS in I believe. My skin so much better when cut all SLS products out and son never allowed near them.

And yes.....people who suggest Aveeno don't understand Eczema with a capital E. So many times I have had to sit through suggestions of products from people that are basically moisturisers full of all sorts whilst nodding and smiling and realising that they have completely misunderstood that situation. Still, can't be helped. Unless you live through it, you can't understand, like many illnesses/situations.

Hear Hear Miggeldy!

Do people really think that eczema and psoriasis sufferers haven't tried lots of different things, that there is a reason that we have ended up on super strong medication?

It drives me absolutely batty and it makes me think that people must be blaming me for not trying hard enough by not trying yet another folk remedy that is being suggested.

It does take ages for immunosuppressants to work unfortunately. But I've found the side effects do lessen if you can bare to take them long enough.

Sadly methotrexate isn't quite doing the job for me and I'm near the max dose, so I think the derm will be switching me on to something different next time,

I'm about to go back to the dermatologist. So sick of the itching and burning and bright red patches that people keep commenting on.
Really? Is my skin looking shit? I had no idea.
So far I have managed not to say that.

So sorry you are suffering so op. My ExDH was also on ciclosporin for a time and got septacaemis twice in a 5 week period resulting in a 6 day hospital stay each time. Ultraviolet treatment didn't help either. He suffered horribly for years.

Our marriage wasn't fulfilling either of us and, extremely amicably, he moved out of the family home and away from the chaos of a 7, 4 and 5 year old. Within a week the open sores had healed, within 4 weeks nothing but slightly scarred dry skin remained! 16 years on, he has lovely skin still!

My point is, hopefully you won't suffer forever! Whatever stresses may be contributing to your condition will hopefully change and lessen over time.

Miggeldy and Kitten - oats in the bath worked for me and were one of the things that stopped me from being returned to hospital on several occasions with my eczema! That said, they worked AFTER the steroids and drips and antibiotics had got things under control a bit.
Sorry they are ineffective for you. Eczema SUX.