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

If only there was a medicine that actually worked when you needed it

there are loads of them.

As I said If it was so good why is anyone ill ? Why are the hospitals full of ill people?

I'm not even going to bother talking to someone with this inane "reasoning".

You don't need to save for lush dream cream, just go in and ask for a sample and they will give it to you free, same with most products in there.

I know nothing about eczema, but plenty about Lush. HTH.

I thought the Lush Dream cream worked because it had the same ingredient as Aveeno - oatmeal, so if Aveeno doesn't work for you I'd be reluctant to invest in Dream Cream - if money is tight.

Known Ah, didn't know that!

I live nowhere near a Lush, so would have to save to buy online..

It is worth persevering to find what your unique triggers are but you really have to think in years. My friend found petroleum products set her skin off and they are in loads of emollients. The sls in supposedly skin friendly soap-free cleansers and shampoos are worth avoiding for while too.

Keep going with the cyclosporine, it will eventually kick in.

I also have to agree with a PP, if you have Eczema with a capital E then nothing you can buy otc will make a difference, you need the big guns. Primrose oil is unlikely to make a difference. Avoiding anything with SLS in it will help.

Protopic is absolutely amazing and very expensive, hence the NHS’ reluctance to prescribe it.

It's definitely ECZEMA all in capitals....

I asked the GP for some oilatum and was told they don't prescribe it anymore..

OP- I haven't read all the replies so sorry if this has been mentioned. Have you heard of Dr Aron? If you Facebook look him up on there- or else google him he has a website. He's a South African dermatologist and he has literally changed my life. I now have a baby which if I hadn't have found Dr Aron might not have happened. I too was on immunosuppressants (3 types of the course of 5 ish years meaning that pregnancy was no an option unless I weaned off them and went without). Topical steroids moisturisers and antihistamines. I was miserable and still had flares and my blood count was all over the shop. He treats me with a compound cream and I have email consultations with him now (having seen him once when he came to work in the UK for a couple of weeks). He weaned me off all other treatment. He treats adults and children all over the world and it has changed my life. I'm still on the cream but have tapered down hugely and my skin is clear. It isn't a cure but it's an effective treatment. My GP prescribes for me and my nhs dermatologist was ok with it (lots aren't apparently) and has even discharged me.
Look him up. You won't regret it. I also believe there may be some sort of fund of money raised for those who can't afford treatment that is available. Look up on the Facebook group and contact an admin- they are v helpful and friendly.
Good luck.

I used to be able to kill the itch by concentrating really hard and thinking about what the itch actually felt like - when I really thought about it, it stopped itching.
I have dyshidrotic eczema on my hands and the itch is not a problem anymore - anyone any tips how how to deal with it?

Sneaky, I know it sounds totally mad, but my brother cured his completely. He had to wipe a feather over all the sore areas every single day. It didn't clear up right away, but it did sort it out after a while

Just when you think people can't get any worse.....

GPs im area still prescribe oilatum-is it worth trying a different GP in the same practice-Oilatum shower gel is good cos u don't have to faff with a bath if u don't have time.

Have you tried bathing in your own pee OP? Urine is sterile and can cure a whole host of problems, athletes foot for one. Some also drink it. Could be worth a try.

Interesting that Dr Aron warns against swimming in the sea - as a child I always found my skin improved when I spent two weeks with daily dips. Chlorine swimming however, even sitting in the same room as a chlorine pool would leave my skin raw.

Mine was very bad a few years ago (not hospital bad but infected bleeding cracked hands bad). My mum read an article in the daily mail about coenzyme Q10 defficiency. I was not impressed. Not somewhere i'd normally relate with sound medical advice. She brought me a 30 day bottle of pills which werent cheap, so I said I'd take them. It worked for me.

Asda sell them now £5/30 every so often they have them 3 for 2.

I don't take them now its all in control at present - wish I could say the same for my asthma.

I know that no one solution fits all, but if you're at that tare your hair out scratch all your skin off stage then I'll throw it into the mix.

Get your nutrients from food if you can not artificial supplements, real food comes with all the other bits and pieces that your body need to absorb the nutrient - you can get coenzyme Q10 from organ meats like liver, which is pretty cheap.

@KnownUnknowns i'll live and learn. Can be a bit if a vicious circle. I could barely hold a knife and it hurt when i did, with my hands bad, so probably was eating more prepared. My diet has been much healthier last few years and skin is too..

Good luck to all the other 'capital E' sufferers!

I am doing ok at present, but on methotrexate - so that's why.

No bleeding sheets in the night etc, which is nice :)

Really minimal use of cleansing products - which is a shame as I used to like a good mint shower gel.

But hey, just happy to be relatively normal skin wise.

For me, normal = able to move like regular people.
Blotches, scars etc - yeah whatevs..

@RippleEffects - I have two life limiting skin conditions and my diet has the biggest effect on both.

I wish I could heal both by popping a pill - fuck do I wish it was that easy...medicines are great when they work - when they don't and surgery is not an option, unfortunately doctors lose interest and we are often left alone - like the OP - to figure out a treatment plan for ourselves.

Fortunately for many of us, we find other sufferers have taken to the internet, facebook groups can be particularly useful, just chose carefully and they are willing to share what has worked for them - not limited to what has been proved scientifically and in spite of the lack of support from the medical profession, they have helped heal themselves and helped others heal. I am so thankful to the people with my skin conditions who have shared their experimental successes, because using their experience my skin is 90% better.
So people please keep sharing what works for you because as sufferers we need your help!

Have you looked into your acid and alkaline levels in your diet? Sounds mad but if you exclude nightshade (spuds, tomatoes, peppers, strawberries etc) and aim for 80% alkali foods, it works wonders for skin conditions.
Also youtube home made body butter. Organic shea butter 3 cups, coconut oil 1 cup with a few drops of lavender essential oil, melt all ingredients except lavender in a ban marie, remove from heat, stand 10 minutes (keep stirring), Bung in freezer for 20 mins, take out, add four tbsp water, essential oil then whisk until fluffy. Pour in sterilized stubby kilner jar. When you use it, take out a bit, rub it between your plans to melt, then apply.

Careful Jamie You'll get the intellectual of the thread telling you nothing works that is natural like lavender (it's a herb of course and I know it's brilliant) but she knows EVERYTHING.