Dr Aron treatment - day 9

So, the whole process of signing up with Dr Aron was really easy. I filled out the form online, sent my photos and made the payment, and then I waited.

Within 5 days, an email popped into my inbox from Dr Aron. He had sent through a prescription tailored to me, based on what I had written and my photos. He also gave me very explicit instructions on what to apply, and when.

My prescription did not contain an emollient - I wrote back to query this and he replied within minutes (great communication!). He explained that he was not including the emollient for me due to how tough hand eczema can be to clear.

I decided to trust him, and do exactly what he said.

My prescription was for one cream to be applied 4x daily, and a compound to be applied twice daily. I already had the cream in my eczema arsenal (ha ha ha) so all I needed was the compound. Dr Aron said the private pharmacy, Landy's in London could make it up for me. But before I went that route I decided to try my luck with my GP. I saw him and explained what I was doing and to my surprise he prescribed the components for me. I then mixed them at home myself. What a result.

The treatment bought me relief within 2 days. My skin was nearly clear after 5 days. The past two days I have noticed those telltale brown spots on my palm - the nasty little pompholyx blisters fighting back, trying to win as they always do. But so far....I am winning. The blisters seem controlled by the treatment - some have shrunk back down. Some are still there lurking, but not causing me any itching or pain. They make me so nervous though! Ugh!

Here is my left hand the morning I started treatment:

And it here it is on day 7

You can't really see the blisters as they are tiny, but they are there. Still - a huge huge improvement.

One thing I have really noticed is my mood. I am literally ecstatic about not itching all the time. And I am pain free. One of the things that comes up time and time again is the role of stress in pompholyx eczema - it can supposedly exacerbate things quite significantly. I have been incredibly stressed about this, because nothing I do seems to help. It has occurred to me therefore, that if this treatment causes my stress level to go down, then maybe that will also help to improve my condition.

Anyway. It is very very early days for me and I am yet to begin the tapering down process, which is really scary as I dread the return of the blisters, and yet I don't want to be using high dose steroids and antibiotics long term. But I will follow his instructions to the letter, and see where it leads me.

My non-itchy fingers are very much crossed!

Another treatment fail. Could Dr Aron be the answer?

I haven't updated for a while. I could go on and on about this but long story short, the nystatin and candida diet didn't work for me. I really gave it a good go - I didn't miss a dose of the anti fungal and I was so strict on the diet - I actually lost a lot of weight on it and people started commenting on how thin I looked (and not in a good way).

I might have continued if I had even minimal improvement, but I didn't. My hands looked awful at the end of it all.

So I began to think through my options:

1. Do what the dermatologist had suggested: 2 weeks of dermovate (a strong steroid) twice a day, then a week off, then top up at weekends

2. Strong oral medication - methotrexate or toctino

3. Homeopathy

4. Dr Aron


I ruled out option 1 quickly - it was the same old same old strategy I had been trying for months. Yes, dermovate clears most of the blisters up, but they flare up again within a couple of days of stopping. Why would it be any different now.

Option 2 was very unappealing - both drugs have significant side effects for the liver/kidneys and neither are compatible with pregnancy should we want to add to our family. I put these aside for now.

Option 3 I did think about and have not ruled out, but the evidence base is poor. Would it just be more money spent on something with little likelihood of success?

And that left option 4. For those who don't know, Dr Aron is a dermatologist based in South Africa. Rather gallingly, he used to work privately in London, in a clinic just minutes from my house. But anyway, he is now abroad but you can consult with him online.

Dr Aron's approach is not startlingly different from the norm - he still believes that eczema needs to be treated with topical steroids, however he believes that the role of the staph bacteria in eczema is massively underestimated. For this reason, his treatment combines a steroid, an antibiotic and an emollient in one compound cream, which is applied regularly at first, and gradually decreased. He doe not believe in the "short burst" treatment so popular in the world of eczema, and which has never worked for me.

I was hesitant about signing up. Firstly I worry so much about long term steroid use - just look at my first post back in November 2016 where I adamantly claim that steroids are not the answer. Secondly, his success is mostly with atopic eczema in children. He does have good results with atopic eczema in adults too, but very limited examples of success with pompholyx treatment - not because his treatment doesn't work, just because it is less common and there are fewer case studies. Thirdly, as a newcomer to his Facebook group, the love and adoration for this man is slightly overwhelming....he is almost treated like a God of some sort. But to be honest, having suffered the pain of eczema as I have, I can imagine the utter relief people must have when something finally works, especially when it is their child who is affected. Finally, I guess the whole idea of consulting with a doctor via the internet with funds being sent online seems a bit dodgy.

But - there were a huge number of people in the group who had done just that and had success and honestly, I was feeling desperate. I decided to go for it.

The end of a flare up.....usually signals the start of the next

It is day 17 of my nystatin and low carb diet approach and my flare has finally come to an end. By 'flare' I tend to refer to the blistering stage which for me is the absolute worst part of having DE. I am still dealing with the aftermath which is incredibly dry, cracked skin - but as far as I'm concerned, this is the healing stage. This is what it looks like - and for the record, I actually moisturised only a few minutes before this was taken. Even almost 2 years on, I'm amazed at how this just seems to suck up moisture within seconds - its like I never even moisturised at all!

First up is the left hand - this has always been the worst of the two. I have developed an open crack on my palm which is quite painful.

Right hand - I only developed DE on this hand around 3-4 months ago but this is the most extensive it has been.

I am feeling like this is a really crucial point for me. If this treatment is working, given that I am over half way through now, I would expect improvement from this point on - either no further blisters, or maybe a significantly less severe flare. 

Do I think that is going to happen? Honestly, no. I suspect in a few days I will have a new outbreak just as bad as the last, if not worse. But I will live in hope that I am wrong!

The emotional turmoil of dyshidrotic eczema

Normally I blog about my journey towards a cure for my dyshidrotic eczema (if you're reading regularly, you'll know that it isn't exactly going my way). But today I wanted to post about something else, the thing that people who don't suffer with eczema don't realise. How much this condition can really affect day to day life.

I am now 19 months into this hellish experience and with every day that passes, I find myself reflecting more on more on just how much this is affecting me.

I'm angry - I'm so angry that this is happening to me. I'm angry that I've spent hours and hours of my precious time trawling the internet for answers that I'm not getting from doctors. I'm angry that I've already spent several hundred pounds searching for answers. I'm angry that I spend most of my day thinking about my hands, wondering what I'm going to do about them. That when I should be enjoying time with my little boy, my mind is jumping around, thinking about different options and making plans for what I should do next.

I'm frustrated - why are the treatment options so poor for eczema? I guess I know why - the money is going towards life limiting conditions, and of course I understand that. But it feels like there is no understanding of just how much this can impact doing simple tasks. When my DE is at its worst, it is painful to hold a pen. I wince when my toddler holds my hand. Getting my hands wet makes it worse, and with a toddler it is almost impossible to avoid that. Reading the studies on what actually works for DE makes for depressing reading....there really is very little that does work!

I'm miserable - living day to day with constant itching and pain is really quite depressing. There is no escape from it. Whatever I'm doing it's always there, a constant reminder that I have this problem, and that nothing I do is helping. The restricted diet I'm on is horrible - I love food, its one of my greatest pleasures in life, and now I can't eat any of the things I love. Going out with friends is difficult; now I'm the awkward person who needs to check all the menus first. The person drinking a peppermint tea whilst my friends enjoy a chocolate dessert.

I'm jealous - I'm jealous of other people who don't have eczema. I find myself looking longingly at people's smooth, blister free skin and wishing that my hands looked like that. I'm jealous of other Mums who can help their toddler build a lego tower without catching the bricks on the blisters all the way up the sides of their fingers.

And despite all this I still consider myself a positive person. I try to keep smiling. I do yoga every day to try and keep my stress levels down. I keep searching for a cure...looking for my answers, all the time because I am determined that I will beat this.

But some days I just feel like I want to scream.

If anyone is reading this...tell me it isn't just me??

I wish I had something positive to share....

but I don't. I am now on my 6th day of this current flare up and I have woken up with new blisters every day. This is easily the worst flare up I have had now in terms of coverage (it is now very much on my right hand which had cleared up, more extensively than before) and in terms of how long it is lasting - each night I think that its over, its calming and I will now begin the healing process - the horrible peeling and splitting. But no - in the morning, new blisters are there again. It is relentless, and I am exhausted - not least because this diet is basically sapping all my energy.

I am 12 days into my nystatin course, which lasts 28 days, so not even half way through. There is a small chance this is die off....but it all just seems so far fetched to me. I just can't believe that this hideous state of affairs is a positive sign.

I'm determined to finish the course but I really am struggling now - I'm constantly itching or in pain, 24/7. This is no way to live.

Gutted.

Well....day 14 has arrived with an outbreak similar to those I had before starting the treatment. My left palm and two fingers are covered in blisters and they are itching. I had to take an antihistamine to stop me itching earlier. It has been over 2 weeks now since I felt this infuriating itch...argh I had almost forgotten how horrible it was. Just yesterday I was saying to my husband that I thought I could live with the ugliness of the blisters, as long as they didn't itch, and didn't crack and peel. Spoke too soon I guess.

I have remained hopeful up until now, focusing on the fact that the blisters I was getting were fewer in number, below the skin and not itchy. It is hard to stay positive in the face of a flare up like this. But I am trying. My right hand is, for now at least, totally clear, which I should celebrate. Now the left hand just needs to follow suit.

I keep reminding myself - this is a month long treatment minimum, so I am only half way through. The very few people I have read about who have tried this report that the treatment does take time, and blisters do continue to come throughout. So I mustn't lose hope - I have to keep going and just keep my very itchy fingers crossed, that this passes.

An anxious process

So here I am on day 11. Feeling pretty damn hungry on this horrid diet, but managing to stick with it!

Since I last posted I received my nystatin in the mail. I made a change to my regime and dropped to 1x itraconazole tablet per day alongside 3 doses of nystatin.

Since the little crop of blisters appeared around day 5, I have had more appear. To be honest, they don't look great. But they certainly are behaving a little differently to normal in the following ways:

1. They don't particularly itch....I have had bouts of itchiness for a few minutes, but that seems to dissipate quite fast
2.  They don't seem to come up to the surface like normal - usually once blisters appear I can pop them and they produce that horrid clear fluid, but I can't do that because it's almost like they are staying below the surface
3. I haven't ended up with the open cracks and sores that usually follow the blisters - they either seem to retreat back down, or sort of dry out leaving very dry, flaky skin.

Here is a comparison between before I started, and today, day 11. I guess the clearest thing is just how much less inflamed things are. But even so - seeing those blisters lurking there is freaking. me. the. hell. out.

But I am trying to stay calm and not panic. I keep telling myself that even if I am on the right track here, this isn't going to disappear overnight - I have suffered for 19 months, it is bound to take time to improve, right?!

  

You'll have to click onto the day 11 picture to enlarge it, to see the blisters in all their glory - but I guess overall, its pretty clear there is an overall improvement happening.

On the plus side, the sides of my fingers are less red and inflamed than before:

So for now, I'll keep going, and keep hoping that this gradual improvement keeps on happening. Fingers crossed.