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.

An update....

I haven't written in a while, things have been busy, but I wanted to update as even if nobody is reading this, its good to keep tabs on my progress.

So after my last post, I went ahead with the fexofenadine - and much to my surprise, it helped with the itching considerably. At that point I decided I had to re-read the advice on www.dyshidrosis.co.uk and give it a proper go.

First thing I did was contact my Aunt in Mexico - she was amazing, and managed to get me Nystatin over the counter as it isn't even available in the UK on prescription. She posted it to me and I should receive it any day now.

I then had my appointment with the private dermatologist. She told me the following:

• The pattern of dyshidrosis I have, described as an 'apron' with a patch on the palm and strings up the fingers, is almost never caused by a contact allergy.
• She doesn't believe that eczema of this type is linked to food allergies or intolerances (she believes there is a link between childhood eczema and food however)
• I will probably be dealing with this for the rest of my life. How uplifting.

She offered me methotrexate and toctino...I turned them both down, though it is good to know toctino is an option in the future. She told me to use Dermovate again...two weeks of steroid application morning and night, and then every weekend to keep it at bay. I did tell her that Dermovate doesn't seem to help it, but she pretty much said that was what I needed to do to get clear.

I did however, ask her about the id reaction - is it possible, I asked, that this is a secondary reaction to a fungal infection elsewhere on the body?

"Highly unlikely and very rare" was her response.

I told her that I thought I might have a candida overgrowth following multiple antibiotics, which she pretty much rolled her eyes at. I also told her I had a small patch of scaly skin on my foot and wasn't sure whether it was fungal or eczema. She said it also wasn't clear from looking, but when I asked her if she would prescribe an oral anti fungal for me to try, she surprisingly agreed.  So, off I went with a 28 day course of Itraconazole.

She told me to take 1 a day....but I did my research and decided to take 2....its safe, I looked at reputable guidelines, and hey - I like to live dangerously. I also started a very strict low carb low sugar diet at the same time.

Amazingly my hands improved overnight...it was quite a drastic improvement and I had to contain my excitement. Four days in things were even better....my hands were looking almost clear. Then day 5 hit...and so did new blisters. I panicked, but tried to stay calm. Today is day 7.....I do have new blisters, but nothing like as many as before and they are less itchy, and seem to shrink down quite quickly. I guess I don't know what to expect with this - immediate improvement? Gradual improvement? Continued breakouts which are smaller and less severe? Its all completely experimental. But I have to focus on the positives, that things are looking up, at least for now.

Here is a progress picture - before I started, and today, day 7,

Confused

That is the best way of describing my state of mind right now. I literally cannot focus on one possibility at once - my husband jokes that I have a new theory every day...he might be right.

A couple of weeks ago I had a brainwave - maybe I was allergic to my phone. The pattern of eczema exactly fits how I hold the phone! It is in a rubber/silicone cover so maybe I was allergic to that. I tested the phone itself for nickel and it came up positive. I really thought I had found the culprit once and for all. I didn't touch my phone for 2 weeks, which was a very tricky feat, but sadly there was no improvement in that time. I got myself a nice wooden cover though, just to be safe. At least my phone looks pretty.

In the meantime I have been continuing with the diet - gluten free, dairy free, egg free and very low sugar. I am eating fruit, but no processed sugar at all. I have good days and bad days - sometimes I think things look better, but two days later things are worse again. I will keep it up for longer though as I need to give it more time.

One thing I did notice though, is that it seems to get worse at certain points in my cycle. This got me thinking about hormones again, and the fact that this all kicked off properly after I had my son. I ended up back on google and eventually hit upon an article about how changes in hormones can be linked to an increase in candida. Hmmm.....back to the very beginning and the candida theory proposed by the website I had found very early on. I had sort of dismissed it as it wasn't well written or referenced. But now I think I need to give the advice there a go.

So - the plan is to do 5 days of fexofenadine anti histamine as advised - supposedly if my symptoms improve, then it suggests that I do have an allergy to a dermatophyte, probably candida of some sort. In which case the treatment is the low carb low sugar diet (already doing that pretty much) plus nystatin....which is impossible to obtain.

Well, first things first. I will do the fexofenadine and see what happens.