Dr Google will see you now….

I know, I know - googling symptoms isn't usually the greatest idea. In the past I have diagnosed myself with all sorts of incurable diseases by consulting Dr Google. But when it comes to DE, the fact is, Google has taught me much more than any medical professional has.

For one thing, I have learnt from other sufferers that there are some natural ways of relieving the symptoms - apple cider vinegar soaks have really helped me on the itchiest days, as have bicarbonate of soda scrubs and epsom salt soaks.

But the main thing I have learnt from Google, is that there are people out there who have cured their DE, by finding out what their trigger is, and making changes to avoid it. Now I need to do the same.

So what do I think the potential cause might be? Here is where it gets tricky. It could be any number of things. But these are the things that I am considering at the moment:

• Systemic nickel allergy. I already know I am allergic to nickel, so maybe I am one of the unlucky few who is sensitive to nickel in my diet. In this case, a low nickel diet might help.
• Unknown food allergy - I have never had any food allergy testing before, but I could well be allergic or intolerant to something I am consuming on a daily basis.
• Candida overgrowth. There is a website out there which claims that this is the cause of most people's DE and that it can be treated with nystatin and a low sugar/low carb diet. Unfortunately it is very poorly referenced and there is little evidence in the research. However I have had multiple courses of antibiotics, and have noticed my DE has worsened when antibiotics are in my system.
• Unknown contact allergy - it has been over a decade since my last patch test. I may well have new allergies now. Allergy to isothiazolones is one that particularly interests me; pictures online show allergy symptoms very similar in presentation to DE, and this chemical is in all sorts of products we use day to day.
• Mould allergy - I have heard of some people who have had DE when exposed to mould, and have cleared up once the mould is removed. We have had damp issues in our house since we moved in 2 years ago, and my condition has certainly deteriorated in that time. But we have since  repaired the damp so I would hope that we don't have mould any more….and my hands are still a mess.

So there's my list….quite frankly I haven't known quite where to start with all this, but I have made a few tentative steps.

On the assumption that I may be allergic to isothiazolones, I have stopped using all products and resorted to plain olive oil soap for everything, and vinegar and bicarb to clean the house. It hasn't really changed much, but obviously I could have a different contact allergy that I am unaware of.

Diet wise I am all over the place - I have tried low nickel for a bit, then low sugar/low carb, then back to low nickel….essentially I am horribly impatient. If I don't see immediate improvement or I get a fresh crop of blisters, I assume it isn't working and change tact. I realise this is foolish but my head is all over the place right now and I can't seem to focus on one thing at a time.

Next week I have an appointment at a specialist allergy clinic. Its going to be expensive, but at this point I don't care. I need someone to listen to me, and to help me get to the bottom of this.

Treating the symptoms

So far, I have seen two GPs and two dermatologists about my DE, and without fail, all of them have focused on trying to get rid of the symptoms - the itching, weeping, cracking skin.

The GPs both prescribed steroid creams of increasing strength, all of which seemed to work for a short time, but then stopped. Eventually after months of using Dermovate, which is pretty much the strongest steroid on the market, I asked for a referral to Dermatology.

The first Dermatologist I saw was sympathetic and understanding, which helped. She offered the following:

• UV light therapy - I was to come to hospital twice a week for 3 months, for a 15 minute treatment. The hospital is 25 minutes from my home, there is no hospital parking, and finding expensive pay and display parking on the packed high street is a nightmare. Add to that the fact that I am a working Mum with a toddler, and my employer (which happens to be the NHS) insist on us using annual leave for medical appointments….well, this wasn't an option for me, even though it appealed.
• Methotrexate - this is an extremely toxic drug, which is used for cancer treatment in higher doses. It would mean regular blood tests and cannot be used in pregnancy. I took the prescription but after doing my research, decided that it wasn't for me, particularly as my husband and I are considering adding to our family in the not too distant future.
• Prednisolone - a course of oral steroids. Oh, how I wish I had researched this too. I took this option in desperation and of course my hands cleared beautifully. But I endured weeks of insomnia and increased appetite, and as soon as I tapered off the treatment the resulting flare up was my worst yet. Never again.

In a letter to my GP, the Dermatologist mentioned that I might consider a low nickel diet if the above treatments didn't work, and said she would discuss it with me at our next appointment. This is the first and only time that a medical professional has suggested the possibility of treating the cause, rather than the symptoms.

I arrived for my next appointment feeling positive and armed with questions about the possibility of dietary links to eczema, only to be greeted by a completely different Dermatologist. So much for continuity of care.

After going through the entire history of my DE again, this Dermatologist completely dismissed the suggestion that there might be a link to diet. She began asking me what creams I had tried….I could see where this was going. I was insistent that I had tried steroids and they didn't work and I didn't want to continue. She prescribed me Protopic - not a steroid, and not something I had heard of before. To be fair, I am currently using the Protopic to keep the flares under control, but it certainly does not clear the problem completely, and I have my concerns about using it long term. 

I also requested - no, insisted - to be referred for patch testing. I had been patch tested previously over a decade ago and already knew about my allergies to nickel, cobalt and lanolin, but I suspect I may have developed new allergies since then. The Dermatologist rolled her eyes at me, but clearly keen to get me out of her clinic, she made the referral. That was almost 2 months ago, and I am still waiting for an appointment letter.

Frustration is probably my main feeling towards these medical professionals at the moment. Frustration at their lack of understanding of this condition and how it affects people, and frustration at the lack of focus on supporting patients to find and treat the root cause of the problem.

I'd be very interested to find out if others have had similar experiences - are there any forward thinking doctors out there?!

Where it all began...

I have had atopic eczema since I was a baby. Thankfully, it has always been fairly mild. I have had a few more severe flare ups here and there, usually during colder weather, but nothing that regular moisturising and the occasional burst of steroid treatment couldn't fix.

I can't remember the first time I first saw those little bumps on my finger. I think it was a few years ago. There were only a few of them - just on the fourth finger of my left hand. They were incredibly itchy….unbelievably itchy in fact. Trying not to scratch them was impossible. So I scratched. The skin became red and inflamed. Eventually the bumps started to dry out and my skin became cracked and broken. Ouch. Then it healed. And that was that - what a relief, I thought.

Over the next few months, the bumps would appear again from time to time. Always in the same place, always the same cycle of itching, inflammation, cracking and peeling - thankfully, the cycle was short. It was annoying, but it wasn't a significant problem. I didn't even try to find out what it was.

Fast forward to June 2015, and I had just had my little boy. Sometime in the weeks after his birth, those little bumps appeared. But this time there were more of them. And by the time the skin had cracked and was beginning to heal, new bubbles were appearing under the skin. Over the months than followed, the bumps began to spread. They appeared on the third finger of my left hand. Then on the palm. More recently my right hand has also been affected. My skin has been constantly flaring since my son was born - there are no breaks between flare ups, and at this point the condition is affecting not only my hands, but also my mood. It is really, really getting me down.

Of course, I now know what this horrible affliction is - it is dyshidrotic eczema, otherwise known as pompholyx. And there is "no cure" - or at least, that is what dermatologists seem to think.

So why did I start this blog?

Because I refuse to believe there is no cure for this. I refuse to believe that throwing steroids at the problem is the solution. Long term steroid use can be extremely harmful and I am unwilling to live my life masking this problem with drugs. My hands are angry about something - maybe it's something I am coming into contact with, or something I am eating…that is what I need to find out.

I am just starting out on my journey and I am determined to get my hands back. I am hoping this blog will help me keep track of my thoughts and the different approaches I am planning on trying. And I hope this may help others too - I would love to hear from other sufferers!

I have actually already tried a few things and have so many thoughts to get down…I will do follow-up posts soon to bring things up to date.