Through the storm.

I haven't posted in ages, and there is a reason for that. I have been out there enjoying my life. Not stuck at home, endlessly scouring the internet for answers.

The low nickel diet turned out to be a red herring - I have re-introduced high nickel foods without any impact on my skin at all.

So all of my improvement is down to Dr Aron. How I wish I wasn't so sceptical to begin with - his treatment has cost me under £200 total. I probably spent in excess of £2k before this desperately searching for answers.

As it stands currently, I am pretty much in remission. I haven't put cream on my hands for well over a month. I occasionally see the odd blister on my fingers - if I dab on a tiny bit of cream, it usually disappears by the next day. There is no itch, no redness...nothing.

In total, I have used less than half of a small pot of the compound he prescribed me - I easily used more steroid than this when it was prescribed in the traditional way. This has truly been the answer for me. I highly recommend anyone suffering this awful condition to look up Dr Aron's treatment and give it a go. The relief is incredible!

On the mend

It's been a long time since I last posted so thought I would do an update.

This is a positive update, and things have been going well.

Firstly the Dr Aron regime - I am now 3 months in. This approach has certainly helped me, that is for sure. Each flare up I have is smaller, less severe and shorter than the one before. So much so that I have managed to reduce the applications to where I am currently, which is just once a day. So that is good progress and I am happy about that.

Secondly the low nickel diet - I followed the detox diet to begin with and did 7 weeks without touching any high nickel foods. I then decided to try re-introducing to see what happened. I started with a delicious chocolate pudding....I waited for 4 days to see what happened, and nothing did. Hmmm. So then I tried some tomato, cooked into bolognese sauce. The next day I woke with a couple of blisters on my fingers....I thought maybe I had found my culprit, but then the blisters sort of disappeared again. Interesting though, and tomato is something I will watch closely in future. Then I tried some houmous and waited 4 days...no reaction. Interesting - so, my skin has been better since being on the low nickel diet, but given that I am not reacting when re-introducing food, does this mean the improvement is all down to Dr Aron and this is just co-incidental? I am too nervous to re-introduce all high nickel foods so for now I'm going to continue experimenting.

Finally, on the advice on a Facebook post I started using a Black African Shea Moisture soap whenever I washed my hands. It has all natural ingredients and is definitely very soothing. I also notice that if I have occasional itching on my fingers, using this seems to take care of the itch. Not sure its a miracle product, but overall it is a product I like and will continue to use.

Currently I have been pretty much blister free for 17 days which is a total record for me.

6 weeks on Dr Aron

So I am coming up to 6 weeks on the AR now.

On the whole things really have been much better. I have had 3 flare ups so far and am coming to the end of the third. The flare ups were in the same place as usual, but definitely controlled by the creams - the blisters never really erupted on the surface of the skin, and things never progressed to the horrible cracking/splitting phase, they tended to stick around for a week and then shrink back. The itch has been minimal - very slight itching which is immediately controlled by applying the cream.

I am currently on 4 apps a day - 3 apps of the fucibet and then 1 app of the ointment. I do have concerns about the amount of time I am applying strong creams for, and will speak with him about this when I next check in with him. But there are no signs of damage to my skin at the moment.

I also had my patch tests done this week - no new allergies were identified, but bizarrely I had a very severe reaction to nickel, even though the dermatologist wiped the nickel off the pre-prepared disc, because we agreed there was no point testing something we already knew I was allergic too. Clearly there must have been a tiny trace of nickel left, and that was enough to cause a reaction. I try to limit my contact with nickel already, but because of this result I am thinking I need to try the low nickel diet again, and this time do it strictly.

So that is the plan - carry on with the AR and move to a low nickel diet.

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.

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.

Some new options...

So I got my results this week.

My IGg results showed intolerance to cows milk (and goats/sheep actually), egg white, wheat, oats and a few other random things like peas, cumin, walnuts.

My lymphocyte sensitivity test showed my sensitivity to nickel is sky high as expected. I also showed up as sensitive to a range of other substances. One of them was something called 1,4 polyisoprene which apparently is natural rubber. I immediately jumped on this as a possible cause as I wear rubber gloves to wash up, and more recently I wear them to shower to protect my hands from soap and shampoo - what if this is the root cause?!

I immediately stopped using the gloves and after 48 hours things were looking better...I told myself not to get my hopes up as I do quite often have a good day or so every so often, and I didn't want to feel disappointed. I couldn't help it though, and really did think this could be it. I woke up this morning with loads of fresh blisters...argh. I am sure the gloves don't help matters, but it doesn't look like they are the root cause.

So I guess I need to consider the food results. Do I believe I am really intolerant to all those things? Probably not.  But at least it gives me a starting point. I was already doing gluten free when I got the results, although according to the test I am okay with some gluten containing grains, just not wheat. So my plan for now is to carry on being gluten free, and now go dairy free too. Ugh....with Christmas around the corner this isn't going to be fun, but I have to try, otherwise there was no point even having the test.

I have discovered one thing though - sugar makes things worse. I have been pretty good at avoiding refined sugar on the whole, including my very favourite thing - chocolate. But I have had a couple of little treats in the last month and my skin is very very clearly worse the next day. So - not the cause I don't think, but definitely a contributing factor.

Here's hoping that dairy free helps things along....

A new direction

So yesterday morning, I had my appointment at a clinic specialising in allergy, environmental medicine and nutrition.

I met with the doctor first, and we went through the whole history of my DE. He asked me what I thought the triggers might be, and didn't bat an eye lid as I ran through my list of possible contact allergens, food intolerances and candida theories. He agreed with me that any of them could be a possible cause. It was quite refreshing to have a doctor not look at me like I had completely lost my mind.

He outlined for me a number of tests I could have done to begin to explore these issues. As he went through the options, the costs mounted higher and higher - the consultation alone was a fortune, there was no way I could afford to get all of these tests done. I asked him what he thought the priorities should be and we settled on the following:

A food intolerance IgG test, testing for 120 common foods
A lymphocyte sensitivity test - I opted to test sensitivity to certain metals, detergents, fungus, rubber and formaldehyde.

I had my blood test done there and then, and will get my results in a week.

I came home and began researching the tests I had done. The reports were very mixed. Evidently the IgG test is widely criticised by the medical community as being pointless and unreliable. However a good number of people who had the test done report positive changes after eliminating the foods identified.

I went to bed feeling anxious last night - had I just spent several hundred pounds for useless testing?

Today, I have been reflecting on things a bit more. Yes, it is clear that traditional medicine frowns on this kind of testing. But I have been using traditional medicine to treat this for 18 months now, and has it helped me? No.

I guess I stand to lose a fair bit of money if this is all for nothing, but it has to be worth a try. Nothing else has worked so far, and there is a chance that this could really help. I am not pinning my hopes on it by any means - but it is good to have a new avenue to explore.

I'll post my results when they come through - for now it is going to be an anxious wait.

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.