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!
Monday 28 August 2017
Friday 2 June 2017
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.
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.
Sunday 9 April 2017
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.
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.
Thursday 9 March 2017
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!
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.
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.
Sunday 12 February 2017
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.
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!
Wednesday 8 February 2017
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 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??
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