National Eczema Week: What if everything you thought you knew was a lie?

This week is National Eczema Week (14th September - 22nd September). To mark the occasion I will be posting a series of posts every day of the week, either from myself or from my partner Jenny. Today's post is from a new one from myself on the subject of Red Skin Syndrome and how sometimes the correct answer might just be the simplest one.

What if I told you everything you thought you knew was a lie? That North was South, green was actually a slightly purply colour, Mullets were terrible haircuts and that the medication you have been using to treat a condition has in fact made you worse and forced you to develop a worse condition that what it was being used to treat.

You would be confused and frustrated right?

3 and a half years of Wild Goose Chases

The above photo was taken by Jenny on her latest Dermatology appointment, it represents just three and a half years of hundreds of hospital appointments, test results and general notes since she moved to Lincoln. In just three and a half years of living here she has managed to have a file big enough to hold open most doors. Yet despite the supposed wealth of information between those folders whilst Jenny has been living in Lincoln her condition has got much worse, rather than better. Diagnosis' have been made, medication of increasing strengths prescribed but whilst things may improve for a brief period of time, the symptoms would soon come back and often much worse.

As with most things in life there comes a breaking point where something happens that either pushes you over the edge or forces you into action. I've mentioned this plenty of times in previous posts before, but this whole fundraising effort this year was born out of such a moment, when we had both reached, what we thought at the time, was an all time low with her health. At the beginning of the year I convinced Jenny to start blogging about her condition, to help me with my quest to raise awareness this year but also to help herself and others like her.

The response was almost immediate, friends who had no idea of the true extent of her condition were taken aback and more importantly, strangers reached out to her as they realised that they weren't alone. As the weeks went on one term seemed to crop up again and again from readers, 'Red Skin Syndrome', until it eventually became deafening. In short the suggestion from numerous readers was that the condition that Jenny was suffering from wasn't Adult Atopic Eczema, but rather 'Topical Steroid Addiction', meaning that her skin was addicted to the very creams she had been liberally applying in a quest to get better. I guess one way of looking at it is to think of it as the medical equivalent of painting over a crack in the wall. Sure, the crack will 'disappear', but it's not actually fixing the problem and it will continue to get worse until it is much, much more difficult to fix. The solution was to simply stop applying these creams and then with time you would be 'cured'. This seemed like being handed a 'golden ticket', after years of suffering could the answer really be that simple?

Not quite. The 'withdrawal' process that all those who stop using steroid creams go through is horrific and can last anything from a few months to a couple of years. When we first came across the term we spent hours looking through some of the sufferer's blogs both shocked at the pain that the people were going through and comforted by the fact that without fail they all described the same set of symptoms which matched up to Jenny's. The recurrent symptoms that we found included: red burning skin, intense itching, dry flaking skin, oozing skin, rashes/hives, difficulty regulating body temperature, exhaustion, insomnia, loss of appetite.

To find out a more about 'Red Skin Syndrome' including the science behind it, how to spot symptoms and the 'treatment' check out the brilliant video below.

Or for a more relaxed, Northern and comedic approach watch Jo's (Miss Kitty Fantastico) video on the history of her condition and treatment below.

Without even trying to dig too hard I was able to create a list of the following red skin bloggers:  Pinklikeabeacon, A Little Itchy, Topical Steroid Withdrawal (Juliana), Topical Steroid Withdrawal (Louise UK), Topical Steroid Withdrawal // Red Skin Syndome, Stopping Topical Steroids, Get thee hence Eczema, Living With Eczema, Red Skin Recovery Diary, The Open Door, Skin of Rose, A Steroid Free Life, No More Steroids, Miss Kitty Fantastico Defeats Eczema, Steroid Free Skin, Healing the Red, Journey to Curing Eczema, And the Earth Shook, Eczema Excellence, Going Natural Mum, Eczemancipated, Tomato Skin Girl, TSW Journey, The Boy, the Greek Fire and me, Laleizel, Eczema or Not, Boy vs Self, Topical Steroid Withdrawal Journey, Steroid Cream Withdrawal, 35 Years of Hell, Itchy, Red and Miserable, This Itchy Life, Eczema in Hong Kong, Eczema Struggles, Elizabethssite, Eczema Healing, Scratchy Monster, Topical Steroid Addiction and Cure, Topical Steroid Withdrawal Sucks and Curing Red Skin Syndrome.

If so many people are willing to put themselves through such pain you'd like to think that there is something to it, at the very least it shows the desperate situation that many eczema sufferer's find themselves in to even entertain such a radical treatment. Earlier in the year we decided we had enough evidence to begin the 'withdrawal' process, Jenny's health wasn't getting any better after exhausting all other types of treatment and medication it seemed like the only thing left to try. The decision was met with some scepticism from friends and family as it goes against the 'expert knowledge' of the vast majority of dermatologists out there but in truth it really felt like we had no choice.

"Inside every cynical person, there is a disappointed idealist."

Over the past few months I have come across some (un)healthy scepticism about the motivations of doctors and the mysterious 'financed by corticosteroid company(ies)' shaped shadow hanging over them, but this is something I'm neither prepared or educated enough about the situation to pass comment on. Maybe it is because I'm an idealist but I'd like to dismiss such 'crazy talk' as just that, but in truth I am also as cynical as they come.

I can't help but get angry when I read about how doctor's choose to specialise in the dermatology, not because they have a genuine interest in the subject, but because of the perk's of more time off or better pay, even if it means specialising in something that 'isn't important'. There I go, getting all angry and cynical when I said I wouldn't.

Jenny's decision to stop using steroid creams and go against the advice of her dermatologist was naturally a bit of a confrontational issue at her hospital appointments. In fairness I imagine there is nothing more frustrating for a doctor than the patient trying to over diagnose themselves, when true answer is much simpler. Also for a dermatologist to be told that the reason that their patients are ill and/or getting worse is because of their incorrect diagnosis must be hard to take, and I imagine that is why so many seem unwilling to listen. It can't be easy to be told that you are the reason someone has been going through years of suffering. Telling a dermatologist that their 'magical steroid creams' aren't actually able to make their patients better but are the sole reason they are getting worse is akin to the reaction when Christopher Columbus claimed the world was round*.

*OK, OK, I know the proof that that actually happened is flaky at best (non-intended eczema joke), but I'm making an analogy here so bear with me.

Even though Jenny went armed to her dermatology appointments with the published papers from Dr. Rapaport, the Doctor who termed the condition 'Red Skin Syndrome', these were dismissed outright without even bothering to read them. When Jenny even suggested checking the blog that she had been writing for the majority of the year, or even those from other fellow sufferers it was disregarded as the Doctor didn't like using computers.

As someone who has heavily integrated technology into their life it always confuses me when others are so unwilling to embrace technology into their life, it is however completely acceptable. However when a doctor almost outright refuses to use technology when their job pretty much demands it, I find that very frustrating. If all doctors had the same approach to technology and trying out 'radical' new treatment ideas we would still be drilling holes in people's heads.

Got a headache?
How about I drill a hole into your skull to make you feel better?

Something I feel that doctors almost seem to forget how much patients with a chronic illness rely on them for just that little bit of hope and how they can hang on their every word. As I've said I don't envy the difficulty of the jobs that doctors face on a daily basis, but, and probably simply because of how often Jenny has to go to hospital or the doctors, the number of times she has had some laughable and at times shocking experiences is crazy with misdiagnosis.

Personally I'm still a little bit sceptical about 'Red Skin Syndrome', there is always the danger of convincing yourself that something makes sense because you are desperate for it to. After years of numerous different diagnosis's, cycles of different medication and scores of hospital trips, we are both just desperate for any hint of a cure, no matter what it actually means.

It would be devastating to put so much emotional investment into a cure that could turn out to not exist, so for the sake of coping with the situation afterwards should after months or years of suffering Jenny's health not improve I have to remain slightly sceptical.

GUEST POST: Immunosuppressants

Sorry for the gap between posting, my mum came down for the weekend so it's been nice to spend time with her seeing as I rarely do get to see her because of my cat allergy.

I thought today I'd talk about immunosuppressants. This medication is only administered to eczema patients if the eczema is unresponsive to typical treatments such as steroid creams, antihistamines, oral steroids and protopic creams. The only thing about immunosuppressants, and the reason they're considered as a last resort, is because they dampen the activity of the immune system and are thus able to suppress the inflammation of the skin. Because they dampen the immune system this means that you are much more susceptible to side effects and infections... as I definitely found out.

I was first put on a course of Ciclosporin in 2010 after waiting for ages to get in to see the dermatologist here at Lincoln. These tablets can take up to 12 weeks to kick in, but for me it only took a matter of 2 or 3 days. My skin became completely and utterly transformed! I could go to the gym, I could do practically anything without my urticaria flaring. I even went home to see my Mum and managed to spend a night in my old bedroom. My skin didn't flare at all but my asthma was unbearable so I knew that would have to be the last of my overnight visits, sadly. But what you have to understand about my cat allergy is, even if I spend a little bit of time near them, or in a house they inhabit, within the next hour or so my skin would flare and my wheezing would become uncontrollable. Any longer, and it's a trip to A&E sadly :(

I remained taking these tablets for approximately 1 year, being monitored fortnightly for blood tests and my blood pressure. Some of the side effects Ciclosporin can cause include damage to the kidneys, cancers, high blood pressure and swollen gums. I did notice that my gums swelled a little and it was after a year of taking the medication that my blood pressure started to rise so I was taken off it.

Azathioprine was the next one they tried me on which did absolutely nothing for me after 12 weeks of being on it. My skin became bad because it wasn't being helped as much as it had with the Ciclosporin, so that was also stopped. They put me back on Ciclosporin at a slightly reduced dosage but it just didn't work for me as it had before. I was distraught. They kept me on it for over a year in the hope that it would start to kick in, but it didn't.

So that brings us to Summer 2012... where at the start of the year I was so ill I contracted the likes of eczema herpeticum and was put on steroids and antibiotics a fair few times as an attempt to control the eczema flares. We were also living in a house that was very damp and it didn't matter what we did, the mould would keep coming back, so enough was enough. I begged my dermatologist for another option. He wanted me to try Methotrexate but to me, the symptoms for that some how seemed so much more frightening than the Ciclosporin and Azathioprine, probably because it is only 50% effective in eczema patients... so we came to the decision to try me with Mycophenolate.

Mycophenolate didn't work either, but then I was only taking it for just over a week. In this week my health had become so bad that I had contracted eczema herpeticum AGAIN and had reoccurring tonsillitis. I also developed hand eczema at this point too. I really was in a low place.

We decided enough was enough with the damp and mouldy house we were living in, as obviously that wasn't contributing any good to my health, and the landlord was seemingly refusing to fix it. We moved into a newer, larger house in the middle of November which although I haven't noticed an incredible difference, is at least permitting me to go to work, which I couldn't in the months between September - November.

It was then in December that my dermatologist won me over to Methotrexate. Methotrexate is usually most used for conditions such as Rheumatoid Arthritis, and I actually know of a couple of people personally who do take it for that and don't have any problems. It was also initially used for cancer patients and it's function is to slow down, or halt the division of cells to reduce inflammation. By January I was beginning to lose quite a lot of hair and it was really upsetting me. I was losing daily what I would probably brush out in a week, so off it I came.

I'm still losing a significant amount of hair even now, and it's been around 3 weeks since I stopped the treatment. If anyone else has experienced hair loss from MTX how long did it take to slow down? I had to get quite a lot of hair cut off as a result because it had just become so fine and lank. I fought back tears when it was getting cut because as he handled it, I could see it was even worse than I thought.

So yes, that's my take on immunosuppressants. I would absolutely love if Ciclosporin worked again. Though perhaps it will do in a couple of years, who knows? Though I admit I don't miss taking the tablets. They're an inch long in size and stink of yeast!!

There was a picture floating about ages ago showing their size on a tape measure, but you can probably get the jist from these!

I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx