Photo of Eczema Skin 5 Months Topical Steroid Withdrawal

I've had a few people ask how I'm doing lately so I figured I'd give a brief photo update.

Overall my skin is remaining white, it's just very dry and does go the palest shade of pink after rubbing on my face. I'm covered in tiny little wounds from scratching but they're so tiny and it's really just from the dryness that they've occurred. My skin is thick enough now that it doesn't cause weeping when I give it a good old scratch, just tiny nicks here and there that scab over and I naughtily pick them off.

 You can see the dryness is predominantly on my eye area and cheeks. My lips have been horribly dry too. You can also detect the skin flakes on my t-shirt. Yum! Oh and my eyebrows are becoming a little bit sparse again but I reckon that's because the skin isn't moisturised enough to hold in the hairs so when I have a scratch because they're so brittle they fall out easily.

Closer version

Closer side view

Mostly white tummy/hands except for some naughty scratching which has created the aforementioned small scabs. I haven't had matching hands for a while now so this is nice to see. My hands were also covered in hard skin last month which took ages to get rid of and although they're dry as a bone the skin feels relatively normal.

There still isn't much difference occurring in my legs. I just can't leave them alone :( I'm so bad. Telling the world about my picking habit obviously did nothing mentally for me. If it wasn't so cold right now I'd parade around in shorts so that everytime I caught myself in the mirror I'd feel ashamed.

But there you have it, a mini update from me! I think I attribute the dryness of my skin to the cold weather. It has been extremely windy and in fact we were down in Portsmouth this past weekend when the winds were a good 30mph. That obviously has done nothing to revive my poor skin.

Hope everyone is well :)

Topical Steroid Withdrawal: Allergies

When my eczema first began to worsen and become a full body problem I was sent straight to a dermatologist to determine what had  caused this to happen after years of only having had dry and sensitive skin with the occasional rash. After being given prescription after prescription of stronger topical steroid creams, nothing was helping to ease the issue. As the skin first showed signs of inflammation and eczematous skin on my exposed areas (face, neck, chest and arms) it was decided that my problem was down to environmental issues. Blood was taken from me to determine what allergens were prevailing my ailment and the results came back as severely allergic to cats, dogs and dust mites.

Now, the thing that puzzles me most is that prior to this time I did not react severely when faced with any of these allergens. There were cats present in our household before I was born which have still remained to this day (not the same cats as that would be crazy having a cat that was older than 24!) as we are a family who are very fond of them. In a similar vein dust mites were the highest rated of all the allergens which is humourous given that I spent 3 years of my teens working as a cleaner where high levels of dust was present.

My Mum's beautiful mogs

Sure, prior to my eczematous epidemic I may have been a tiny bit allergic to these things, with the odd runny nose and itchy eyes, but this became disastrous. I suffered all summer long with little respite until I left home to attend University in the September, where my condition eased itself to an extent and life became "manageable" again. (Life with eczema is never manageable as even when your allergens are diagnosed the beast still rages on for no real reason, other than "it just does"... or so the specialists like to tell me.) Getting rid of the cats was not an option, and in fact I wanted my Mother to keep more as I didn't want her to be on her own and cats are my favourite animal afterall. When I returned home for a visit in November/ December time, just a couple of months later, all hell broke loose and I was hospitalised with a severe allergic reaction.

This continued until I was given Ciclosporin the following year, which I have previously detailed in this post. When I was forced to discontinue the drug I was back to square one with my allergies. They were still severe and I had to stop visiting my Mum at home; my home. I had to change my position at work; the warehouse and shop floor were too dusty and I was flaring all over the shop, quite literally!

Recently all this has changed.

When I stopped using the topical steroid creams in May of this year I had no idea what would be in store for me. A question on ITSAN's FAQ page struck me, it had stated that:

"Q: Why am I allergic to things that never bothered me before?


During topical steroid withdrawal, your body is very sensitive. After withdrawal, it will return to normal. Allergy testing during topical steroid withdrawal is inaccurate because your system is hypervigilant and reacts more than it normally would."

If this was true it could mean that in the future after withdrawal my life may not be so constricted. I might be able to actually visit friends and family who own pets, be able to carry out routine house cleaning, and generally return to a more normalised lifestyle. It also confirms that my allergies that were only ever mild prior to the eczema break out became severe because of the use of topical steroid creams.

Miss Kitty's blog post entitled "I am not allergic to cats" gave me further hope. Maybe one day I will even be able to own a cat myself.

See! I never used to be so allergic

Last month I visited my Mum. I figured I would probably have a flare so prepared myself for the worst. My skin didn't flare up and I didn't even take my asthma inhaler once! What was this madness, a crazy fluke?! I'm beginning to wonder what is going on.

This week at work a maintenance man took apart one of the tills that had been freezing through transactions to find that it was chock-a-block with dust. I didn't think to tell him that I had allergies and just backed away a bit as he blew it literally everywhere creating clouds of dust that hung in the air and choked me. Do you know what? I didn't need to take my inhaler that evening though my skin did flare later on but I think it was actually more due to the fact I was so dry after work as I haven't been moisturising.

And just yesterday, the very thing that prompted me to type this post... I went to a friend's flat who has the fluffiest cat in history that malts like nothing I've ever seen before, cat fur EVERYWHERE! They'd forgotten to hoover before my arrival, but it didn't matter and it isn't something I'd expect people to do, why should they? Whilst I was there I think I only took my inhaler twice, sure my nose was running by the end of the day and I started sneezing but the fact is I was there from 8am until 5pm. That's an awfully long time to spend with one of my allergens, especially one so fluffy as this beautiful mog.

The fluffiest of mogs! (Image courtesy of The Retired Bridgeburner)

I will admit that I couldn't stop sneezing all the way home and couldn't sleep last night because my nose was blocked but considering I used to literally have to step into the same room as a cat and end up in hospital with a severe full body allergic reaction, just from having it look at me is saying a bloody lot.

I think withdrawing from the medication that was supposed to treat the eczema is the best thing I could ever have done for myself.

I truly do.

Rambling Ramble: 5 Months TSW

This coming Tuesday will mark 5 months off topical steroids. :)

Not a great deal has changed in the last couple of weeks. I'm still getting the scabbing on my legs and I just can't leave it alone because I'm a silly thing! I also have patches on my arms, torso and back that I keep having a go at but hopefully they will begin to clear up again soon. My face is also a source of annoyance. For a good month now it has been pale albeit dry but definitely vastly improved, this past week I have had small pustules popping up all over my face again, just like how it did during the MRSA outbreak. I'm still taking the antibiotics for it so hopefully it will calm down soon. I'm not sure if these spots are occurring because of the said MRSA or because I started using moisturiser again.

I've also used it on the other areas to stop the dryness and they appear to have become even drier and itchier. There is a lot of talk floating about right now about the effects of paraffin based moisturisers and how they affect the skin barrier and in turn cause a secondary withdrawal. To me, it all makes sense, as paraffins are synthetic products so it is no wonder that our bodies reject its application, but it is then trying to find a natural moisturiser that will work that is the next step to undertake.

A few months back I was sent some natural products to try but was reluctant to give them a go because that was around the time that I was suffering from head to toe and kept being infected with herpeticum. Now I think I will try to give them a test drive.

In other news I went to see my derm nurse this morning for a catch up. I am pleased to report that I don't have an appointment for another 2 months! This is huge as obviously I was seeing them every 2-4 weeks to monitor my progress, and going in between visits when I was particularly bad and couldn't wait for my scheduled appointment. Prior to today I hadn't been to the hospital since Friday 20th September. Massive achievement :)

As ever, I hope everyone is having some respite from the evil TSW beast!

xx

My Eczema Story In Pick Me Up Magazine

Hey guys,

Just thought I'd let you know that I'm in the most recent issue of this week's 'Pick Me Up' magazine which came out yesterday. It's only 68p so grab a copy!

After having written the newsletter for Talkhealth last month I was approached by Pick Me Up to include my story in their magazine. A proud moment! Hopefully my condition will strike a chord with many other eczema sufferers all over the UK and in turn they may look into Topical Steroid Withdrawal if it is the next path they need to take.


*for obvious copyright reasons I'm only showing a small thumbnail of the magazine to show that I have been featured.

Eczema & Dermatillomania

I must start this post first off apologising that my posts are becoming less and less, but it's because I feel as though I don't have much to talk about recently. My blog started off in its infancy as a blog to inform people about my severe eczema and to help them, and other fellow sufferers, relate to the debilitating nature of the condition. As time went on I found out about Red Skin Syndrome and I was getting illnesses pop up far too frequently for my liking and so this here blog took the form of a journal.

Not a great deal has changed since my last entry regarding my skin, it is still rather pale, however the scabs on my legs have dramatically spread and look even worse in their appearance because I just can't leave them alone. This is why I would like to turn to the subject of Dermatillomania.

Dermatillomania is described as an obsessive compulsion of skin picking. It is much the same as Trichotillomania (hair pulling) where the compulsion becomes too much and despite knowing the consequences, such as creating ugly, raw and even scarred, disfigured skin, it just can't be helped. It brings a sense of relief to pick at the skins irregularities and is even a pleasurable experience.

I, myself have been picking at my skin since the beginning of my severe eczema phase (Jan 2009). Prior to this I had strange habits such as cutting individual split ends from my hair for hours and hours. Skin picking is not a habit that can be easily broken, much like scratching the all-consuming eczema itch. Having eczema primarily means that I will always have scabs to pick and dry flaky skin to attack with tweezers, it's just part and parcel of the condition. I know I won't be alone in my skin picking habit, as I know of many others with eczematous skin who do the same.

I wanted to talk about this because I am having a lot of trouble breaking the habit of picking at the scabs on my legs. Skin picking has always been something I've done as a way to relax and is one of my coping mechanisms. I have been known to spend hours and hours just picking and tweezing away at my skin and I even have urges at various points in the day to just go home and pick. When I'm out away from home there's always the thought in the back of my mind about how I will go to town on my skin later on. It's a bit like a dirty little secret because I like the experience of just sitting there picking off all the dead and irregular skin but if people knew what I did, and I have told some of my friends, they would be horrified and disgusted.

I realise how I'm basically destroying my skin and making it even worse because it just isn't being given the time or the means to heal naturally but I just can't help myself. It's like an addiction. It has been compared to self harm because you're fully aware of what you're doing to your body but the compulsion for relief is just too much.

I've decided to publicly create this post because I feel the more people who know about this, the more I may feel embarrassed that I am causing myself harm. I've been taking measures to not use tweezers on my legs, to keep them covered up, and if they do become itchy to allow myself to scratch if I have to just to quell the itch, otherwise it just becomes all too consuming and there's no stopping me. I will literally go to town taking every single scab off, making it bleed and produce proteinaceous fluid so that it can form new scabs. Sadly if scabs are picked off too much it can cause scarring and larger areas to form.

I said in a previous post how one of my life goals was to be able to freely wear shorts next year without tights or leggings. Let's hope I can leave my legs alone to actually fulfill that.

Does anyone else suffer from this annoying little quirk? Please comment and let me know :)

Painting Over The Walls To Hide The Cracks

Shane used a brilliant phrase in his post last month entitled "What If Everything You Thought You Knew Was A Lie?" describing how Doctors tend to paint over the cracks rather than fixing the problem to get to the root of the cause.

From my own personal experiences I come up against this all too often. Earlier this year when I decided to stop using topical steroid creams and immunosuppressants, I was met with a tonne of aberration from my dermatologist. Even now, after switching derms I still have a stand-off battle when I tell her I'm still not using the steroids, it's almost with spite and malice that she retorts; "Oh of course you're not." as she then rolls her eyes to the back of her head. What she seems to be failing to understand is that I'm not steroid-phobic. I genuinely feel that the treatments I have been given over this 4 and a half year period have done me more harm than good. I'm now worse than I ever was and I can only think to put it down to the prescribed medications after finding nothing other than cats and dust mites that I am severely allergic to (which only happened after my period of stress - I was never that allergic).

When I told my former dermatologist of my findings regarding Red Skin Syndrome and Topical Steroid Addiction he seemed happy enough to want to find out more at my next appointment, but I now realise he only agreed to read them to keep me sweet. The next appointment came and he didn't even bother to look at Dr Rapaport's papers. He told me they bore no credibility. Yet even when I argued that he should take a look at my own blog and read up on the blogs of fellow sufferers who had come out the other side cured he told me that he didn't like all this "technology business" and didn't use computers.

Erm what? You're a doctor living in the 21st century. It's basically your right to use a computer to find out what's going on in the current world!

That is when I decided to switch to seeing another derm, who again seemed to be on my side in the beginning, but as you can see from my previous entries, she turned out to be just as sour. What is their problem? Sure I can understand that it must be somewhat frustrating to be told these creams that you've been telling your patient to apply liberally are in fact the cause of the problem, but to outright dismiss the idea when all other treatments have been exhausted? I think it would at least be worth a try, no?

I realise that this isn't all the fault of doctors however, as Shane stated in his post, there are some scary convictions relating to dermatologists particularly regarding why they chose the specialism; not because they have an interest in the subject but because of the healthy pay packet and more time off. That kind of heralds part of the reasoning as to why they seem to stick so vigilantly to their treatments of topical steroids and immunosuppressants. If you're not bothered about your patients with recurring eczema that only gets worse why not just chuck something stronger at it instead of addressing the cause of the problem. It makes me angry.

Sure, there are some derms out there who do care about their patients and not just from a medical perspective, they do genuinely care for their well-beings (look at Rapaport, Fukuya, and all other red skinners who have been provided with love and care)... however I don't think I've found one for myself yet.

I'm not disputing the jobs of the doctors as it must be really frustrating to see your patient failing to respond effectively to treatment, but at the end of the day us patients do rely on them to give us some form of hope. Afterall, they are the one that have done the years of medical research and have the experience of treating other patients with similar conditions.

On top of all this there's the whole idea of the pharmaceutical companies making their mega bucks by distributing their medications which are initially approved by the FDA, but later are found to cause deaths and other life-threatening illnesses that weren't listed on the insert. This is then decidedly covered up as they would lose a lot of money and it creates more media hype and stigma against them. To the average Joe, that's you and I, we have no right to know what we put in/ on our bodies. As long as the big guns are raking in money then the world can go round.

Sources:

• http://www.collective-evolution.com/2013/09/04/major-pharmaceutical-company-wants-to-block-access-to-clinical-trial-data-of-their-drugs-in-fear-of-profit-loss/#_
• http://www.bloomberg.com/news/2013-03-11/abbvie-sues-eu-regulator-to-block-clinical-trial-data-release.html
• http://www.pharmalive.com/transparency-abbvie-sues-ema-over-trial-data

It truly makes you wonder if anyone has your best interests at heart in wanting to get better or is life just one big scam? Ooooh deep!

Also as an aside: don't you find it ironic that the inserts for many of these prescribed medications state that side effects can consist of skin rashes, itching, hives, allergic reaction, dry skin, edema and so on and so forth? Just a tad ironic that they won't give credit to steroid induced eczema yet the symptoms are often listed as side effects. How would you know if it was a side effect if you're already using these treatments to cure the said symptoms listed...?