3yrs Topical Steroid Withdrawal

Hey everyone!

Today marks my 3 year milestone of ceasing the use of topical steroids and other steroidal treatments. I won't say I'm healed... not by any means. But I am able to live life comfortably again and without much disruption.

My face and neck area are still my most problematic areas but they have been since the age of about 16. They were also the areas where I used the most creams and ointments so it makes sense really for it still to be over-sensitive and quick to react to potential triggers and allergens.

I'm still on Ciclosporin but I've dropped my dosage to 250mg, down from 350mg, and though my skin hasn't completely cleared up, as it did the very first time I used it, it's still helping me on the days where I do struggle.

I also had a cold sore this past week and decided not to take as much Aciclovir as I usually do, just to test the waters and see if it would spread and turn into eczema herpeticum. Luckily my prayers were answered and it didn't spread at all from my lip. It did however take longer to heal and I kept managing to knock off the scab, but my body finally seems to be helping itself out. My vegan diet still isn't perfect and there are still refined foods in there but I am choosing more whole food options where I can.

I've also started to exercise! This was a huge problem for me for years before I even discovered TSW. I mean I've never been into exercise as I was the fat, unfit kid at school who was self conscious and didn't care for getting hot and sweaty and then having to traipse around for the rest of the day feeling disgusting... but it got to a point where my skin just couldn't handle sweat. I had heat urticaria and it would sting, burn and itch like hell if I so much as became slightly too warm. So I'm pleased to say I can now sweat and do exercise. My skin does suffer sometimes, for example when I go out for a run, the elements are not usually in my favour and I find that the wind can cause my skin to flare and I then spend the next few days with a red blotchy face. This also seems to occur when I go to the gym and I'm wondering if the cause is because I'm being exposed to other people's skin bacteria? However exercising at home then jumping straight into the shower seems to be mostly fine for me. I'm hoping to improve on my skin tolerance the more I do it.

At the beginning of this whole saga, you may or may not remember that I became extremely allergic to cats, despite having grown up with them. This allergy has now diminished drastically and I don't think it's a coincidence that the lack of steroids has helped to rebuild and repair my broken skin barrier that was making me more susceptible to allergic reactions. I'm hoping in the not so distant future that I'll be able to get a cat. More time and exposure is required though me thinks.

Another thing that has happened, that I've talked about before - 3 years ago I had reached a point where I struggled to work my part time job. I struggled to put clothing on, let alone the ability to actually leave the house! I was a complete and utter mess. In July last year I built up my hours to 30 per week. In September I had upped them to 36 and I have managed to work a full time job without a skin sick day for well over a year now. It's staggering to see just how far I have managed to come. I no longer ooze. I believe the last time I had ooze was over a year ago too and that was actually because I had an infection.

This time in 2 weeks I will be at a festival in another country that is significantly hotter in temperature. I could only have dreamed of doing that this time 3 years ago, and finally it can be a reality. I am scared that my skin will relapse but I'll arm myself with antihistamines and the like, wear cooling clothing etc. and just have a bloody good time. I do deserve it after all. I'm not camping though. I think those days of being a smelly mess out of choice are well and truly over. No, we will be living it up in a 4* hotel, so if I do relapse then I'll have comfort. It is truly wondrous though to see how far my skin has come. When the weather became hotter here in the summer I struggled so much with my urticaria but thankfully now it seems to be something of the past. I can also eat spicy food now, stand in front of the cooker with the hobs blaring, and even wear layers of clothing! Miraculous!  

I also generally have more energy - whether this is due to my vegan diet, my uptake of exercise or my body finally having a break from healing my skin, I can't say. But it's bloody good stuff. My hair has also gotten thicker. Back in January 2012 I took Methotrexate which resulted in the loss of my already fine hair which I put down to having scalp eczema. Right now it is the thickest it has been for a long time, though of course my hair has never been massively thick, but I'm no longer embarrassed for having the skinniest pony tail in the world.

I can't remember when I last had to hoover my bed. I used to have to hoover it every single day, multiple times a day, as well as lay on towels to stop the ooze from staining my bed sheets; soak off dried oozy tissues that had hardened onto my face; constantly endure the metallic and pungent rotting aroma of the ooze; the sleepless nights; running a bath at 3am and spending the next 6hrs topping up the water and falling asleep in it just to get some respite... I'm so glad those days are behind me.

Some photographs from my skin hell journey over these past years:

 PRE-TSW

Weird triangle-nose face rash

Weird rash on thigh

Bruising on thigh from over-scratching

Same as 1st image but a different day

DURING TSW

Allergic reaction to staying round mum's with the cats

All greased up with my arms covered to stop scratching and ooze, and red rashes on thighs

A mixture of TSW/ MRSA/ Elephant skin

Swollen eye

During MRSA/ TSW period

The result of bad skin and skin picking compulsion (dermatillomania)

Rash

Eczema herpeticum and Cellulitis of the eye

Red sleeve 

MRSA/ TSW

Ooze

Leg sleeve

Development of Pompholyx

Tummy rash

Skin flakes

More flakes

Tight, hardened ooze and raw open wounds

Thigh rash

The tissue nightmare of constant ooze

Elephant skin

2014 - Thin hair

I have faith that my skin will get ever stronger. I fully accept that it will take years and that I may never truly heal because of the extensive damage that I have bestowed upon my skin, thanks to doctors and dermatologists who have misdirected me in terms of usage safety, but I will get there.

Hope everyone else isn't suffering too much. Happy healing!

32 Months TSW

Hi everyone,

How the time flies! It has been roughly 3 years since I set up this blog in order to spread awareness of severe eczema, then learning of steroid induced eczema or 'Red Skin Syndrome' and in this time I have had a staggering 330,000 blog views. Your kind emails and comments also mean the world to me as I am humbled to learn that my blog has achieved it's aim of spreading awareness and showing people that they are not alone in this. I am truly grateful for the opportunities that have been opened up to me and for those of you who share your own experiences with me to show that I am not alone.

Thank you.

In other news sorry I have been AWOL recently. I work full time now and find it hard to find the time and energy to write on here. But I am still here! Although something scary happened on Christmas day morning. My Google account was 'hacked'. 2 weeks of trying to get hold of Google later, to discover that Google had just decided to change my email address, thus locking me out of my whole account. Cheers Google! Never mind... It's all resolved now!

I bet you're all dying to know how my skin is? Well it still isn't exactly great. My face, neck and arms have recently flared and I think the trigger is stress related. I mentioned that I'm now working full time - it's still within the same company but it's in a different department and I'm learning a hell of a lot. There's only 2 of us in the department and my colleague had a week off after Christmas which was probably the worst time for her to disappear. Needless to say I struggled immensely, and hence the result is that my skin is a bit of a mess. But that was weeks ago now, I hear you cry. Yes it was weeks ago but now that I no longer have the adequate time to heal (read; laze around and do nothing), it's going to take a little bit of time. It is however slightly better today than it was though.

Rashy, dry and wrinkly!

Yes my brows need sorting. But I have some!! & I'm also noticing more baby hairs on my head :)

Splits on my eye lid creases

I am now officially vegan. Shane and I have seen the light and don't want to consume any more dairy - I stopped eating meat months ago. We even enjoyed a vegan Christmas, at both of our parent's houses and it was glorious.

My next step is to try to incorporate more raw fruits and vegetables into my diet, but it is hard to think meal-wise what I can eat for lunch at work. I work from 7am so am hardly in the mood to make meals for work. I've been enjoying the night before's left overs or pitta breads and hummus with tomatoes and spinach but I want to try to get away from bread and consume more vegetables instead.

I've been snacking on fruits - kiwis, blueberries, bananas, oranges and apples but find they don't sustain me for long. I can't take huge portions of these things either because I don't have much time to eat them and we're forbidden to eat at our desks so that's a bummer. I would take salads but the prep thing is the only thing holding me back - I haven't actually tried it but I imagine it wouldn't taste so fresh making it the night before? I don't know.

Breakfast is usually a variation of overnight oats or smoothies so I'm definitely getting my quota of fruits in there. I just need more during the day. Also considering probiotics now. Something I've been thinking  I'd try for ages but I don't want to pay an arm and a leg for them. Does anyone have suggestions of good but cheap ones?

2 & A Half Years Steroid Free

As I hit a big mile stone yesterday I figured I'd better make some time to write a blog post on reaching 2 and a half years off topical steroid creams.

Right now I'm really busy with life. I finally have a full time job which I've been doing since the end of September, with two role changes during this time. I've been going to a lot of gigs and having more of a social life. I can't remember my last day of doing absolutely nothing, I always seem to be on the go right now.

I'm still taking Ciclosporin but no doubt I will be asked to come off it soon, but all of my blood tests come back fine each time so my body is in sync with it. I still haven't lost any weight yet but I trust that when my body normalises I will do. My diet is mostly clean but as always, there is room for improvement and I am switching ever more to a vegan diet.

I have also worn make up for long periods on a couple of occasions without any over-damaging effects. This makes me hopeful that my skin is finally toughening up. My eyelids were one of the worst targeted areas for applying steroid creams and it reached a point where liquid eyeliner would burn and eventually even mascara just applied to the eyelashes would cause an awful reaction. I doubt I'll ever be able to wear liquid liner again but I'm happy enough to get away with mascara. Also my eyebrows look fantastic now.

I've also noticed my intolerance to heat has diminished significantly. I've always had poor circulation in my hands and feet, and also have my lips turn blue, but recently I've noticed that this has switched and I'm much more intolerant of the cold. It got to a point where I was unable to wear layers underneath a coat or jacket because I would come out in hives, but now all I do is layer up because I'm freezing cold! I was a lot better over this summer period of tolerating the warm, but the true test will be going over to a hot country to see how I fare then.

Don't get me wrong, I'm still up and down with my skin but it hasn't prevented me from doing stuff recently and I can't remember when I last took a sick day from work because of it. Onwards and upwards!

Recent photo of me from a friends' wedding wearing mascara, eyeliner and eyebrow pencil.

I would dig out more photos but I can't be bothered to trawl through my phone so this will have to do you for now ;)

Hope everyone is doing well, and as ever I apologise for my online absence.

A Brief History From Memory

Hey guys,

I've got this written in my FAQ but not many people read it so I thought it was worthwhile posting it here. It's just a brief low-down of my eczema/ skin condition journey. Obviously there is a lot more to it and this is from my ever dwindling memory rather than from doctors notes but it is a pretty accurate account of what has happened to me. It's also not the most coherent but helps to give a better understanding of the complexity of my condition and why I have gone on to develop an addiction to the medications - I just used too much! It is also quite likely I've forgotten to include something. But here we go:

• Childhood - Hydrocortisone. Oral Prednisolone (for asthma). Had chicken pox twice in the space of a year.

• 2001/2 - Betnovate scalp lotion (first started to use hair dye)

• 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.

• Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate

• April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate

• July 2007 - Heat induced urticaria developed when on holiday in Spain.

• 2006-2009 - Hydrocortisone/ Eumovate

• 2009 - Was given steroid to treat rash on face, within a few months spread all over my body apart from legs. Used Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Protopic. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck. Was given a cream when I moved to Lincoln but can't remember for the life of me what it was. Was bloody brilliant though.
• Developed severe allergy to the cats at my mum's and was hospitalised a few times when I went to visit, despite having lived with them my whole life!

• Jan 2010 - Immunosuppressant Ciclosporin whilst using steroid creams.

• August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.

• April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.

• Tried Ciclosporin again to no effect.

• Visited Allergist/ Immunologist for another perspective but was just ridiculed and humiliated and told "you just have eczema".

• Tried various diets to no avail.
• September 2012 Tried immunosuppressant Mycophenolate Mofetil to no effect.

• October 2012 Tried immunosuppressant Azathioprine to no effect.

• December 2012 Tried immunosuppressant Methotrexate had no effect but started losing hair so came off it in Feb 2013.

• Light therapy which just made my skin look sunburnt, minus my white nose so knew it wasn't a true burn.

• Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.

• Started TSW May 22nd 2013. "Eczema" spread everywhere apart from my toes.

• Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.

• Went back on Ciclosporin but became incredibly poorly.

• August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking antibiotic Doxycycline for 2 weeks.

• End of August 2013 - Had suspected "TIA"/ "Mini Stroke"

• September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.

• Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.

• April 2014 - Bad case of eczema herpeticum.

• May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)

• Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.

• Ciclosporin helped for a month and then had recurring staph infections from October 2014 - May 2015.

• May 2015 - Last staph infection *touch wood*

• August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.

So all in all we can conclude that I have been given far too much potent topical steroid creams to slather unnecessarily all over myself. Too many round of antivirals and antibiotics for my endless bouts of herpeticum (think we're around the 20x mark now?) and bacterial infections so my gut probably doesn't understand what's right or wrong any more. Far too many rounds of immunosuppressants and just too much in general for my poor old body to handle.I just hope my body will one day forgive me and that all the nutrients I consume will finally have some effect.

2 Years Steroid Free

So the day has arrived. I am now 2 years free from using topical steroid creams.

I am however still suffering though. I'm just going to keep this post short and sweet as I have a lot to do today (see: cake), but I can say that even though I'm still having blips and flares (mostly due to infections!) it has still been the best decision I could have made. I was looking at some of my old photographs and even though I still get blotchy rashes from time to time they are no where near the same in their formation.

That isn't me any more. The rashes are completely different.

I'm also pleased to say I'm no longer suffering from some of the unwanted side effects of topical steroid withdrawal either. For instance I no longer suffer from this:

Elephant skin

Nor this:

Full body coverage

Or this! 

Red sleeve effect

My allergies have distinctly diminished, though still exist only in a lesser form of severity. Life has been slightly easier to endure, though it would still be nice to be given an end point to this suffering. It would also be nice to stop getting so many bloody infections too. That is my main nemesis at present - not withdrawal but infections, both viral and bacterial.

I hope everyone else is well, and I hope I have given others courage to partake in this wretched journey that we should never have to face to begin with.

Best wishes,

Topical Steroid Withdrawal 6 Month Anniversary

I drafted the following post last week however I've woken up today with my eye closed shut with pus and the telltale signs of eczema herpeticum. I'm long over due I guess...


So next Friday will mark my 6 month anniversary of being free from using topical steroids. It will also be around 3 months of quitting immunosuppressants too.

A lot of changes have been happening over this past week. Changes I am so happy about and feel incredibly grateful and optimistic that next year won't be so tough. Next year surely has to be a good year!

I've been taking small steps to be more social, whether this be grabbing a hot drink with fellow colleagues after work, or getting out of the house that little bit more for a browse in the shops, or even picking Shane up from work, I'm doing it and it feels great! I've been making more solid plans such as arranging to attend my work's Christmas party and even paying in advance. For how I've been over the course of this year, I wouldn't have even dreamed of paying cash up front for an event just in case I needed to bail out but I do feel very optimistic that I'll be able to go regardless.

I've now been attending my shifts at work 4 times a week since my last bout of illness in the first week of September. I think this is an amazing achievement as I was off so often that my attendance percentage was sky high and I'd come to the red sheet of warnings far too often than I care to. Obviously my managers understand my condition so knew it was not my fault for needing to take so many sick days but it still stings to sign that final warning sheet, where normally 3 strikes and you're out is the usual procedure. My hours have been creeping up and I even asked if I could take on another day whilst it's the Christmas period. Luckily because it is only a part time job my longest shift only requires me to be there for 6.5hrs. The rest of my days are usually only 4-5hrs, if that but it's still amazing progress!

On Wednesday I probably reached my biggest achievement of all. I was sitting in my craft room actually crafting! When we moved to this house one of the requirements was for me to have a room dedicated to all of my craft things (saying I have a LOT is an understatement!) and it's only taken me a year to be able to use it for its designated purpose. To also further this, the fabric I was using was shedding an awful lot of fibre dust and did I react? No! I'm literally over the moon <3

Also I've been able to start doing a bit of exercise. I am so unfit it is ridiculous! For years now I have been prisoner to the awful heat induced urticaria which is brought on by exertion, meaning exercise was nigh on impossible. Some how I've been able to do cardio, albeit not for long because I get so out of breath(!), but my hives appear to have been kept at bay. Sweating is still a little bit of an issue but I'm not scratching myself frantically as I would have been previously. It definitely feels a lot more tolerable.

I'm so, so happy that my life is slowly but surely getting back on track. Next year I'd like to achieve quite a lot before I hit the big 25; such as going abroad to maybe Norway or somewhere lovely I've never been, finally obtaining a full time job, moving away from this city, starting up a craft based business and finally being able to properly say thank you to Shane for supporting me and being there in my toughest times. Without him I really don't know how I'd of survived.

Life is getting easier.

Eczema vs. Weather

I just can't seem to win when it comes to what my skin can tolerate. With the weather patterns the UK gets, be it the cold, wind and rain or the hot, dry heat my body cannot cope! I just cannot handle the extremities of the two.

The majority of eczema sufferers I speak to say that their condition worsens in the colder months and becomes manageable or even restored back to its former glory in sunnier climates. This has never been so for me. I have battled with both the hot and cold - my skin gets no real respite all year round.

Winter vs. Summer

In the summer I am faced with prickly heat type rashes that are eczematous in formation and find myself suffering profusely because I just cannot get cool. These rashes can also follow on into colder months when wrapping up warm to go outside and  to protect the skin from the cold climate is refuted by the extreme heat of exertion or stepping inside a warm building such as a shop. The inability to dress appropriately for every possible temperature regulated scenario proves for a very hectic skin regime indeed.

I find that not only do I suffer from these rashes in the milder months but my skin will also crack and bleed due to the lack of moisture.

Going through Topical Steroid Withdrawal has certainly changed the way my skin acts for the better, but in some ways it is worse because of the unknown ways that the skin reacts to adjustments in temperature and humidity.

As the winter weather begins to settle itself I see a definite change in the way my skin is reacting. I have been attempting to go moisturiser-free as I found this to achieve better effects overall, yet now that the country is faced with harsh winds and bitter cold days I am finding that I can no longer cope with being so dry! However as I mentioned in a previous post, applying moisturiser to my face is causing me to breakout in small, itchy pustules- Argh!


How does your skin react to the extreme climate changes?

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 :)

Month 4: Noticeable Improvement

So this Sunday just past I reached the 4 month mark of withdrawing from topical steroids. Things are going pretty grand. My skin has been pale for the past fortnight now which is always fantastic to look like a relatively normal human being. However I am still periodically becoming covered in pus filled bumps which I can only assume is the MRSA still rearing its ugly head. It appears to be on a daily basis but the spots seem to disappear just as quickly as they arrive. I've found to try to combat them, as I mentioned in my previous post, is to not moisturise. I think this stops the bacteria from spreading because the moisturiser typically makes the skin hotter and thus inhibits bacterial growth.

I did see my derm nurse this past Friday and I've been given a further 3 months course of the antibiotic which appears to be relatively safe in terms of the side effects etc. It's given to those who suffer from acne and is also used to treat malaria, sexually transmitted infections and is also used for those who travel to prevent them getting nasty infections like ticks and gut rot... some nice trivia there for you. I think MRSA is one of those ones that can take quite a while to overcome so I'll just sit it out.

I'm sorry for the poor quality of the images. I think my camera lens must be covered in grease, as is everything in my life. Anyone else with a skin condition who has to use moisturisers will understand the annoyance of this.

Full length image. Yay looking pretty pale.

I keep scratching my arms, especially my wrists and hands which is a bit of a nightmare but the skin here as you can see is very dry and dryness = itchiness. Can't win can I?

My legs are still really horrible, covered in scabbing which gets soooo itchy! You can see at the top where it's a bit bumpy too due to over-scratching. You can also see the "sleeve" on my feet. But it's not so much due to Red Skin Syndrome, but more so because of the discolouration that has been caused from scratching too much.  

It has spread onto the tops of my feet, just as it has on the tops of my hands. It's so frustrating because those were the two places where I never ever had dermatitis during this journey.

Tummy has a few dots that keep filling with pus now and then but otherwise is really pale and not bothersome.

As mentioned in my last post - I have eyebrows! I've never had proper thick eyebrows and these are rather like my Mum's where they're sparse yet thick in size.

& I thought I'd include my face for good measure. Looks relatively smooth and pale :)  and no Photoshop involved! and my hair is also thickening slightly. I haven't had really thick hair since around the age of 12 so I don't expect miracles but this is certainly better than it was at the beginning of the year.

Tomorrow I have my MRI scan to make sure everything is alright in that head of mine after the suspected mini stroke I had last month. I've never had an MRI scan before so I hope it's not too scary.

Happy healing everyone!