Monday, 23 November 2015

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.

Tuesday, 29 September 2015

Month 28

Hi everyone, I reached month 28 a week ago so figured I'd best do a catch up post. It seems my posts are becoming more and more scarce as time goes on. That's because I haven't really had any major turning points to speak of. I'm still trundling on, however my social life is coming back and I'm practically on full time hours at work. I've started attending the gym, to address the weight gain, and apart from a few blips I'm quite content presently.

I went to see the dermatologist the other day which I thought was going to lead into the monotonous fight that usually occurs but I was told as long as I was aware of the effects, and was regularly monitored, I could stay on Ciclosporin for the present. That is fine with me, as it seems to be actually working right now. They did mention a drug break though which I will have to eventually do anyway but for now it's all good.

Recently I've been watching more and more documentaries and videos on veganism and am really hoping to make the switch soon. My partner is on side with me as he would like to be healthier overall too. I got a juicer for my birthday, which I'm yet to use but I'm hoping it will yield good results for me. If anyone knows any good recipes, that don't contain celery or cucumber do leave a comment!

Here are some photos from Friday.

Thought I'd take a couple of close-ups to show how wrinkled my skin has become around my nose/cheek area. Thanks steroids (& over-scratching!).

Neck/chest looking good

Also thought I'd include this one of me giving this woofer a good old stroke. Not often my skin behaves with furry ones!

The rest of my body is remarkably clear. Although I now seem to be having some other health issues with my stomach and randomly vomiting so my skin is a bit worse for wear this morning. Oh well.

Hope everyone else is doing good!

Thursday, 20 August 2015

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.

Wednesday, 12 August 2015

26.5 Months TSW

Just a quick update from me! I'm still in my plateau at the moment. My skin isn't perfect but nor is it really troubling me. I flare from time to time but it has been mostly manageable.

Whether it be a case of the fact that I'm still on Ciclosporin, or purely just coincidence, the summer heat has been much more tolerable and easier to endure this year, though I do actively avoid getting hot and bothered just in case I induce an unwanted reaction.

Yesterday I came back from a few days away staying at a hotel and don't seem to have caused much damage to myself. Usually I end up scratching myself to bits when I stay elsewhere - whether this is down to a different environment or just something in my mind I don't know but I left unscathed and didn't keep the boyfriend up all night with my violent scratching episodes.

I do still have areas of blotchiness/redness but they really don't bother me right now. I just wish I could wear make up without the fear of my skin reacting.

Here are a couple of random unflattering photos I took in the car.

I do hope everyone else is doing good.

Monday, 6 July 2015

Topical Steroid Withdrawal Month 25.5

Hey guys,

I'm now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I'm still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.

About that though, the heat I mean. I've done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn't even get dressed because my skin was that awful. This year, I'm sweating and it's still horrible and my face and neck have gone rashy but it isn't anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven't used the fan to help cool down. Shane has, because it's been ridiculously hot but I didn't feel I NEEDED to use it like I previously did. Especially on night times. Hurray!

I have also managed to leave the house sans tights - Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.

In terms of medication, my Ciclosporin has been upped to 350mg a day - 200mg in the morning and 150mg at night. It hasn't made much of a difference for my face but then I have seen some people say it loses efficacy over time. I've been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I'll have been on this particular course for a year.

I am slightly concerned with it at the moment though. I've never witnessed it in the past, but over the year since I've been taking it I've gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I've slowly gone up to 10 stone and having recently upped the dose again (May 2015) I'm hovering around the 10 and a half stone mark. I'm absolutely gutted. I feel and look disgusting.

I'm still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can't even see my weight gain but that's because it has all gone to my stomach area so I can hide it to an extent. I've been experiencing a lot of bloating lately too. I'm supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.

I've already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?

Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven't had a reply. Not sure what more I can do on that front.

How is everyone else doing?

Friday, 19 June 2015

Things Not To Say To An Eczema Sufferer

Things Not To Say To An Eczema Sufferer: Dermatologist Version

So today after refusing to use steroidal treatment she comes out with this gem:

"...Well if you want to go round with a disease on your face instead."

Really? Did you just tell an eczema sufferer (eczema being an inflammatory condition not a disease) that they have a DISEASED face?

I hope to the Gods that this ridiculously idiotic woman doesn't go round spouting this sort of tripe as a scare factor to other more vulnerable patients. Way to give someone a complex hmm?

/Rant of the day

Thanks for your comments guys! I'm going to ask my nurse if I can see someone different next time.

Friday, 22 May 2015

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,

Tuesday, 12 May 2015

Jinxed for Infection

So I clearly jinxed myself the other day as out of no where an infection has taken hold. Miserable and peed off that I had to ring in sick. *le sigh*

Currently sat here with kitchen roll strung around my neck/ clutched to my face to staunch the yellow ooze.

Me before going to the doctors this morning.

Hey there gammy eye

Saturday, 9 May 2015

23.5 Months Steroid Withdrawal Ramble

Hey guys, never fear - I'm still alive!

I'm nearing the 2 year mark! Things still aren't going brilliantly, I'm still having flares and such and still taking Ciclosporin but overall I don't have too much to complain about as I've been able to go to work and live life a bit. I believe it has been nearly 2 months since my last infection so that's pretty great going for me.

I have a dermatology appointment at the end of the month in which I was going to inquire about the Dupilumab trials/ other biologic treatment, but I'm still unsure as of what to do. I do however feel I need intervention in order to carry on with my job and such. My goal this year is to be working a different job with full time hours. I'm fed up of being ill and I want to get on with my life's ambitions, of which have had to be put on hold because of being poorly. Saying this, I'm not sure what my career goals are. I've been aiming towards working in an office environment as I think that will be better for my health, but all in all I'm at a loss as to what I want to actually do. I'd love to get into copy writing or some such but not too sure what the preferred route is into such an occupation.

My diet could be cleaner, as I say every time I write a post. I do my best to eat well and reduce my dairy intake, however in the last few months I've put on a little bit of weight which I must do my best to shift. Exercising vigorously has still been somewhat of an issue though when I have endured flares so I just do what I can... which admittedly isn't a lot.

At the moment my face is doing alright, though it was far better yesterday. My arms and chest need a little bit of work and the backs of my knees have signs of irritation but overall I seem to be doing alright. I've been mostly pale this week which is good news.

Also my little space on the internet is about to hit a quarter of a million views. That is quite frankly, insane! Thanks to everyone who visits and I'm so happy from reading your comments and emails that I have been able to help so many of you to know that you're not alone, and to even show people that they may not just have 'eczema' any more, you may be suffering from red skin syndrome/ topical steroid addiction. But I will apologise for being distant. I think I'm just going through a bit of a blogging rut, which many people do, but it has been nice to take time out and reflect.

I hope everyone is doing well!

Monday, 6 April 2015

Pick Me Up Special Magazine

Hey guys,

It has taken me a while to get round to picking up (pun not intended) Pick Me Up Special magazine that came out on Thursday 26th March, but I thought I should mention it on the blog. I was approached by the magazine to reprint my eczema story from September 2013 as it was one of their favourites. I obliged, but told them that the previous print was incorrect as it stated that my doctor was happy with my steroid withdrawal, which of course is not the case. I told the editor that of course she could reprint the story, but only if she could do at least one of three things.

1. To change what was written as my doctor didn't agree and it would be a horrific withdrawal
2. To include ITSAN somewhere in there or
3. To make my blog link more visible

I was pleased to see there had been a change. However the view of my doctor is no longer mentioned and apparently I say that I would go back onto steroids if my skin became bad, which of course is ludicrous because your skin has to be bad to withstand the effects of the withdrawal. My blog link is on the page, but not really that prominent, though the fact that I have one is mentioned within the text, so the reader may go on to find my blog. Who knows?

I wasn't paid this time for my story but I hope it helps at least someone and in future I will ask to proof-read the story they write myself before it goes to print. I know they're just doing their job and making it look interesting but it'd be nice if they could proclaim the whole truth and not include their own embellishments.

Sunday, 29 March 2015

Month 22 Steroid Withdrawal

I am nearing my 2 years of withdrawal and still not done yet. I have been taking Vitamin D and Vitamin C with Iron tablets for around 2 months now but things still aren't running smoothly. I eat a mostly vegan diet with plenty of fruit and veg but there is always room for improvement. I'm waiting for summer to try going mostly raw vegan again as that is when all the nice fruits will be around.

We went for a little getaway on the 16th to the Lake District. I never in a million years thought I'd ever have the enthusiasm and motivation for going on a walking holiday, but I guess these things change. Anyway, no sooner had we arrived I could see the tell-tale signs of infection emerging. For goodness sake. I'm not allowed to enjoy anything am I?! What was more annoying was that we were blessed with dry, sunny days which were perfect for going for walks, but no, I ended up being mostly confined to the cottage. It was a stunningly twee little place though so I was glad we were able to make the most of staying there.

I did however force myself to go out a few times, even though I looked like the undead. My camera has been lovely to me though and you can't even see that there is anything awry.

I used my drying out and tea tree oil method but it didn't seem to work as amazingly as it had before, though it did appear to clear the majority. I booked in an appointment to see a doctor on the Thursday evening of our return who prescribed me antibiotics as a standby option. I can tell you, I'm bloody glad I did. Overnight it returned with a mean vengeance. Everything was yellow, swollen and I felt feverish and yuck. So I'm back on the unwanted antibiotics.

The following Monday I had a follow-up appointment with my derm nurse at the hospital. She essentially told me that she was drawing blanks with what other treatments I could have as I have tried them all. Ciclosporin isn't working as effectively as it should be any more and our goals of treatment have changed anyway, seeing as I keep having constant infections again. She wants me to push the idea of biologic treatment and has issued me a fast-track appointment with my consultant derm. I wasn't supposed to see her until August but now have an appointment for early May. Biologics are new in terms of treatment for AD individuals, and I was actually given the opportunity to go on them over a year ago, but back then I was fed up of being a guinea pig. I could kick myself now, had I known I would regress again. Ho hum.

But yes, unless things get remarkably better with my natural solutions, it looks like I may be forced to take that route. I have been doing a lot of reading and research into Dupilumab, a biologic which is currently being trialed, and have seen good stuff so far.

So yep, this is where I'm currently at.

Oh, and it hardly seems worth telling because it was so minuscule but I also had a small bout of herpeticum earlier this week that originated around my eye. Fingers crossed it is now lessening in severity as after a few days of treatment it disappears. At least something is going right!

Monday, 2 March 2015

Month 21 Topical Steroid Withdrawal

Hi guys,

I didn't mean to go so long without updating. Here is something I meant to tell you about. A day or so after writing my previous post, I developed pompholyx/ dyshidrotic eczema on my hands and feet. I've had it on my hands once in the past, to which the GP misdiagnosed it and told me I had scabies (lolwot?) and of course it wasn't, though that's a story for another day... It was this bubbly eczema stuff which went away with steroids, but of course that was before my steroid withdrawal so I panicked a bit this time knowing I might be in a bit of a pickle.

I've had to really up the contrast for you to see as it is ridiculously difficult to photograph.

Basically I was given antibiotics, which did their job of clearing up the infection and was told to restart my Ciclosporin to control the rest of my skin and to help the pompholyx and that was that... Although of course it's never that. The pompholyx buggered off but the infection came back a few days after finishing the course. Urgh!!!

I rang up my dermatology nurse on Friday just to let her know it had come back and she wanted me to see someone, however there was no one available to see me and I didn't want to resume the antibiotics so decided to try something different. For the first day or so I did what I normally do and let my skin dry out to cease the infection from spreading. However it was so unbearably painful that I needed to try something. I filled the sink up with water, epsom salts and a few drops of tea tree oil and used a face cloth and just planted it over my whole face. It was fine until it all dried out again.

Later on I tried just putting tea tree oil straight onto a damp face cloth. Never again. Oh my good God! The pain! It's definitely one that needs diluting.

I then came up with the idea of mixing a few drops of tea tree oil in with my white soft paraffin, and sparingly applied it to the infected areas. It left my face a bit red but a bit later it had calmed down my face significantly and I was starting to peel all over. I repeated this all weekend, mass shedding occurred, and low and behold the infection has gone! Hurrah!! I'm still left with some spots and redness and stuff but as it isn't a systematic treatment, I do expect it to take a bit longer. I'm so chuffed though.

From now on I'm going to be adding drops of tea tree oil to my emollient when I need to use it.

Three cheers for tea tree oil!

Also apologies for those who have emailed me and gotten no reply, I've been pretty much AWOL and moping around feeling sorry for myself. Hopefully I shall be back on form soon.

Wednesday, 11 February 2015

Still Suffering

Really need to find the charger for my proper camera. My phone is crap at depicting rashes and redness. You can see it in some more than others. I give up.

Rash pretty much covers entire body.

Excoriations on neck

Thursday, 29 January 2015

Month 20 Topical Steroid Withdrawal

Hey guys,

Of course everything has gone downhill again. As it always seemingly does with me.

OK, so as of last Friday (23rd Jan) I could feel the itchiness around my nose/ mouth returning. This of course then reared its ugly head and manifested itself as the infection of the previous 2 months. I have no idea why it always starts around my nose/mouth area. We've done countless swabs and there just isn't any rhyme or reason for it to occur. One of those many mysteries. So yes, back on the god damn antibiotics.

However, I also feel there may be a connection between these infections and the Ciclosporin intake. When I took Ciclo in the past, in the very first stages of my withdrawal, I kept getting countless infections, including MRSA, which was never an issue prior to this. For that reason I decided to stop it once again in August 2013 to give my body a break. Yet even still, the infections never manifested the same way each time as they do now. Although when I moved to Leeds everything flared up again and so if you have been reading my blog for a while you'll know I've been backwards and forwards with all this and had to go back onto it again for the billionth time.

Most recently I've noticed with these infections is that it seems to be a week in to taking the full dose of Ciclo that my skin will clear up nicely but days later these infections develop. I think it may be finally time to call it a day after this round, providing my skin is tolerable enough after this bout of infection to carry on without involvement, unlike these previous months where I have been left in a worsened state.

I have no decent photos to show you of my most recent episode but I can assure you it has been just like the others, weeping yellow crusts, pain, soreness, extreme itching and all that jazz.

I do however have this picture I took today where you can see I have some more hair growth. This always makes me happy. One day I may even restore my hair to its thickness I had when I was 12, but I would be equally pleased with having my hair circa 2009.

You can see that the antibiotics are doing their job and beating the infection. I am now left with areas of redness mimicking that of a rash, but this is the healing skin before the peeling stage. I love that stage even if it is messy and means I have to watch what I wear and the trail I leave behind me.

In other news, I received a phone call from my derm nurse whilst I was initially typing out this post to see how I was getting on. I decided to enquire about my blood test results that I had taken nearly a fortnight ago. My iron levels were low but still in normal range - I had a reading of 10 and the normal ranges are 5-300 so it could probably do with some boosting. She couldn't however find the Vitamin D test so I might have to have that done again.

Now, with my IgE testing this is where it gets somewhat interesting. She said my results fell into the bracket of "weak positive" but couldn't tell me much more than that. Last time I had my levels tested I was well above the 5000 range but I have no idea how that even equates and what the unit of measurement for that is?

I did however find a site that stated a grading system for allergen ige levels:
0 being negative at a reading of <0.35KUA/L
1 being weak positive at a reading of 0.35-0.7KUA/L
all the way up to the highest at grade 6.

This kind of makes sense to me because when I was very first tested in 2009 I was giving ratings - 5/6 dust mites and 4/6 for cat dander which  seems to reflect the graded system. I want to know how my new reading equates to the "thousandth" measurement and what it would be now if I'm now a 'weak positive'.

I can only evaluate from this set of results that my IgE levels have diminished since going into steroid withdrawal and for that I am ecstatic!

Sorry it's a long winded one today and I must say, I thank each and every one of you for your kind advice and words. Maybe one day I will see the light but for now I plod on and get through this how I can.

Happy healing!

P.S. my blog is 2 years old now!

Friday, 16 January 2015

Topical Steroid Withdrawal Month 19.5

Over the past couple of weeks I had stopped taking Ciclosporin but my skin just wasn't getting better so I decided to use it again the other day as I need to be able to work. I'm pleased to say doing this has helped to kick-start it and it is working again.

My visit to the dermatologist this morning ended up being surprisingly fruitful. She wants to keep me on the Ciclosporin for a year and then I will need to come off again, which is fine by me. I enquired about blood testing for deficiencies which she gladly agreed to do and said Vitamin D deficiencies can be a huge culprit in eczema cases. This I already knew as I have taken the supplements in the past but it was nice to hear her say it.

She also suggested taking my IgE levels again for cats, dust, pollens etc. in view of referring me onto an immunologist for desensitisation. I am so bloody happy. Not once when I asked about this in the past at my previous hospital was I told this would be possible so it is nice to have that avenue to venture if needs be. However I am also keen to find out my test results now that I am nearly 20 months into my TSW. Before quitting steroids I used to have acute allergic reactions and was even given an epi-pen as a precaution as it was unknown as to whether I would go on to develop anaphylaxis. However I noticed as time went on during my TSW I could stand to be around cats and have more exposure to allergens without rushing to A&E.

I also asked about Dupliumab which is what my previous derm wanted me to trial but I was fed up of being a guinea pig. I only really mentioned it to keep her well off the steroid route but she appeared to be happy with this option though the hospitals in this area aren't trialing it as of yet but I would be a suitable candidate if it came about.

When she examined me she asked what I was using topically as my skin is currently very dry. I told her white soft paraffin only, to which she asked about steroid use. I said my skin seemed to have become addicted and they weren't working for me any more and to my complete surprise she said "Yes, that can happen." What?! This is the same lady who said the complete opposite last time I saw her. No doubt she'll say differently again next time I see her but even still!

I have come away feeling very happy. I know derms are the enemy but today she seemed to be on my side and I left unscathed apart from being stabbed in the arm of course.

Happy days :)

Here's a silly unflattering pic I just took to showcase the paleness:

For reference this was me the other day:

Thursday, 8 January 2015

Happy New Year Red Skin Friends!

Wow. It has been an entire month since I last updated this blog.

Let's start by saying Happy New Year everyone! I hope this year will be good to all of us going through topical steroid withdrawal, and to those who haven't started the journey yet, I hope this is the year you see sense and potentially save yourself from long term pain of steroid addiction.

I figured I would reflect on and talk a little about what 2014 had in store for me so that I can look back and see how far I have come.

The start of 2014 was great. I was in a good place, my skin was pretty decent. I was able to wear black clothing, go out with my friends more, work more full time hours and not have to worry about my skin.

This soon changed. The start of the year my other half was in a bad place mentally and we needed to get out of Lincoln and find him a new job where he could relax and feel appreciated for all his efforts. I was also yearning for change as Lincoln had become a bit stale and I felt ready to move on and go forward with life. He found a fantastic job in Leeds, and off we moved at the end of April. However even though I did not feel at all stressed as I was excited for the change, my body had other ideas and off again started the pain and misery of my second full body flare. I was gutted. I wanted good change, to finally get on with my life.

I believe it has to do with the change of environment but there is little you can do until your body naturally adjusts. So pain was endured and I had to begrudgingly take time off work. After a trip to the doctors where I was given an antibiotic that I had used numerous times in the past I woke up the next day having had an allergic reaction. I was shipped to hospital only to be told it was 'just my eczema' giving me grief. Even though it was obviously an allergic reaction given my face and eyes had completely swelled up, just as it does when I am faced with allergens. Funnily the swelling went away after I had ceased the usage.

I was then sent to the dermatologist to continue with treatment that I had received at Lincoln hospital which turned out to be a nightmare having to start from scratch as they didn't seem to be able to locate any of my previous notes. There was a big family wedding coming up in August and I needed something to control my skin, so after a lot of arguing that I wasn't going to use steroidal treatment we agreed to put me back on Ciclosporin even though I was apprehensive because it had failed to work the last time and I ended up with MRSA in 2013.

The Ciclosporin worked its magic, but only for a short period. By the end of October my skin gradually became worse and worse and I dealt with more and more infections. I'm still in this place now where I don't know when my next infection is going to occur but I feel it could just be around the corner. I have a follow up appointment next week with the dermatologist which I am not looking forward to but I will see if it is possible to carry out blood work for deficiencies.

There has been one excellent thing though. I actually went home to my family for Christmas this year and it was great. My brother also has a cat and I didn't appear to react for the entire duration of the day. I did however start to get sneezy at my mum's house but all in all I was ecstatic that I could stand to be there at all.

I really hope this is the year things start to look up for me. I would ideally like to be doing a different job that doesn't involve me dealing with members of the public on a daily basis, as this is contributing to my endless infections, despite my precautions to use hand sanitisers and the like. I feel an office based job would be better suited for my recovery and much less stressful overall. Yet without the relevant experience and my awful absence record I'm still going to be stuck for a long while yet. Ho hum. My absence will only get better if I have a better suited job so it is a bit of a vicious circle right now. I feel stuck in a rut and want to broaden my skill set and be able to lead the happy life I had intended.

I hope everyone else is well and I endeavour to update more frequently again.