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!

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!

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.

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?

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,

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

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!

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!

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

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!

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.

Month 18 TSW

Last Saturday I reached my bench mark of 18 months, however I have been unable to sit down and blog because work has been pretty manic recently with the build up to Christmas and all of this Black Friday malarky, of which I have had to work. Luckily my store didn't get any aggro and I'm not starting until a little later today so although busy, I'll have missed the huge rush, if there even is one...

So how am I?

Not great really. The infection came back for the third time however the antibiotics aren't doing anything. Last night I must have scratched myself raw because I've woken up oozing all over my neck, cheeks and ears. It's pretty grim :( Especially so since I haven't had any oozing of this sort for a long time. I'll just accept it as one of those things.

No photos today as I simply cannot be bothered to pick up my phone. So you'll just have to take my word that I'm not that great. Obviously this is nothing at all like past flares as I don't get the hives that accompany them any more. Yet it is especially painful today and I can barely move my neck because it is so sore and I'm keeping it moisturiser free. Today will be a fun day at work I'm sure.

Maybe I'll feel more inclined to post photos later but for now -

Over and out!

Edit:

I changed my mind. This blog does act as my form of diary after all.