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!

Too Much Too Soon?

This weekend my dear old Mum came to visit to keep me company. Was so lovely to see her, I just wish I could have been in better health. She accompanied me on Friday for my hospital visit which went well as my skin looked brilliant and they were happy with my improvement. They'd like me to undergo some more patch testing in a few weeks time as apparently I was only given a standard test before. I didn't have the heart to tell them that during TSW patch testing isn't always conclusive but hey ho.

I definitely overdid it though... considering over the past week I've not left the house and only days ago was pretty much unable to get out of the bath. Not to mention the lack of sleep and the like. We went to the hospital, followed by a food shop and my skin definitely hated me for it. I had to run straight into the shower when we got back home to give back a bit of lost moisture. We went out again later for some food and I think the abundance of sun exposure was my downfall. That evening my face got very itchy and oozed profusely in the night. I did however get a decent sleep though believe it or not! First full night in about 3 or 4 weeks!

The next morning my face was blotchy but not as bad as it had been. I stupidly decided we should go to Meadowhall for a shopping trip as I figured being indoors it would be alright. I forgot to bare in mind that it takes 1 and a half hours each way and being a Saturday it would be busy. Whoops. We left the house at 8:50am and got back in at around 6:40pm. A mega day out and definitely over-ambitious. I kept falling asleep on the train and struggled to stay awake during the film we decided to watch when we got back.

I did however have a brilliant night's sleep that night and in fact spent most of yesterday falling asleep too, sleeping for hours at a time. I guess my body definitely needed it!

Tonight I'm back at work and next week is the mighty Bloodstock Open Air festival. Let's just hope that sleep is a healer and I can build up my tolerance for going out.

& Don't forget to enter my giveaway Silentnight hypoallergenic duvet and pillow set

Is My Medication The Cause Of My Eczema?

Been doing more thinking about this "red skin syndrome" malarky to try to solve the mysteries of when did this happen, and more importantly, how did this happen?

I was talking on the phone to my Mum regarding when my eczema, asthma and allergies first started. She said my eczema started when I was a child, however she can never remember it being severe in any way, shape or form. It was mostly just sensitive, dry skin to which we stopped using bubble baths and switched to hypoallergenic products.

It was asthma that was most prevalent, often resulting in trips to hospital and taking oral steroids to help return my lungs to a more normalised state. I distinctly remember these times well. I would be at my Nana's house and she would dissolve the nasty little red tablets in some water in the "special medicine glass" to form the most vile pink fluid you will ever taste, which was always far too much for me to neck down, and would always proceed in me gagging. Memories to treasure, huh?

My allergies were also never really that bad. Although I did always have a snuffly nose and would produce more snot than is depicted as normal. Although I do distinctly remember picking up my friends' pet rabbit, and within seconds my eyes swelled shut and I was so itchy and sneezy and my asthma went mental. So never again did I pick up a rabbit. But I do remember going on trips to farms and picking up various animals and never having a problem. Same goes with cats. Misty was around before I was born. So I've always grown up with cats around me. In fact, my brother had gerbils too, to which I never reacted.

 

A face full of make-up, in my "Goth" attire, aged 15. Note the clear, pale skin :(

Fast forward a few years and I would often get small patches of eczema on my inner elbows, my upper lip and sometimes around my eyes. It was an annoyance, yes, but nothing that a bit of E45 and hydrocortisone couldn't help. I'm unsure as to whether my hormones played a part in this or not but I can't figure out what would have been the initial trigger.

Then we come to me aged 16 where I was faced with the awful situation of my Grandfather's funeral and meeting my biological Father for the first time in my life. I don't remember my skin being bad on the train journey down, though I do remember my asthma worsening as we changed trains on London Underground. I just remember the morning of the funeral the entirety of my face, neck, chest and arms were coated in a weeping, swollen rash which was so bloody itchy I couldn't stand it. E45 worsened it and from then on I've avoided it like the plague.

Now whether it was the stress of the situation that brought on the flare, my Grandad's extremely dusty home, the feather duvet's, the woolen carpet, or a combination of these things... I just don't know. It wasn't until the following day I believe, that I was admitted to hospital with an asthma attack. My skin had worsened so much and oozed and was burning and infected, covered in scabs that would just reopen and make me stick to the bed sheets.

It took around 6 months for my skin to return to normal after that, applying a zillion different steroid creams during this period. Then it returned to its "mild" form, not bothering me again for another 3 years. [Although it was during this "resting" period that I developed my heat urticaria. I came out in hives when on holiday in Spain and from then on whenever I got too hot would break out in hives.]

It was then in January of 2009 that it all kicked off again (for reasons I can't quite put my finger on...) and so I returned to using steroids, but this time more potent steroids. I was given oral steroids and antibiotics to prevent my reoccurring infected eczema. Unlike before where it was on my face, neck, chest and arms, it spread down my torso and then down my legs leaving no part of me unscathed.

I assume in the first instance of having eczema that it was down to a severe allergic reaction as why else would it have appeared on my most visible parts? I can only think that it was due to an airborne allergen... possibly the sheer levels of dust? The second time however, I really have no clue.

I have been in the same state since 2009 with only small breaks of respite. As I've mentioned before I've undergone all sorts of treatments, had allergy patch and IgE testing and nothing has really come to light properly, other than my obvious dust and animal allergies.

So could my eczema be a by-product of the steroids? Perhaps it was the steroids that caused me to get eczema to start with if I took them frequently for my asthma troubles. I just don't know and I need some answers soon.

Does anyone else who has suffered from Red Skin Syndrome have severe allergies? I need to help make a distinction I think.

Forever pondering...

Dust & Cat Allergies

So the inevitable has happened - my skin has flared and left me in a bad way. Ugh.

As I mentioned in my previous post, I was going to visit my family up north because I haven't seen them for a while and I needed to sort through my old bedroom. Unfortunately hotel prices were ridiculously high for when I had planned to visit so I stayed with my Uncle who lives in a pet free house. My Mum helped to clean and tidy it before my stay to prevent me from reacting to any potential dust.

For her own home, she attempted to make it a cat-free zone for the duration of my stay; locking the cats in the utility room with the freedom to go outside. I felt so cruel for allowing her to do this as they are rescue cats and became really upset and indeed vocal that they were being abandoned. It was heartbreaking. Cats are my favourite animals after all and I hate the idea of allowing them to be upset, but at the end of the day my health is more important.

Benny boy on the window sill - I hadn't realised I'd got such a hilarious photo of him LOL

My Mum hoovered the entire house, paying close attention to textile areas, such as removing the blinds and placing an abundance of carrier bags and whatever plastic she could find over the top of the bed to stop me reacting.

I didn't enter her house until the second day of my visit to withhold from a potential reaction occurring; loaded up on antihistamines. We even took further precautions by purchasing dust masks and cotton gloves to enable me to look through my belongings without touching or breathing in allergens that would cause an asthma attack or flare of the skin. I looked ridiculous and felt ridiculous that I needed to go to such extremes but they did help to an extent. It wasn't until after an hour of being in the room that I bent down to look through a wardrobe that my poor eyes that had been unprotected had a reaction and all of a sudden I had to be out of there. My eyelids were weeping. 

  Me donning mask and gloves
Me when I got home. Annoyingly my phone has made it look less severe than it was but I must stress that my face was clear and pale the day before.
The positives that can be brought to light are that I was still able to look through my things albeit for a short period of time whilst wearing the dust mask and gloves as they minimised my exposure. I should also be thankful that I didn't need to use the EpiPen or need to be rushed to hospital due to the lengths my Mum had gone to make the house more "Jenny Friendly". My asthma did flare whilst I was there but I only needed to take my inhaler a minimal amount of times compared to previous visits where I would take it countless times (naughty, naughty!).
Fortunately I had a text from a colleague last night asking if I could start work 3 hours later today which I am more than thankful for as I am in desperate need of the extra recovery time. A blessing in disguise really!

Hope everyone else's eczema/ allergies are behaving today :)