Not Getting Any Better

So things seem to be getting worse and worse. This past weekend was good though. I decided that even though I was probably in no fit state, I still wanted to go on a coach trip with my Mum to Chester/ Liverpool which meant getting up at 4:30am to drive up north to hers, to catch the coach for 9am, to go all the way back past Leeds again to get to Chester. Joy lol. But we did have a jolly good time despite me not being in my best shape and feeling sorry for myself a bit. It definitely beats staying at home moping around alone anyway!

So yes, Mum came back home with me last night as although I wasn't great I was still better than I had anticipated so we had decided that we would have a shopping trip in Leeds. I also had a follow up dermatology appointment to attend this morning from my time in hospital the other week. However by the time we got home, there had been some road closures in the city centre and I got SO lost (thanks sat nav!) which resulted in me being completely stressed out and a little worse for wear and didn't think it had actually been a great idea to invite my poor mum back with me when I felt so hideously ill. But we persisted all the same.

So this morning: after getting completely lost and driving round and round the infamous ring roads of Leeds, I finally arrived, 40 minutes after my appointment slot. It turns out there was a long wait anyway so it probably worked out in my favour that I had been so late as I didn't need to wait too long to be seen.

The dermatologist was the same man who had seen me at the hospital. He examined me and said I would need a course of oral steroids and topical steroids but obviously I wasn't having any of that! After we'd talked about my extensive and complicated history for a while I could tell he was only really interested in following normal protocol and refused to believe my topical steroid dependency. I told him about how my allergies had diminished when I stopped using them and he said that it was just coincidence. I think not.There was no changing his mind though. He was adamant that this was "just the nature of the eczema beast" and that I would always be fighting it. Eye roll.

I asked about going back onto Ciclosporin even though I'm now afraid of using any immunos because of the high risk associated with me contracting eczema herpeticum. He said he would need to test my bloods but he wanted me to go down the steroid route first. I declined and started to get into a bit of a tizz, in the end it resulted in me bursting into tears. He asked if I'd like to think on it for a while, so I was whisked off to another room to speak it through with my mum and one of the nurses.

I think we must have been sat there for about an hour just going round and round in circles. The nurse had to leave the room at one point and when she came back she said she'd spoken to another of the nurses who suggested it'd be a good idea to admit me to hospital so they could monitor me to ensure a herpeticum attack didn't occur. Although I think it would probably have been the best idea, I don't want to use steroid creams any more, neither do I want to risk putting my job in jeopardy by having any more time off. If I was allowed to be admitted with just the use of moisturisers I would probably have said yes, but as it is... I just can't.

After much deliberation I went back to the dermatologist and we came to a compromise and agreed that I would go back on the Ciclosporin, providing my bloods and chest X-ray came back OK. I would also be taking a maintenance dose of Aciclovir to prevent the herpeticum from returning. This seemed to satisfy him and steroids weren't pushed on me again thankfully. The only thing is I have to wait 3 weeks to be issued with the Ciclosporin so we'll see how I get on in the mean time.

I am in a really bad place again and definitely need some form of intervention right now just to get through this as I need to start getting my life back on track again. Stress is definitely the trigger for my skin and moving to Leeds certainly hasn't helped me in the slightest. I just hope I see some small improvements soon with my dead sea salts. Also I was wondering where people are getting their colloidal silver from? I've heard that sometimes a silver substance can cause the skin to change a bluey/silver colour and is posed under the name of colloidal silver and I'd hate to buy the wrong thing. You never know who is reputable these days!

Any ways, I hope everyone else is well!

2014 Eczema Flare: Topical Steroid Withdrawal

Ok so this is annoying. After a particularly good stint I guess it was only a matter of time.

Not sure what has brought this on but needless to say I'm not a happy bunny.

Do or Die.

I want to thank everyone for your kind words and support <3 it really does mean the world to me! I appreciate and wholly value all the comments and messages you send to me, even if I am a bit slack at replying - sorry! :(

So literally an hour after writing my last post I decided I had better go to the hospital as my legs had turned bright purple and were cold to the touch which scared me as I thought my veins must have packed in! When I got there I ended up seeing a dermatologist I've never had the pleasure of meeting before. Basically she told me that my skin was akin to that of a burns victim and if she could she'd admit me there and then. She said I would die if I didn't get to grips with my treatment as I would lose heat and fluid rapidly through my skin. Being told you'll die if you don't use topical steroids? Just what you want to hear! Not.

She then gave me an ultimatum: I use topical steroids or oral steroids. No and no thank you very much. She said because I'd been scratching myself silly my skin had thickened so the TS wouldn't have a thinning effect... erm excuse me but can you actually see my skin? It is so thin that the slightest touch/ graze makes it pour with ooze and bleed. Yes, areas such as my inner elbows may be thicker but the rest of it certainly isn't! Oral steroids are definitely a no go as they result in herpeticum. The only other option I was given was to go back on Ciclosporin which I was reluctant to do as last time I ended up in hospital after a week of taking it with said herpeticum.

I was told to think about it over night and to see my own consultant in the morning. It was pretty much the same fight when I went to see her yesterday. She said she'd read all the articles on Red Skin Syndrome and didn't find them very credible. To which I retorted that there are support groups with rather a lot of users all going through this very same hell, and I've witnessed people come out the end of it cured. She was having none of it though.

I ended up coming out with Ciclosporin and a higher maintenance dosage of Aciclovir to prevent the herpeticum. She also gave me a drug called Plaquenil, primarily used for malaria patients but has shown to improve inflammation in the skin, which after having read the side effects... just no. I've never heard of a drug with the ability to change your hair colour before... what the hell?! It also lists serious risks like eye problems and even heart attacks as a common side effect if you accidently take too many. No. I was also fobbed off with a topical steroid - Cutivate which she assured me was fine to use because it is one of the newer types and has less side effects. A quick Google search revealed that it is a Class 3 potent steroid (out of 7 classes) and she wanted me to wet wrap it! HA! No!!

Anyway, I've woken up today and had a mass shed and my skin inflammation has calmed down a little. I can only attribute this to the Ciclosporin which I've only taken 3 doses of so far. I see my derm again on Friday so I hope my skin has returned to a healthier state so that we don't end up having a stand off over me not having used the topical steroid.

Fingers crossed eh?


Edit:

Just to prove how awesome Ciclosporin can be... in only 2 doses

1st image taken yesterday with flash, 2nd yesterday without flash, 3rd today

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...