4 Years TSW

Hi everyone, I feel I owe you a post and an explanation as to my whereabouts!

Can I just start with saying thank you so, so much to anyone who has asked after me, anyone who has taken the time to email me, comment or message me on other social media. I am so grateful for you all <3 For those who have gotten in touch with me who wanted answers I'm so sorry I've been unable to supply them. Life at the moment is pretty hectic.

I've been wanting to post for a long time but never quite knew what I was going to say. My 4 years TSW anniversary was May 22nd, I was looking to post then but just didn't have the time or the will. It was only really this morning when I woke up a lot earlier than anticipated that I happened to look at a message on Facebook and discovered a whole section of unfiltered messages that contained an overwhelming amount of unread messages, dating all the way back to 2012! I am so annoyed that I've only now just been alerted to them and I can only but apologise for not getting back to you. I will say as well though that I don't add people I don't know to my personal Facebook account - if you want to talk to me I'd prefer it you emailed me. Alternatively I guess I could make a Facebook group...

So anyway. How am I? How is my skin?

I'm doing really good at the moment. I've landed a full time job in the city, which means hourly commuting each way. I'm in the process of buying a house, and have been since November so you can only dare to imagine the stress that I've been under! That is actually another reason I didn't want to post yet - I was hoping I could update from the new house but hey ho - life just doesn't always follow a plan.

At current my skin is pretty good. Dry, but good. I'm still taking Ciclosporin for now but I hope I can come off eventually or even start on Dupilumab, we will see. It hasn't been plain sailing though, when I first started at my new job I had a horrible flare which was really quite embarrassing after being good for a few months and having to meet new people. It keeps coming and going but it's bearable and I also put it down to the stress that comes with the house buying! Not only has my skin been bad but I've also been experiencing other unexplained health issues as well which we're currently trying to figure out. Stress is a funny old thing.

Another thing I wanted to mention is heat - it's really hot in the UK at the moment and I'm OK. I can deal with it now. I no longer come out in a full body heat urticaria rash, I'm starting to feel more confident that that is a thing of the past and was fully related to topical steroids, but until I flare again I'm not going to say that for definite.

There are moments that have me stopping and thinking, things now that I've been taking for granted, that I couldn't even dream to do when I was in the deep grasps of TSW and it's just astounding to see how far I've come. I have a full time commuters job, I can tolerate heat, my skin no longer comes off in gigantic flakes that compare to sunburn peel, I don't have to vacuum my bed, I can take a 5-10 minute shower and be ready within an hour. I can stay at other people's houses without thinking of myself as a hindrance or worrying that my skin or routines will be an issue. I'm no longer housebound. Touch wood I've not had a skin infection or a herpeticum outbreak, in fact I can't even remember when I last had one!

The only things that are still problematic for me is the aforementioned dry skin but even then it's not really that much of an issue - it'd just be nice to have suppler skin but dry skin has always be an issue of mine since day one. I'm also not yet confident I could live with a cat but I think that could be due to lack of exposure, I only spend time with cats once every couple of months so it will be hard to build up a tolerance, but gone are the days of full body rashes and acute asthma attacks when I so much as dare to look in the direction of one. I also still suffer from dermatillomania but I feel now that my skin has cleared up there's not as many imperfections for me to pick at, but of course the tweezers still come everywhere with me! I also don't wear make up but I'm cool with it... that's the other thing, when going through such a traumatic illness you just start accepting your appearance for what it is. In my early 20s before the onslaught of TSW madness I used to wear make up every single day and when I became so ill it was a travesty, but over time you just accept that it's your face. It'll do.

And now onto the eagerly awaited awkward photos (that's the other thing, it's been so long since I've taken photos of myself I just can't haha!):

I decided to take photos in a changing room because the lighting is always different.

Ignore the scab on my chin... it was a spot but dermatillomania and that...

I woke up like dis

Awkward flabby tummy pic

So as you can see, dry but currently rash free!

Hope everyone is well and I promise not to leave it so long next time.

Also I was emailed about this giveaway to share with you all which we can use to celebrate my 4 years of being steroid free!; Win some Dermasheets for your bed worth $270!

Good luck!

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!

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!

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:

16 Months TSW

OK, I'm going to stop apologising for my absence and lack of communication as it must be getting old to you all now and I'm sure you can understand why I have been updating less and less.

Tomorrow will mark 16 months post topical steroid treatment. Hurray!

Since my last post where I had been bad, I had an appointment last week with my dermatology nurse who has since upped my dosage of Ciclosporin, and to counteract that, has also upped my Aciclovir in an attempt to prevent the herpeticum from reoccurring. I do have a cold at the moment though so we'll see how I fare in the next couple of weeks. I have my fingers firmly crossed because I also have an appointment with the dermatologist in 3 weeks and I can't be bothered to go through the steroid spiel again. I don't know if I mentioned before on my blog but I was referred by the hospital for liaison psychiatry and I can only think that is because they think I'm steroid phobic, Oh dear, dear, dear.

I've seen a lot of people getting better recently and that gives me some hope to hold on to. I already know I'm better from where I was when I started the journey last year... even if my poor health has brought with it a series of unfortunate illnesses that you couldn't even make up, including my mini stroke/ TIA that occurred last August. Crazy times.

I need to regain control of my strict vegan diet as I have strayed away as September is my birthday month and there have been too many occasions that have called for celebration. It is however becoming difficult now that the seasons have changed as fruit is becoming worse in quality which is putting me off slightly. No one likes mouldy fruit. Yuck! I don't think healthy eating has helped my skin yet but then again I haven't done it for long enough to yield good results. Plus boosting my immunity, especially on immunosuppressants is definitely necessary.

Also pics:

Me today

Yay for eyebrows. I need to get them sorted now because they actually look disgustingly wide.

This was the only photo I could capture where my face didn't look MEGA wrinkly. I don't think it's that bad in person but my camera seems to make me look about 80.

See! D;

Does anyone else suffer from this or has your skin managed to regain some of its former elasticity?

Anyways enough of my ramblings and I hope everyone is faring well.

Ciclosporin Photo Update

Back on the Ciclosporin and life is good :)

Will do a proper update after the weekend!

Month 14.5 TSW

I've been very reluctant to post on here recently. I'm fed up of whining really but figured I should do an update on what's been happening.

Well I'm now 14.5 months into my withdrawal and I'm still a complete mess. It turns out I did have a staph infection so was given antibiotics but now that they've finished I'm still struggling. I haven't been able to get dressed in the past 3 weeks now bar a couple of times where I've managed to force myself into stuff. It's insane. I've also been off work on the sick for all this time too. I don't return until next Tuesday but I'm scared that I still might not be ready!

I have a lot of important family stuff coming up over these next two weekends and my skin couldn't have picked a worse time to degenerate. Luckily I see the dermatologist tomorrow with the view of putting me on Ciclosporin for a bit, mainly as a compromise because I declined the steroids. I'm terrified of contracting eczema herpeticum whilst taking it, especially with these said events I need to attend but I guess we'll cross that bridge when we come to it. I'm hopeful the Ciclosporin will at least clear my skin so I have a cleaner slate to deal with and will hopefully help my skin to heal a bit better.

I've also drastically changed my diet. For the past 3 weeks I've been following a high carb, low fat raw vegan diet. I've seen a lot of helpful information regarding this diet where people have managed to eradicate chronic illness, from eczema to the likes of cancer. I haven't noticed much of a difference yet, other than weight loss... but I'm surprised at how well I'm managing to keep it up. I don't really have any cravings for bad foods so I guess that's cool. I suppose my body is so toxic inside that it will take time to see any visual differences regarding my skin but I hope that this change will at least help to boost my poor immune system.

Thanks for all your messages, be it comments or emails and I apologise for not responding to everything, though I do read everything. I'm just lacking motivation and feel as though I've slowed life right down just to get by, but I know everything will need to resume to normal speed soon, as I just don't have time to be ill.

Ok, I've rambled on enough. I hope everyone is well and I'm sorry there are no photos. My camera battery has died and I can't find the cable to recharge it. Oh well.

9 Months of Topical Steroid Withdrawal

So today marks 9 months of ceasing topical steroid treatment and about 6 months of completely stopping the use of immunosuppressants.

I'm not gonna lie and say I'm doing fantastically well but I can definitely say that my life is back and I am now able to do so many things that I previously couldn't do. I think my last update is nearly 2 weeks old and in that time my skin has gone backwards and forwards, which is why I didn't really want to collate another post to show you that it has regressed again as it gets pretty boring really. It is comfortable enough to live with and I think that's fine by me, especially going by what I was like this time last year! In fact when I say regression what I mean is my face has gone a bit pink and flaky, my chest and neck have some eczematic parts and my arms are scratched, but my skin is much tougher now so it's not as though I'm sloughing it off with every touch. I should be more grateful really.

So if we look back... showering and getting dressed could take hours and hours, on a bad day I wouldn't even be able to put clothing on! Nowadays however, I can be out of the shower, have a bit of moisturiser on and dressed within 30 mins. Not bloody bad if you ask me! I can also stand to do stuff after I've spent the day at work without having to run headlong for the shower, and even if I do need a shower after work, I'm pretty sure I can be ready to leave the house again shortly after.

Also the way my skin is physically is very different. I was thinking the other day that my skin doesn't peel off in humongous pieces as it used to. It was kind of akin to sun burn peel where you pull a bit and an entire sheet of skin comes off(!), I remember the satisfaction of pulling all of my eyelid skin off in one swift movement. I'm a delight I know. Yet now it's more powdery in formation and isn't quite as joyous I suppose. It's quite dandruff like again.

I'm now off work for 2 weeks to go gallivanting up to Edinburgh for a couple of days and also bypassing my family and the cats on the way there (and back) so it will be interesting to see how I get on.

I do hope that everyone is doing well!x

Topical Steroid Withdrawal 8.5 Months

Ok so finally the flare that arrived at the beginning of the year appears to be dying down but I am left with a stinking cold which isn't too nice. I hope the weakness in my immune system doesn't bring on another bout of bloody eczema herpeticum, that'd be all I need!

My arms still aren't great as Shane found out to his annoyance as I kept him up in the night with my incessant scratching. Sorry dear! For those who don't realise the implications my skin have had on my relationship; Shane and I haven't shared a bed, unless staying in a hotel, for probably about a year. Really. This isn't how life is supposed to be! In time I'm sure the habitual night time scratching will cease and we can sleep in the same bed but at current I'm just too irritating to sleep next to. Plus he sleeps with his mouth open - ew!

Taken in the hallway which doesn't get as much light but I'm pale all over yay :D

Excuse the messy hair. I haven't had it cut in over a year!

Horrid bumpy, thickened texture.

The eyebrows that I gained back in around September have since disappeared as I've scratched at my face but as I said in my post from the other day, lots of baby hairs have started to sprout from my head so I can't be too disheartened. I'm actually wondering if the hair growth can be attributed to me taking the Vitamin D supplement. People say it usually takes weeks or months to make a difference but it's certainly a funny coincidence that after just a few days I notice all this new hair growth. Perhaps my system reacts quickly with working treatment, it certainly did in the past when I used Ciclosporin, where within 24 hours my skin was radically different, as you can see in the image at the bottom of this post.

Let's just hope this keeps up and in time as my skin strengthens I can use make-up again to draw on those pesky non-existent eyebrows... just like the old days!

Hope everyone else is doing well?

Topical Steroid Withdrawal: My Experience Of Immunosuppressants

So happy! It's only been an entire year since experiencing hair loss from using the medication Methotrexate that I can say my hair is finally growing back in! I do wish I could the same for my eyebrows though. Boo!

Methotrexate is an immunosuppressive drug used to reduce inflammation in those suffering from severe eczema when all other lines of treatment have failed. It has a 50% success rate which I personally didn't experience. It's primary use is as a treatment for cancer patients as it halts and slows down cell division, hence the hair loss. It's a pretty hard core drug.

Similarly Ciclosporin, Azathioprine and Mycophenolate Mofetil are also immunosuppressive drugs that I have been prescribed in the past. Out of all of them I have only had success with Ciclosporin. These drugs are usually used for transplant patients and autoimmune diseases such as rheumatoid arthritis, yet like MTX (Methotrexate), they have anti-inflammatory properties that help with eczema.

The only thing with these miracle drugs is that they are so highly toxic to other parts of your body. The side effects are so numerous and you have to take fortnightly or bi-monthly blood tests, blood pressure tests and urine samples to ensure that your insides are intact and functioning correctly.

Personally I would never take these drugs again for my eczema as I have ended up being far, far worse than where I started. These drugs have properties likened to corticosteroids (steroid creams and oral steroids) where although they suppress the symptoms they don't actually cure the problem. Over time the synthetic nature of these medicines can wreak havoc on your body and make you far more poorly than you were to begin with.

I used various strengths of these immunosuppressants over a long period of more than 3 and a half years and found enough was enough when my body was failing to protect itself from countless infections, both bacterial and viral. I was never well and found myself going to see my dermatologist nearly every day or week at least. I was a complete and utter mess and it's all thanks to these horrible drugs combined with the effects of steroids.

I implore that anyone who has eczema to not over use or misuse steroid cream if it is to be used as you will find yourself rapidly worsening and rising up the ladder of stronger and stronger treatments until your last option is immunosuppressant tablets. I must fully stress that I only got proper eczema in January 2009. It was only 1 year later that I was being freely prescribed these toxic drugs after being plagued with countless other treatments that didn't work. It really isn't worth being a guinea pig. Learn from my mistakes and find the solution to the problem. Find out why your skin is bad and eliminate the cause. Don't just try to hide it by masking the symptoms.

I'm aware that a lot of people are now using the likes of Ciclosporin whilst they battle topical steroid withdrawal. I believe that as long as these drugs are used for their proper purpose for a shorter period of time and it aids relief from the effects of steroid withdrawal then that is entirely your choice. I, on the other hand was told to use these alongside steroid creams and when I quit the steroids and used these on their own I experienced horrible constant infections. I'm pleased to say that since stopping them I have had far, far fewer infections that have required urgent treatment.

What are your thoughts on this matter?



*Disclaimer: I am not steroid phobic, I believe steroids have their place within medicine. I just think that they are abused a lot of the time and used as a first line of treatment when it is not always necessary. Also, this is just my personal experience with immunsuppressants.

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

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

A New Prognosis

You know it ain't good when you have your second shower of the day before 12pm! Anyway I guess you're all eager to know how I got on with the new derm?

Well despite her previously saying there might be something in this topical steroid addiction business, today she kept trying to endorse me with them. Doh.

So after much discussion. The plan of action is as follows:

• Take long term course of antibiotics starting with a 2 week dosage of 500mg x4 times a day and then reduce to 250mg x2 times a day for 3 months.
• Pick up my DreamSkin silk garments from the pharmacy consisting of head mask, round necked top and leggings.
• Continue use of Epaderm, White soft paraffin and Dermol.
• Continue to take Aciclovir.
• Give Protopic another go on the face despite its failed past attempt.
• Prescription of Ciclosporin just in case the above fails to work.

I asked her whether taking supplements whilst on Ciclo would enhance my immune system but her response was no. She explained that because eczema sufferers' immune systems are working in overdrive the immunosuppressant is provided in order to regain the perfect balance. Now, whilst I agree with what she said, surely the fact that I've been so unluckily susceptible to a plethora of infections whilst taking immunosuppressants shows that my body isn't provided with it's "perfect balance"? She continued to disagree and said that the infections are just a by-product.

Now, in that case I'm not too sure what to do, as obviously I don't want to rebound and end up back in hospital again. Though she said the antibiotics and aciclovir should prevent that scenario from occurring. I will definitely be taking multivitamins though. I tend to eat well so my body shouldn't be lacking massively in vitamins and minerals but who knows?

Despite her trying to push the steroids on me she has still been able to give me the best prognosis I've had in a very long time so I'm happy to continue seeing her. The suggestion of a food allergy test was proposed. I had to ask her if she was serious seeing as the other professionals I had seen said it would be a waste of time but she was very keen to give it a go. This should prove interesting indeed!

She also mentioned about a trial in London that she'd heard about for a drug (I forget its name) primarily used to treat asthmatic individuals (of which I am but no where near as much a sufferer as my eczematic condition) but has been shown to have also worked in some of those suffering from eczema and urticaria-type symptoms. The trial ended some months ago but she's looking into making an application for it if the above treatments do not come to fruition. 

So yes. Let's see how we get on shall we?

26th June 2013 TSW

My skin isn't improving at all. It's weeping constantly throughout the night making sleep somewhat of a difficulty to achieve and my antihistamines are not working one little bit.

I'm currently dithering as of whether to start up the Ciclosporin again as in the back of my mind I have a feeling it may be what contributed to my recent hospitalisation. On the other hand, I don't know how much longer I can deal with the itchiness. It's that kind of itchiness that I would describe as "searing" just like searing pain that is endured when you have small scratches and when showering is magnified as you experience the pain in each and every single scratch. The searing itch to me feels on a similar scale to this as you feel each and every single scratch tingle with an acute, unrelenting itchiness. It's terrible.

As for my skin itself, Shane pointed out to me last night that I'm not bright red all over my face any more, I'm back to being blotchy which I haven't experienced for a few months. I guess it's just a form of healing. 

For me, it's really hard to gauge what is going on. I stopped using topical steroids in May even though I had been going through a tough time with recalcitrant full body "eczema". As soon as I started the Ciclosporin, by the end of the week my skin was becoming beautiful. I was really happy that the dryness was less apparent and I'd lost the redness. However the very next day obviously I ended up with my nasty infection of eczema herpeticum and a secondary infection of cellulitis, and since that time had taken antibiotics to treat the cellulitis. Skip two weeks later with the antibiotics finished and I'm back to being a mess.

Is it the lack of antibiotics? Is it the lack of Ciclosporin? Or is it just TSW?

It's just so hard for me to know what avenue to take with all this as obviously my body is at the end of it's tether. If I'm not reacting through my skin then I'm getting reoccurring infections. I say this often but I'm just becoming tired of the whole routine.

Anyway I leave you with some images. They're not brilliant in showing all the detail but they'll do. 

 A mostly white face with red blotchy patches

 A close-up. There's a lot of raw openness which you can see in the red as well as yellow and orange areas where the skin has thinned.

 Red open scratches on my neck that lead down to my chest, mostly due to the skin cracking open when weeping.

Tummy has started up again. Grr.

Hospitalised with Eczema Herpeticum and Periorbital Cellulitis

Hello lovelies!

You may or may not have seen on my Facebook or Twitter that I got out of hospital on late Friday afternoon so I thought it was about time I told you all on here of my adventures!

Saturday Morning

So you'll know by my other half's posts that I was in a really bad way and from my initial post about it last Saturday where it rapidly spread in a very short space of time. I was given a high dosage of Aciclovir tablets to take in the hope that it would clear up as it usually would but waking up on Sunday morning was just something I never hope to experience again. My right eye had swollen shut completely but the swelling was so incredible that I nearly had a break down when I saw myself in the mirror. The herpeticum had spread all over my face and I looked a right old mess. It was then that I knew I needed a higher level of medical help. I had only taken 4 Aciclovir tablets but the condition showed no means of halting or slowing down.

Sunday Morning

When getting to A&E once again, I was fast-tracked to the outpatient GP who couldn't quite believe what he saw. In fact his report was so, so detailed that he even included diagrams and drawings to refer back to in the future. He also asked if he may take a picture on his phone (!) which after having explained that it was entirely for medical teaching purposes and would not be published in any books or articles I agreed to. He even made up a contract for me to sign to say that it would solely only be used for teaching purposes.

But in all honesty, even if it does get published in a book or article I'm not really bothered. If it helps to show people the severity of a condition then so be it. People need to learn about these often unseen and infrequent, debilitating and sometimes life-threatening conditions as I found out when I eventually got onto a ward. No one really had much of a clue what had happened. They saw the word "eczema" in my notes and figured I'd have an allergic reaction.

Monday Evening

What I actually had however was a bit of a shock. Yes, it was a crazy bout of Eczema Herpeticum that had originated in my eyes, but I also had a secondary infection of Periorbital Cellulitis! I was absolutely terrified. Especially when it seemed to be taking ages to settle the swelling. You can see in Shane's photographs that there was a distinct difference each day that he came to see me, but when you're physically living and breathing the condition it literally feels no different so it became hard for me to gauge if I was getting better.

Tuesday Evening

I was administered Aciclovir and Antibiotics via IV treatment which was horrendous enough. During the 6 days of my stay 6 cannulas were put in different places on my arms. My body really just didn't like them. I know I end up having trouble with blood tests but this was just ridiculous. Each one is supposed to last up to a fortnight, with me it was literally 24 hours, if that. If my veins weren't blowing up due to treatment then the cannula was physically falling out of my arm, even with a bandage holding it in place! They also had trouble even getting it into a vein a lot of the time. I'm now covered in stab wounds and have horribly bruised veins that will take blooming ages to heal. I would make a rubbish junkie, that's for sure!

Wednesday Evening

I finally saw the dermatologist late Friday morning for a review of how I was healing and was told I could stop the IV treatment and swap to tablets which as you can assume I was more than happy to hear. My poor old veins needed a rest! She has given me an incredibly high dosage of Aciclovir to take for 1 month to stop it from reoccurring as this was the 7th time I have have now contracted it since April 2012. Mental. I'm also continuing the antibiotics as cellulitis can take months to properly heal.

When I was first admitted they told me to stop the Ciclosporin in case that was part of the reason that my body was taking so long to heal. I still haven't restarted it just yet as I'm not sure if that could even be part of the reason that this ordeal occurred. I wasn't stressed when it came on and I was really happy as my skin had finally taken a turn for the better so I have no idea where this all came from as I usually get herpeticum when I'm run down, which I certainly wasn't. The derm told me to resume taking it on Saturday but my skin isn't actually too bad, or certainly not greatly unmanageable so I think I'll give it a while longer before making the switch back.

Thursday Evening

I'd love to thank all of the nurses who looked after me whilst I was hospitalised. I was actually kept in the Medical Emergency Assessment Unit for the entire duration of my stay which isn't usual as you're only usually kept there for 24-48 hours. The nurses were really good and understanding of my needs, which from what I've heard isn't typical of Lincoln County Hospital. So I'm pleased I was in good hands!

Just as I was about to be discharged however, I came to a realisation that my eye sight wasn't up to par which frightened me somewhat. The vision in my right eye had deteriorated a little so they didn't want me to leave without having had an assessment just to ensure no damage had occurred. Thankfully she couldn't find anything and it was probably just down to the Aciclovir eye drops I'd had to administer. Luckily my eyes have now returned to normal and it's my left eye that is slightly worse, which it was before. Phew.

Friday Evening

I'm now under strict orders to rest and get better. I'm seeing the derm tomorrow for a review and blood test (noooo!) and hopefully they'll be pleased that I'm getting better.

Also hilariously when I was first getting my cannula put in Shane was holding my hand, the next minute he'd dropped his (thankfully unopened) can of Relentless on the floor and after I looked at him to see why he'd been so stupid I realised he looked as if he was about to faint. Sure enough Shane's roots upended and in slow motion he sank to the ground. Cue both our embarrassed faces... The nurses had a lot to talk about that day anyway. The silly sod!

Ciclosporin During Topical Steroid Withdrawal

I am truly overwhelmed with just how well received my blog is. Everyone I've spoken to or has commented has thanked me for making it... but thank you for reading it! Just overnight alone I've had 200 views! My blog views are growing by thousands week by week and it's just incredibly mind-blowing to see that people from all over the world are gaining some form of solace from my little piece of the internet. I feel like a proud parent :)

You're probably wondering how I've been faring this week? Well since starting the Ciclosporin for the 3rd time last Saturday I can confirm that it is indeed working! Hurrah!!! I still have some rashy and scabby areas but they are no where near as prominent as they were this time last week. I also had a really bad dehydration headache yesterday evening so that has probably contributed to the rash I have today that wasn't there yesterday but I have faith that it will disappear again just as quickly as it came.

It's also nice having that feeling where you can just physically feel your skin is improving. It's hard to put into words but you just know that it's getting better. Yay for Ciclosporin! Without it I doubt I'd be able to face the hard journey of withdrawal on my own.

I took a picture of my arm yesterday whilst waiting to start work to show a comparison of my arm from the week before. It's startling really, but shows with perseverance and the correct level of medication it can get better without steroid usage.

Last week

   

This Week

Hope everyone is having a good week xx

Friday May 31st

*Be warned that there are some potentially NSFW images in this post.*

So on Friday I went to hospital and ended up being there for 3 bloody hours!!! My appointment was at 10:40 but I wasn't seen until an hour and a half later. I then had to get my blood pressure done, go for bloods, a new prescription of Ciclosporin and produce a urine sample which my bladder didn't want to cooperate with. Because I was there for so long I was unable to have a shower before work, leaving me in a right old state. So as you can see by the images below, it was not pretty.

I suppose I should tell you what happened when I saw my derm. Well he told me he read a bit of the article I gave him on Red Skin Syndrome but didn't find it particularly credible - thanks bud! Luckily my derm nurse seems to find it intriguing enough to look into though, so I shall share these articles and blogs etc. with her. 

I've decided to give Ciclosporin a 3rd chance whilst I withdraw because there is no way I will be able to continue to go to work whilst flaring seeing as I'm finding it difficult enough at present with the state I'm in. I'm completely zapped of energy which isn't helped by the fact that I've had to go to work for 6 days in a row and won't get a break on my days off as they are filled with things that need to be done. Ugh. I need to relax. It takes so much effort to preen myself for a short shift at work and by the time I'm home I'm scratching myself to pieces. Really not nice.

Without further ado - here are the promised pictures. Don't be too freaked out by my near-nakedness.

(L-R) Body; Chest, tummy, arms; Tummy/ above underwear line

(L-R) Tummy; Back of knee; Breast; Arm

A truly grimacing sight. 

My belly is so ridiculously awful. It actually looks like an old woman's tummy due to the loss of elasticity. My poor skin.

I'm also pretty wound up today because some complete moron randomly reversed into my car whilst we were waiting at traffic lights. Luckily there's only minor damage but I'm still hacked off. I didn't have a straight thinking head, and even less so because I was dying for a shower so I didn't get his contact details for if anything does occur later on. I swear people just like to vandalise my car for the hell of it. Must have a retard magnet on it somewhere...

Immunosuppressants

Sorry for the gap between posting, my mum came down for the weekend so it's been nice to spend time with her seeing as I rarely do get to see her because of my cat allergy.

I thought today I'd talk about immunosuppressants. This medication is only administered to eczema patients if the eczema is unresponsive to typical treatments such as steroid creams, antihistamines, oral steroids and protopic creams. The only thing about immunosuppressants, and the reason they're considered as a last resort, is because they dampen the activity of the immune system and are thus able to suppress the inflammation of the skin. Because they dampen the immune system this means that you are much more susceptible to side effects and infections... as I definitely found out.

I was first put on a course of Ciclosporin in 2010 after waiting for ages to get in to see the dermatologist here at Lincoln. These tablets can take up to 12 weeks to kick in, but for me it only took a matter of 2 or 3 days. My skin became completely and utterly transformed! I could go to the gym, I could do practically anything without my urticaria flaring. I even went home to see my Mum and managed to spend a night in my old bedroom. My skin didn't flare at all but my asthma was unbearable so I knew that would have to be the last of my overnight visits, sadly. But what you have to understand about my cat allergy is, even if I spend a little bit of time near them, or in a house they inhabit, within the next hour or so my skin would flare and my wheezing would become uncontrollable. Any longer, and it's a trip to A&E sadly :(

I remained taking these tablets for approximately 1 year, being monitored fortnightly for blood tests and my blood pressure. Some of the side effects Ciclosporin can cause include damage to the kidneys, cancers, high blood pressure and swollen gums. I did notice that my gums swelled a little and it was after a year of taking the medication that my blood pressure started to rise so I was taken off it.

Azathioprine was the next one they tried me on which did absolutely nothing for me after 12 weeks of being on it. My skin became bad because it wasn't being helped as much as it had with the Ciclosporin, so that was also stopped. They put me back on Ciclosporin at a slightly reduced dosage but it just didn't work for me as it had before. I was distraught. They kept me on it for over a year in the hope that it would start to kick in, but it didn't.

So that brings us to Summer 2012... where at the start of the year I was so ill I contracted the likes of eczema herpeticum and was put on steroids and antibiotics a fair few times as an attempt to control the eczema flares. We were also living in a house that was very damp and it didn't matter what we did, the mould would keep coming back, so enough was enough. I begged my dermatologist for another option. He wanted me to try Methotrexate but to me, the symptoms for that some how seemed so much more frightening than the Ciclosporin and Azathioprine, probably because it is only 50% effective in eczema patients... so we came to the decision to try me with Mycophenolate.

Mycophenolate didn't work either, but then I was only taking it for just over a week. In this week my health had become so bad that I had contracted eczema herpeticum AGAIN and had reoccurring tonsillitis. I also developed hand eczema at this point too. I really was in a low place.

We decided enough was enough with the damp and mouldy house we were living in, as obviously that wasn't contributing any good to my health, and the landlord was seemingly refusing to fix it. We moved into a newer, larger house in the middle of November which although I haven't noticed an incredible difference, is at least permitting me to go to work, which I couldn't in the months between September - November.

It was then in December that my dermatologist won me over to Methotrexate. Methotrexate is usually most used for conditions such as Rheumatoid Arthritis, and I actually know of a couple of people personally who do take it for that and don't have any problems. It was also initially used for cancer patients and it's function is to slow down, or halt the division of cells to reduce inflammation. By January I was beginning to lose quite a lot of hair and it was really upsetting me. I was losing daily what I would probably brush out in a week, so off it I came.

I'm still losing a significant amount of hair even now, and it's been around 3 weeks since I stopped the treatment. If anyone else has experienced hair loss from MTX how long did it take to slow down? I had to get quite a lot of hair cut off as a result because it had just become so fine and lank. I fought back tears when it was getting cut because as he handled it, I could see it was even worse than I thought.

So yes, that's my take on immunosuppressants. I would absolutely love if Ciclosporin worked again. Though perhaps it will do in a couple of years, who knows? Though I admit I don't miss taking the tablets. They're an inch long in size and stink of yeast!!

There was a picture floating about ages ago showing their size on a tape measure, but you can probably get the jist from these!

I'll talk about what treatment I'm currently undertaking in my next post :) Hope this has been helpful! xx