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.

June 24th 2013

Back to work this evening for me. Frustratingly after my skin has been doing so incredibly well it oozed and wept on my face, neck and chest last night, which has resulted in scratches, a red rash and little sleep.

Story of my life.

I hope it doesn't proceed to get worse else I'll have to seriously consider going back on the Ciclosporin, though in all fairness I am surprised that I have been able to go this long without anything but moisturisers. Very unlike me! 

I am a bit worried that I might get cellulitis again though. My course of antibiotics finished on Saturday and on the evening I had some edema (swelling due to fluid) under the eye that had been previously affected. I was worried that it was all going to kick off again but it seemed to be fine the next day. I'll be keeping a watch over it though as cellulitis can be a real problem, taking months to properly go away. Joyous.

Gah bumhug.

For once the camera has been kind to me as you can't really see the gouges/scratches but they are there. I'm just a very pink lady. My shoulders and tiny bit of hairline look really funny next to the redness.

Edit*

Just tried to take some more close up pictures but it's really hard to capture the uneven skin tone where it looks kind of orangey in some places, yellow in others etc. but I did get this one, which shows how nasty and dehydrated my skin is despite my best efforts...

Getting Better After Being Hospitalised for Eczema Herpeticum

Thought I better check back in to tell you how I'm doing. Well I haven't rebounded thank goodness! I'm still taking the Antibiotics and Aciclovir and taking it easy. I went to see my derm nurse on Monday and she said I was doing fantastically well. I've also changed dermatologist as I'm just not gonna get anywhere with this steroid withdrawal business with the one I'm currently with. The lady I've swapped to is much more open minded so fingers crossed we get somewhere!

Tomorrow I go back to make sure I am still on the mend - which I know fine well I am so it's a bit of a pointless appointment. Though, we only made it just to be sure I don't need to extend my sick note for work. It'll be nice to get back to normal as I haven't even left the house this week apart from going to see various doctors.

My skin has been doing incredibly well considering I'm still off the Ciclosporin. I just assume that the antibiotics are helping to keep it at bay. The heat has been awful though and I have been really itchy too but thankfully I haven't completely destroyed myself through scratching, though I have been unable to control myself and am consequently covered in scratches and red patches. My face is rather unscathed though. 

I ended up having to take pictures on my phone as for some reason my camera, no matter how the settings were adjusted, made my face look super bright red, but it isn't. The colour is much more of a match with these pictured below.

  Yayyy! The redness is subsiding...


That is until I put my hand next to my face and I can see that actually I still have a hell of a way to go before I can be considered my normal colour. Sigh. (But I do rejoice my white arm!)


I'll get there one day. We all will :)
xxx

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!

Another short update (including video from Jenny)

Hi Everyone,

I've got back from the hospital late again last night and am pleased to say that I saw another big improvement in Jenny's health.

She saw the dermatologist earlier in the day and was told that she is likely to be staying in until Friday, but will be visited each day by the dermatologist nurse or doctor for review.

There still remains the possibility that she will be held in over the weekend, in which case it will obviously be for the best, but hopefully I will be able to bring her home with me sooner rather than later.

Jenny is naturally becoming slightly frustrated at the prolonged stay, but appreciates it is for the best. Each nurse assuming that it is an allergic reaction isn't helping matters, but hopefully this event will help raise awareness of Eczema herpeticum across not just the nurses on that ward but others as well.

She has asked me to share a video which she recorded yesterday about her stay so far in hospital. Jenny also told me to mention that around 8 minutes in to the video when she mentions Eumovate she instead means Epiderm.

For those interested, I am posting daily updates on her recovery over at my Facebook page: https://www.facebook.com/runshanerun.

Thanks again for all your words of support and concern.

Shane

A quick update from Shane

Hi Guys, Shane here (Jenny's Boyfriend). 

I just thought I would provide you with a quick update on Jenny's condition on her behalf.

This morning Jenny woke to find that her face had swollen to almost twice the size it was last night and that the herpeticum was continuing to spread rapidly.

 

We went back to A&E as soon as we could where she was later admitted to hospital where she is staying indefinitely until it all clears up. She is currently receiving antibiotics and aciclovir via a drip. As it is there weekend and there are no dermatologists in we have to wait until tomorrow for some answers on why it was so severe this time round and when she is likely to be discharged.

I made a write up on this weekend's events on my running blog which you can read for more info here: http://shanes1000km.blogspot.co.uk/2013/06/48002-49619km-when-fear-is-your-only.html. 

Feel free to skip past the stuff about the race at the beginning.

Jenny will no doubt provide you with her story once she has been discharged, but for those of you who may have been wondering how she was, I'm sure there are many, I thought I would provide you with a quick update.

Thanks for caring,

Shane

Eczema Herpeticum Round 7

Well scrap that - me saying I'm on the mend...! I've just come back from A&E with my 7th bout of bloody eczema herpeticum!

Last night at work I had incredibly itchy eyes and just thought I was reacting to something. This morning I wake up with pus gluing my eyes together. Delish! I just thought it was conjunctivitis.

Not too suspect other than a gammy eye

An hour later I look in the mirror to see there are small pimples under my eyelash line... and now it's taken over the majority of my face!

3 hours after waking

I've been to hospital and after having disinfectant put into my eye (I so wasn't ready for it) my eyes themselves are alright, my eyelids are just covered in cold sores. Well my whole face is but it can become a very dangerous game indeed when the infection gets into your eyes. The thing about EH is that because it is a combination of two nasty skin issues it can turn into a super infection and if not treated in time can cause all sorts of horrific problems, even resulting in death in some instances. Not good.

Lol at the yellow disinfectant stuff 

So yep. I've given work an advanced warning that I'm unable to attend tomorrow because I look and feel horrific. It'll be money down the drain but health comes first doesn't it? I've been given 800mg Aciclovir tablets to take 5 times a day, so that should sort me out in no time. Thinking back I think 800mg 5x a day is a little excessive to the dosages I've taken in the past... but if it does the trick, and doesn't kill me, I shan't argue.

Can I have some good luck now please?

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...