A Brief History From Memory

Hey guys,

I've got this written in my FAQ but not many people read it so I thought it was worthwhile posting it here. It's just a brief low-down of my eczema/ skin condition journey. Obviously there is a lot more to it and this is from my ever dwindling memory rather than from doctors notes but it is a pretty accurate account of what has happened to me. It's also not the most coherent but helps to give a better understanding of the complexity of my condition and why I have gone on to develop an addiction to the medications - I just used too much! It is also quite likely I've forgotten to include something. But here we go:

• Childhood - Hydrocortisone. Oral Prednisolone (for asthma). Had chicken pox twice in the space of a year.

• 2001/2 - Betnovate scalp lotion (first started to use hair dye)

• 2003-2005 - all of the above treatments and various moisturisers when needed for small patches that developed on face.

• Nov 2005 - Stressful event resulting in huge allergic reaction affecting face, neck, arms and chest - All the above + Eumovate, Betnovate

• April 2006 - cleared up and returned to small insignificant flares on face and neck. Just used Hydrocortisone and Eumovate

• July 2007 - Heat induced urticaria developed when on holiday in Spain.

• 2006-2009 - Hydrocortisone/ Eumovate

• 2009 - Was given steroid to treat rash on face, within a few months spread all over my body apart from legs. Used Dermovate, Eumovate and told to use as much as I wanted/ like a moisturiser. Had patch testing and IGE testing. Oral steroids. Coal tar, yeast cream (not to be used on face but was told to by derm), Potassium Permanganate. Protopic. Developed red/brown patches of skin on my neck and elbow flexures that were as hard as a scab and really painful. Couldn't move my neck. Was given a cream when I moved to Lincoln but can't remember for the life of me what it was. Was bloody brilliant though.
• Developed severe allergy to the cats at my mum's and was hospitalised a few times when I went to visit, despite having lived with them my whole life!

• Jan 2010 - Immunosuppressant Ciclosporin whilst using steroid creams.

• August 2011 - started to get high blood pressure so had to come off Ciclosporin. Was given several rounds of oral steroids when steroid creams wouldn't help.

• April 2012 - had round of Oral steroids and developed eczema herpeticum after never having a cold sore in my life.

• Tried Ciclosporin again to no effect.

• Visited Allergist/ Immunologist for another perspective but was just ridiculed and humiliated and told "you just have eczema".

• Tried various diets to no avail.
• September 2012 Tried immunosuppressant Mycophenolate Mofetil to no effect.

• October 2012 Tried immunosuppressant Azathioprine to no effect.

• December 2012 Tried immunosuppressant Methotrexate had no effect but started losing hair so came off it in Feb 2013.

• Light therapy which just made my skin look sunburnt, minus my white nose so knew it wasn't a true burn.

• Tried Ciclosporin again to no effect but remained on it for some time. Found out about TSW.

• Started TSW May 22nd 2013. "Eczema" spread everywhere apart from my toes.

• Had major super infection from eczema herpeticum and cellulitis in the eye so was hospitalised for a week. Came off Ciclosporin to try to speed up getting rid of infection.

• Went back on Ciclosporin but became incredibly poorly.

• August 2013 - Found out I had contracted MRSA from the hospital stay so ceased Ciclosporin. Started taking antibiotic Doxycycline for 2 weeks.

• End of August 2013 - Had suspected "TIA"/ "Mini Stroke"

• September 2013 - MRSA came back with vengeance so proceeded to take Doxycycline for 3 months as should have done originally.

• Skin stayed in a mostly good state until April 2014 though still had random bouts of herpeticum but not so extreme.

• April 2014 - Bad case of eczema herpeticum.

• May 2014 - Moved to West Yorkshire and skin became as intolerable as when first come off steroids. (Yearly rebound?)

• Was incredibly poorly until August 2014 when went back on Ciclosporin. Had 6 weeks off work.

• Ciclosporin helped for a month and then had recurring staph infections from October 2014 - May 2015.

• May 2015 - Last staph infection *touch wood*

• August 2015 - Been in a stagnant phase where I will randomly flare but be mostly clear. Eyebrows are back. Still on Ciclosporin but on a higher dosage. Came off birth control pill in May (had been taking for 10 yrs) and have gained a lot of weight. Waiting for hormones to level out.

So all in all we can conclude that I have been given far too much potent topical steroid creams to slather unnecessarily all over myself. Too many round of antivirals and antibiotics for my endless bouts of herpeticum (think we're around the 20x mark now?) and bacterial infections so my gut probably doesn't understand what's right or wrong any more. Far too many rounds of immunosuppressants and just too much in general for my poor old body to handle.I just hope my body will one day forgive me and that all the nutrients I consume will finally have some effect.

Topical Steroid Withdrawal Month 25.5

Hey guys,

I'm now 2 years, 1 month and a couple of weeks into the topical steroid withdrawal process. I'm still flaring but it is primarily on my face and neck, as it used to be before I became consumed by eczema. I have little patches on the backs of my knees and my inner elbow creases, alongside a couple of other insignificant places but that is because it has been so damn hot here in the UK and my sweat has obviously caused skin irritation.

About that though, the heat I mean. I've done much better this year with the heat than in the previous couple of years. This time last year, and in my first year of withdrawal, my skin was an absolute mess. I had to take a hell of a lot of time off work because I couldn't even get dressed because my skin was that awful. This year, I'm sweating and it's still horrible and my face and neck have gone rashy but it isn't anywhere near as bad. Also I am so thankful I now have a car with air con. That really helped when the inside temperature read at 35 degrees(!) and the breeze was also warm when the windows were down. Also worth noting, at home this year I haven't used the fan to help cool down. Shane has, because it's been ridiculously hot but I didn't feel I NEEDED to use it like I previously did. Especially on night times. Hurray!

I have also managed to leave the house sans tights - Yay! If you remember last year, and the year before, my legs were a mess from TSW so had to stay covered up if leaving the house. My whiter than white pins have finally seen daylight publicly. However being able to wear shorts is still a long way off because of stupid weight gain. Read below.

In terms of medication, my Ciclosporin has been upped to 350mg a day - 200mg in the morning and 150mg at night. It hasn't made much of a difference for my face but then I have seen some people say it loses efficacy over time. I've been on it numerous times in the past 5 years so this makes sense. I do have to come off it next month though because I'll have been on this particular course for a year.

I am slightly concerned with it at the moment though. I've never witnessed it in the past, but over the year since I've been taking it I've gradually gained over a stone in weight without changing my diet or lifestyle. Some people have said this could just be my body readjusting because of the steroid withdrawal as initially I lost weight. To put this into perspective prior to TSW I was around 9 stone 5lbs this dropped to 8 stone 11lbs, and then when my hair started to grow back (I lost a lot of hair from taking Methotrexate back in Jan 2013) I went back up to around 9 stone 4lbs. I then started my vegan diet in June 2014 and hovered around the 8 stone 13lbs to 9 stone 1lbs. Then I went on Ciclosporin in the August 2014. Since then I've slowly gone up to 10 stone and having recently upped the dose again (May 2015) I'm hovering around the 10 and a half stone mark. I'm absolutely gutted. I feel and look disgusting.

I'm still finding difficulty with exercising and now even more so because of this damned heat. Perhaps I need to go back to the strict plant based vegan diet I was undertaking this time last year which I keep harping on about. I just feel crap and rubbish. A lot of people claim they can't even see my weight gain but that's because it has all gone to my stomach area so I can hide it to an extent. I've been experiencing a lot of bloating lately too. I'm supposed to be having a blood test this week so perhaps it is worth enquiring about a urine test just in case.

I've already asked in the Facebook group, but has anyone else experienced weight gain from Ciclosporin?

Also I did ask about trialing Dupilumab but the derms have been rubbish in pushing it, and I did try emailing myself but haven't had a reply. Not sure what more I can do on that front.

How is everyone else doing?

Happy New Year Red Skin Friends!

Wow. It has been an entire month since I last updated this blog.

Let's start by saying Happy New Year everyone! I hope this year will be good to all of us going through topical steroid withdrawal, and to those who haven't started the journey yet, I hope this is the year you see sense and potentially save yourself from long term pain of steroid addiction.

I figured I would reflect on and talk a little about what 2014 had in store for me so that I can look back and see how far I have come.

The start of 2014 was great. I was in a good place, my skin was pretty decent. I was able to wear black clothing, go out with my friends more, work more full time hours and not have to worry about my skin.

This soon changed. The start of the year my other half was in a bad place mentally and we needed to get out of Lincoln and find him a new job where he could relax and feel appreciated for all his efforts. I was also yearning for change as Lincoln had become a bit stale and I felt ready to move on and go forward with life. He found a fantastic job in Leeds, and off we moved at the end of April. However even though I did not feel at all stressed as I was excited for the change, my body had other ideas and off again started the pain and misery of my second full body flare. I was gutted. I wanted good change, to finally get on with my life.

I believe it has to do with the change of environment but there is little you can do until your body naturally adjusts. So pain was endured and I had to begrudgingly take time off work. After a trip to the doctors where I was given an antibiotic that I had used numerous times in the past I woke up the next day having had an allergic reaction. I was shipped to hospital only to be told it was 'just my eczema' giving me grief. Even though it was obviously an allergic reaction given my face and eyes had completely swelled up, just as it does when I am faced with allergens. Funnily the swelling went away after I had ceased the usage.

I was then sent to the dermatologist to continue with treatment that I had received at Lincoln hospital which turned out to be a nightmare having to start from scratch as they didn't seem to be able to locate any of my previous notes. There was a big family wedding coming up in August and I needed something to control my skin, so after a lot of arguing that I wasn't going to use steroidal treatment we agreed to put me back on Ciclosporin even though I was apprehensive because it had failed to work the last time and I ended up with MRSA in 2013.

The Ciclosporin worked its magic, but only for a short period. By the end of October my skin gradually became worse and worse and I dealt with more and more infections. I'm still in this place now where I don't know when my next infection is going to occur but I feel it could just be around the corner. I have a follow up appointment next week with the dermatologist which I am not looking forward to but I will see if it is possible to carry out blood work for deficiencies.

There has been one excellent thing though. I actually went home to my family for Christmas this year and it was great. My brother also has a cat and I didn't appear to react for the entire duration of the day. I did however start to get sneezy at my mum's house but all in all I was ecstatic that I could stand to be there at all.

I really hope this is the year things start to look up for me. I would ideally like to be doing a different job that doesn't involve me dealing with members of the public on a daily basis, as this is contributing to my endless infections, despite my precautions to use hand sanitisers and the like. I feel an office based job would be better suited for my recovery and much less stressful overall. Yet without the relevant experience and my awful absence record I'm still going to be stuck for a long while yet. Ho hum. My absence will only get better if I have a better suited job so it is a bit of a vicious circle right now. I feel stuck in a rut and want to broaden my skill set and be able to lead the happy life I had intended.

I hope everyone else is well and I endeavour to update more frequently again.

13.5 Month Photos

Please ignore the toilet and general bathroom stuff in the background. I can't be bothered to retake the photos.

Face with a little bit of Purepotions on. Yay for eyebrows though.

My lovely Deirdre Barlow neck :(

Chest

Right hand side really seems to be going at it in terms of flaring.

Right leg

Left leg

Left thigh

Poor wrinkly tummy

Mass shedding on left arm (right is the same but too hard to photograph!)

Hard to see but wrists have a bit of a sleeve thing going on

Right arm - you can just about make out the open sores

Armpit. Infection has disappeared thankfully but it's dry and slightly red.

Back of knees are appalling and I'm finding it hard to walk.

Still Plodding On

Hey guys, so it's been 2 weeks since my last update and there's just so much to tell you. Firstly, the reason I haven't put up any new photographs of my skin is because there hasn't really been much to show you in the way of change. I'm still dry, still getting red rashes from time to time so the pictures would just be similar to the others and I felt that pointless. I've also had a really hard time taking photos of my face. I just can't do "selfies" any more and if it's not that, then the camera keeps depicting redness that isn't there! Stupid thing. I also still have itch fits from time to time, though these are less and less severe and a very quick shower usually sorts me out.

The second thing I have to say is... *drum roll please*............. we're moving to Leeds! Yes, finally we're moving out of Lincoln and I am so damn proud that we can start to get our lives on track again. We've been stuck here for the last 5 years (6 for Shane) and it's just time to move on. I don't know if this is having an affect on my current red, dry skin because I can't say I'm not stressed. There's so much to do and finances won't be great this month but in a few months time we will be in a much better position. Yay! Also a few of my friends live in or around the area and my mum will be a mere hours journey away <3 I will however miss my Lincoln friends. Now that I'm finally on the mend I can be social but just as this is happening, I'm forging friendships only to leave them behind which sucks!

This past Wednesday I went to see my derm nurse and typically I didn't look my best but oh well! I was a little bit red and blotchy but that's probably the stress of trying to keep my skin nice to show her how well I've been doing. (FYI: I haven't seen her since October 2013!) She said the dermatologist had been given the go ahead to trial a new injection and I was one of the prime candidates. Well ha! I'm moving to Leeds so you can stick your injection (pun intended) I'm not going to be your guinea pig any longer! So that's the end of that. I have an open appointment if I need it, but otherwise I'm basically free.

My legs and back have retreated to their former white glory. The skin is lovely and smooth and doesn't require any moisture at all! Some areas get dry from time to time but I couldn't be happier. My tummy still gets the odd flare but it's nothing to complain about.

You can still see the scarring but when comparing it to how they were they're bloody fantastic! Here's a reminder of how they were.

I can't seem to stop scratching at my arms so they're a bit of a sorry state but I know they'll sort themselves out in their own time.

Similarly I can't seem to leave my neck alone at the moment. Last week it was fine but for some reason this week it's gone back to it's horrible dry self. Ho hum.

The brows are coming back once again but you can see a lot of creases and wrinkles from the dryness of my face.

This side appears to be my better side. Though the brows are still struggling.

And here I am. I'm a little bit red but I'm not too fussed. It doesn't look a bad red like it did initially. For people who didn't know how naturally pale I was they would probably think this was my normal tone... maybe.

Life does get better!

Hope everyone is well :)

Topical Steroid Withdrawal 6 Month Anniversary

I drafted the following post last week however I've woken up today with my eye closed shut with pus and the telltale signs of eczema herpeticum. I'm long over due I guess...


So next Friday will mark my 6 month anniversary of being free from using topical steroids. It will also be around 3 months of quitting immunosuppressants too.

A lot of changes have been happening over this past week. Changes I am so happy about and feel incredibly grateful and optimistic that next year won't be so tough. Next year surely has to be a good year!

I've been taking small steps to be more social, whether this be grabbing a hot drink with fellow colleagues after work, or getting out of the house that little bit more for a browse in the shops, or even picking Shane up from work, I'm doing it and it feels great! I've been making more solid plans such as arranging to attend my work's Christmas party and even paying in advance. For how I've been over the course of this year, I wouldn't have even dreamed of paying cash up front for an event just in case I needed to bail out but I do feel very optimistic that I'll be able to go regardless.

I've now been attending my shifts at work 4 times a week since my last bout of illness in the first week of September. I think this is an amazing achievement as I was off so often that my attendance percentage was sky high and I'd come to the red sheet of warnings far too often than I care to. Obviously my managers understand my condition so knew it was not my fault for needing to take so many sick days but it still stings to sign that final warning sheet, where normally 3 strikes and you're out is the usual procedure. My hours have been creeping up and I even asked if I could take on another day whilst it's the Christmas period. Luckily because it is only a part time job my longest shift only requires me to be there for 6.5hrs. The rest of my days are usually only 4-5hrs, if that but it's still amazing progress!

On Wednesday I probably reached my biggest achievement of all. I was sitting in my craft room actually crafting! When we moved to this house one of the requirements was for me to have a room dedicated to all of my craft things (saying I have a LOT is an understatement!) and it's only taken me a year to be able to use it for its designated purpose. To also further this, the fabric I was using was shedding an awful lot of fibre dust and did I react? No! I'm literally over the moon <3

Also I've been able to start doing a bit of exercise. I am so unfit it is ridiculous! For years now I have been prisoner to the awful heat induced urticaria which is brought on by exertion, meaning exercise was nigh on impossible. Some how I've been able to do cardio, albeit not for long because I get so out of breath(!), but my hives appear to have been kept at bay. Sweating is still a little bit of an issue but I'm not scratching myself frantically as I would have been previously. It definitely feels a lot more tolerable.

I'm so, so happy that my life is slowly but surely getting back on track. Next year I'd like to achieve quite a lot before I hit the big 25; such as going abroad to maybe Norway or somewhere lovely I've never been, finally obtaining a full time job, moving away from this city, starting up a craft based business and finally being able to properly say thank you to Shane for supporting me and being there in my toughest times. Without him I really don't know how I'd of survived.

Life is getting easier.