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.

26.5 Months TSW

Just a quick update from me! I'm still in my plateau at the moment. My skin isn't perfect but nor is it really troubling me. I flare from time to time but it has been mostly manageable.

Whether it be a case of the fact that I'm still on Ciclosporin, or purely just coincidence, the summer heat has been much more tolerable and easier to endure this year, though I do actively avoid getting hot and bothered just in case I induce an unwanted reaction.

Yesterday I came back from a few days away staying at a hotel and don't seem to have caused much damage to myself. Usually I end up scratching myself to bits when I stay elsewhere - whether this is down to a different environment or just something in my mind I don't know but I left unscathed and didn't keep the boyfriend up all night with my violent scratching episodes.

I do still have areas of blotchiness/redness but they really don't bother me right now. I just wish I could wear make up without the fear of my skin reacting.

Here are a couple of random unflattering photos I took in the car.

I do hope everyone else is doing good.

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?