2 & A Half Years Steroid Free

As I hit a big mile stone yesterday I figured I'd better make some time to write a blog post on reaching 2 and a half years off topical steroid creams.

Right now I'm really busy with life. I finally have a full time job which I've been doing since the end of September, with two role changes during this time. I've been going to a lot of gigs and having more of a social life. I can't remember my last day of doing absolutely nothing, I always seem to be on the go right now.

I'm still taking Ciclosporin but no doubt I will be asked to come off it soon, but all of my blood tests come back fine each time so my body is in sync with it. I still haven't lost any weight yet but I trust that when my body normalises I will do. My diet is mostly clean but as always, there is room for improvement and I am switching ever more to a vegan diet.

I have also worn make up for long periods on a couple of occasions without any over-damaging effects. This makes me hopeful that my skin is finally toughening up. My eyelids were one of the worst targeted areas for applying steroid creams and it reached a point where liquid eyeliner would burn and eventually even mascara just applied to the eyelashes would cause an awful reaction. I doubt I'll ever be able to wear liquid liner again but I'm happy enough to get away with mascara. Also my eyebrows look fantastic now.

I've also noticed my intolerance to heat has diminished significantly. I've always had poor circulation in my hands and feet, and also have my lips turn blue, but recently I've noticed that this has switched and I'm much more intolerant of the cold. It got to a point where I was unable to wear layers underneath a coat or jacket because I would come out in hives, but now all I do is layer up because I'm freezing cold! I was a lot better over this summer period of tolerating the warm, but the true test will be going over to a hot country to see how I fare then.

Don't get me wrong, I'm still up and down with my skin but it hasn't prevented me from doing stuff recently and I can't remember when I last took a sick day from work because of it. Onwards and upwards!

Recent photo of me from a friends' wedding wearing mascara, eyeliner and eyebrow pencil.

I would dig out more photos but I can't be bothered to trawl through my phone so this will have to do you for now ;)

Hope everyone is doing well, and as ever I apologise for my online absence.

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!

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.