Thursday, 20 August 2015

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.

Wednesday, 12 August 2015

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.