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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.

6 comments :

  1. This is so similar to what I've been through and going through! It's like reading my own memories xx

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  2. It is such a horrible condition and I feel like all doctors want to do is to prescribe steroid creams. I have visited the doctor in the last week in relation to my eczema and my doctor looked at me as if I were crazy when I stated I do not want to use any steroid creams!

    Lauren x

    www.laurenapowers.blogspot.com

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  3. You are brave and incredible and a true fighter. My eczema and allergies get me down so much and frustrate the hell out of me.
    One day I'm ok the next I feel like I'm allergic to myself. Keep going. I truely believe in healing from the inside. I think I've done irreparable damage from all the steroids and antibiotics.
    Stay strong and keep smiling xx

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  4. Hey there. I'm in the same boat.
    I've had eczema all my life, but in the past 4 months it's spread all over my body. I have a large collection of lotions, hemp oil, steroid creams and vitamins but none of it does the trick. I've recently visited the doctors and have been prescribed prednisone and refered to a dermatologist. I've been on it once before and it worked miracles but only to an extent. After the treatment, the itch came back along with the redness.
    I wake up at night scratching my skin raw and I'm incredibly lucky I haven't had an infection (yet).
    I seriously feel like the only one on the planet with disfigured skin all over my body. There's only so much you can do you improve your skin, so I do believe accepting it is the only thing that's going to help the mind not so much the body.
    I hope a trip to the dermatologist will do some help, however it is my first visit so I'm not sure what to expect. Can someone give me a rough idea of what to expect at the dermatologist please?

    Thankyou for the blog and support.
    Katy

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  5. Hi Jenny,
    Thank you for creating this blog. I've had atopic eczema throughout my life and i would like to leave here my ups and downs of treating this illness.
    I have eczema since 1 month of age, so the visits to the dermatologist came very soon and they kinda controlled it till the age of 7. Yes cus all they now is to control it, its like cleaning the water without turning the tap off.
    At the age of 7 things were wost and my mom didn't want me to take any more corticosteroids as they are bad for you in the long run and we went to a erb physician who said i needed sulfur suplement. I can't precise but i believe 7 years go by with very little to none itchyness. so around 14/16 years the eczema starts reapearing again maybe because of adolescence. So again dermatologists and allergists more pills and heavy stuff. They put me on a regiment, no foam shower gel, specific after bath lotion and 2 creams 1 to use daily and another as S.O.S (this one with corticosteroids).
    It worked for a while, i was only having heavy itchyness during spring. Then it started in the fall too when ppl start having heaters on... and eventually it was a year round thing.
    Being really stressed about this business i decided to go back to this erb physician that got me through 7 years with just sulfur. And he tried, made a full detox of my body and after some erbs to do on daily basis but with no effort. And after this desperation started happening (lol) it was like all was "worth a try". Like everybody here has heard..."have you tried this?" to me was a sacrifice i would endure for the sake of getting rid of this curse haha :p from aloe to kéfir i tried a lot.
    During this process someone suggested i'd try homeopathy. Not knowing what to expect, it was very pleasant and i would advise any of you to try it as homeopathy cures the illness from within. So for 6 month i was like i was cured very very little itchyness on the body. However after that something happend, that neither of us knows what, and it started to come up again little by little but never as bad as it was so homeopathy was still a win. Unfortunatly i had to stop doing it because i went to work on cruises.
    After a little hustle of getting used to the ship life (water, food and etc) the skin on my body cleared completly besides few places like left knee, face and the other side of the elbow (i don't know the name for that). When i came back from the ships everything all over again...little by little so i realised that it had to do with the house that i was a the moment, that was old and very humid plus cat hair :p. And so i changed house to my gf apt and with no effort started to change a bit of my diet. I stop drinking cow milk and changed it to rice milk (very easy to do, after a week you forget how milk tastes like) and also stop eating bread wich i used to eat a lot. What i realised recently was that i also didn't eat these 2 things while i was on cruise... so now i am very stable. Still have itchyness very bearable and i am i no medication, some hydration cream and thats it.

    Hope this helps some of you, as it helped me to share.
    Most important to take from my experience was:
    - Don't be affraid to try alternative medicine
    - Be willing to try and change your food regiment.

    Best Regards,

    Rui Lourenço

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  6. Hello Jenny,

    My hat is off to you, dear girl. I, too, suffer from eczema, but as much as I have suffered it pales in comparison to your fight. Finally, after 20+ years I have found a cure for myself, be it a 7 month hiatus or not, it has been working for 7 months without a hitch! I have done so much research, I am now a walking encyclopedia on the subject...do this, don't do that... In my extensive research I came across a bit about nickel allergies. I began by cutting high nickel foods out of my diet and had some quick results. So, I discussed it with my allergist. I am on allergy shots and have been for some time...3 shots, twice a week for normal seasonal allergies. There are no shots for nickel allergy unfortunately. Only with a 72 hour patch test, it was dramatically confirmed that I am highly allergic to nickel. I have more recently learned that as much as 20% of the world-wide population of women is afflicted with a metal allergy.

    So, I took earnest to my journey and now 7 months later, I am almost completely free. Most all of my symptoms are gone and the painful stigma has completely disappeared.

    I want to share my good fortune with everyone afflicted. If you have not tried to eliminate nickel from your diet and have never been tested, I encourage you to do both. It could change your life forever, as it has mine and so many people I have shared this with already. If you have any questions or would like further information, I have compiled some simple instructions that I would love to share with you and any of your followers.

    Your friend in the cause,
    Rhonda
    lovinlife1717@yahoo.com

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