Sunday, 20 October 2013

Good news for all who are going through TSW

Well it’s been seven months since I made the decision to stop using topical steroid and protopic cream.  The question is has it all been worth it?  The answer would have to be one big fat yes!!  I can honestly say it’s the best decision I have ever made. 

From those initial terrible first couple of months of withdrawal my skin has continued to improve day by day, with the occasional bump along the way.  My skin is now the best it has been for years.

·         Glands have gone down
·         Level of itchiness has improved
·         Only my neck, wrists and on occasion my arms are affected
·         I no longer flare after I drink alcohol
·         Flares are fewer and a lot less extreme
·         I’m back to working full time
·         My skin is not getting in the way of what I want to do
·         My skin texture has improved and I am using less and less Vaseline
·         My skin seems to produce more oil

I have noticed subtle differences too:
·         I can now wash my hair in the shower without the shampoo irritating my skin.  I hadn’t been able to do this for the past few years
·         Being able to use smelly sprays etc on hair without a reaction
·         Using make up without it irritating my skin
·         My lip are not as dry as they use to be
·         I no longer have a problem with dandruff
·         I can sometimes wear my hair back, before I would always wear it down with scarf to cover the damaged skin

Don’t get me wrong my skin is not perfect.  I still get mild flares affecting my neck and wrists.  I can understand my neck as this is where I put the majority of steroid cream on daily for years.  However my wrists for the past couple of months are cut up and get itchy which is new to me as I never had a problem with this area before.  Oh well I’ll put it down to the bumpy road which is TSW.

Stay strong everyone who is going through TSW!

Friday, 14 June 2013

Damn you itch!!!

Damn you itch your driving me crazy...  please please give me a break from this persistent bloody  itch!

It's the small hours of the morning and this crazy itch has raised it's ugly head again.  I scratch one spot and the itch jumps to another, like it has a mind of it's own.  It's so relentless it's exhausting.  I'm just waiting for the exhaustion to kick in and finally free me from this terrible bloody nightmare.  I must look like I have lost the plot seriously.. I want to scream!!!  Bugger off and leave me alone!!!

Tuesday, 28 May 2013

Day 86

I was sitting in the back garden earlier today enjoying the sunshine pondering thoughts.  It dawned on me how far I have come over the past few months.

I remember an incident at work a month before I topped using topical steroids.  My skin had been playing up a lot around this time.  I was having horrible face flushes where my skin would go blotchy red and irritated.  On this particular day I was feeling self conscious and more fragile than usual.  I work in community arts with people with learning difficulties and had been putting up with more comments than usual.  The likes of 'what's wrong with your face'  and that sort of thing.  I was answering the obligatory explanations and answers as tiring as it was.  I remember catching sight of myself in a mirror that morning and burst into tears.  I ran out of work sobbing hysterically.  It may sound dramatic and it was.  I guess it had been building up to this point for months and I cracked.  It was then I realised I would do anything it took to improve the state of my skin and my deteriorating mental state.

So here I find myself 4 months on and 86 days into TSW.  I'm hopeful and to be hopeful is something I never had prior.  Having been told by numerous dermatologists and doctors that I had chronic eczema that would gradually worsen over time and there wasn't a lot I could do about it.  Other than put up with it and be prescribed harsher more potent drugs.  At least with this road I'm on, as bumpy as it is, there may be light at the end of the tunnel.  Rather than a life time of irritation and upset.

Wednesday, 8 May 2013

Day 65

Alcohol for me is a definite no go.. much to my annoyance!  Not saying I'm a raging alcoholic or anything however I do miss being able to have a few drinks without waking up with a red blotchy inflamed face.  I have learnt the hard way! I will just have to be patient for the now, it's not worth it as I realised last Saturday night :(

On a brighter note here I am at Day 65 well over two months into withdrawal woohoo!!  I am continuing to see improvements.  I may flare for a few days though the flares are easier to manage and less extreme.

Arms are no longer red and inflamed.  I now only have topical steroid induced eczema on the inside of my elbows and wrists.

Hands have a few small red blisters, nothing that causes me to much bother.

Backs of knees which use to have a redness and dryness spreading down the backs of my legs have all but cleared.

Face is not as pink as it was though I can still flush during a flare.  I still have a persistent area above my lips and sides of nose that gets dry and crusty and is slightly red.  This area is improving very gradually.  I am still avoiding make up as I feel my skin is still too sensitive to deal with the chemicals.

My neck is the worst area.  The skin on my neck has been discoloured and scarred for the past few years due to topical steroids, scratching and staph infections.   I am hoping this will disappear eventually, I'm guessing this will take a long time though.

Chest has continued to be inflamed throughout this process.  It does seem to be improving gradually.  It is my chest, face and neck which seems to be the worst areas now during a flare (where I applied the most steroids).

Backs or ears have remained oozy and cut up since starting the withdrawal, again improving slowly.  Ooze has pretty much stopped happening everywhere else which is great.

My glands are still up and down..  I am not too concerned with this as I am hoping they will go down eventually.  My glands have been like this for the past year really when I was still using topical steroids.

Dryness has been improving also.  I am no longer shedding near the amounts I was in the first  6 weeks.  I have stopped having to wash my bedding every other day and continuously hoovering.  My neck and face remain the driest areas (where I used the most topical steroid) I am putting on Vaseline twice a day.

Itchiness is not as extreme as it was in the early days of withdrawal.  I still get itchy usually at bedtime or during the night.  I take antihistamine before I go to bed to help me sleep.  I am not waking up with crazy itchiness as much as I was thought it does happen occasionally.

My bodies temperature is no longer fluctuating.

So I am overall happy with my progress.  I have continued to show improvements since the initial terrible flare and am optimistic for the future.  It feels nice not to have to deal with the tiring daily ritual of applying nasty steroid ointments and smothering liquid parrafin on continuously.  Which I was having to do prior to stopping and the eczema and it was still spreading and seeming to get worse!

I am starting back at work soon which I am anxious about in case my skin gets worse due to living a more stressful life.  I wonder if my progress has been so good due to the fact I am having an easy time of it with minimum stress.  I'll keep you posted and let you know how it goes as well as adding some more update photos.  Good luck to all of you going through TSW x

Saturday, 20 April 2013

Day 47 List of Symptoms

Not happy today.. while my family are all going out to to a family get together to see my little baby cousin for the first time I am sat at home feeling miserable.  The sun is shining and I have allowed TSW to ruin what could have been a lovely day.  Having spent another night clawing at my itchy skin till it becomes red and oozing I just don't feel like doing anything.  Yesterday I probably looked no worse than I do today yet went out met friends and had a great day out in the fresh air.  I think this is just going to be the nature of the withdrawals.  Some days you can be brave and overcome your insecurities and other days you want to hide.

I think I'm going through another flare at the moment all be it nothing like the initial.  Symptoms I have  experienced on and off are:

enlarged glands
temperature fluctuation
intense itch
very dry skin
red flushing on face
red spots that look like a rash
inflamed skin

I'm going to try and not get too down about given into TSW today.  On reflection my skin is gradually improving with ups and downs along the way.  I have to remind myself that I am less than seven weeks in and I know progress is slow.. then one day in the near future TSW will all be a distant memory like a bad dream I care to forget and I'll jump for joy and appreciate all life has to offer.. promise!!!


Friday, 12 April 2013

Pic's from week 3

These pictures were taken around week three of steroid cream withdrawal.  Note the dryness and pink tinge to my skin.  The scabs you can see are from scratching.  I would like to add I'm on week five now and my face is slowly improving each day. 

Thursday, 4 April 2013

Day 33

I'm so happy that I am now over the first month of withdrawal from steroid cream.  Thought I would give a quick update on how my skin is doing.  I have to say I have been pleasantly surprised that my skin has been improving slowly each day.  I haven't had another flare like the first 1/2 weeks.  So I have been making the most of the improvements by going out and meeting friends.  It is at the back of my mind that a bad flare may be around the corner so I need to take advantage of the present.

My skin is still painfully dry and I'm still shedding lots of skin.   I have only been using vaseline which seems to be doing the trick.  I find as long as the area isn't flared the skin seems to tolerate the vaseline.  Nights have been a problem with the dreaded itch!  I have been taking sleeping pills on particularly bad nights and antihistamine to make me drowsy.  I usually wake up for an hour or two during the night scratching.  I am trying not to give myself a hard time about scratching as I am aware of how quickly skin can heal.  Problem areas are mainly where the most steroid creams were applied although I still have a red rashy area on the backs of my legs where I never applied any steroids.  My arms are still quite cut up though not as red and inflamed as they were initially and my chest is till causing me problems.

Through this experience so far I have to say I have had a lesson in vanity!  Going out with visibly red blotchy dry skin with no make up and hair scrapped back has been a challenge.  I try to remind myself that it won't be for ever and anyway people are far to consumed with there own issues to be bothered about my appearance.  At the most they may think to themselves 'oh look she has a problem with her skin' so what, I can deal with that... it could be worse a lot worse!

I'll post some progress pic's up soon!

Wednesday, 20 March 2013

Day 16

Progress is slow however I do have my good days as well as the bad.  I find mornings are the worst time as I have to deal with the aftermath of a night spent scratching.  I do try my best not to scratch during the night by wearing cotton gloves and taking antihistamine that makes me drowsy.  No matter what I do though this crazy itch takes over.  In saying this late mornings and afternoons are my best times where I am the most comfortable.  Probably down to the fact the vaseline I use to moisturise  is allowing for more movement and I am active so therefore distracted from scratching.  My problem areas are mainly my face and neck (where I applied steroid creams) my arms have slightly improved and have been over shadowed by my chest area which is red raw and sore.  I have also noticed the red/blisters have now spread down to my legs and are particularly bad behind my knees.  Again, areas where I have not had eczema since I was a child and at that nowhere near as bad.  All the symptoms keep pushing towards steroid cream withdrawal and not worsening eczema.  Even though this has stopped me from continuing with my normal daily life I am still positive that I have made the right decisions for the long run.  I can't wait for more improvement over the coming months so I can get on with living and enjoying life!

Wednesday, 13 March 2013

Day 8

Face/neck still improving, have competely shed a layer of skin in these areas and has left smooth pinkish skin in it's place.  The redness is still spreading, it is down to my hands and stomach now.  My arms are very sore and resorted to taking painkillers again to try and help with the pain.  As they are so dry it is becoming difficult to move them.  On the plus side that is me a week down!

Pictures show you how the blisters/redness is spreading down my arm and hand.  I never had eczema in these areas.  This is a well documented steroid cream withdrawal symptom.

Day 7

Face/neck continuing to shed, showing signs of smooth skin underneath.  It amazes me how quick the appearance of the skin can change, this gives me hope.  There has been an improvement with the swollen eyes calming down.  It seems that the worst areas are now my chest and arms as the red rash is spreading and causing the skin to become red, sore and dry.  Spreading to areas I never use to have eczema interestingly enough!  Clothes are becoming uncomfortable so resorting to wearing large baggy T shirts and leggings.

Day 6

Think it can't get any worse and it does!  Face/neck continuing to shed, will have to be careful as the dryness is creating cuts in my skin.  Redness/rash is spreading down arms now.  For the last couple of days I have been mopping around the house feeling sorry for myself.  In spite of this  I am still determined and looking at the long term aim.  I can hack this!

Above is a picture showing my neck.  You can see how dry and sore my skin looks.

Day 5

Today my worst areas are my face and neck, where I put most of my steroid creams on, are maybe not as red though very dry and skin tight.  Can't seem to even tolerate washing this area as skin is so sore to the touch.  Seems to be worse in the mornings and becomes more bearable in the afternoons.  I took  painkillers  and drowsy antihistamine.  The first month or two is apparently the worst for withdrawal so I need to grit my teeth and get through this.  By evening time skin on face/neck is starting to shed.. god I feel unattractive :(

Day 4

Oh dear, aware of oozing during night, out of my ear too!  Eyes still swollen, skin oozing in folds of skin, dry patches, red/sore skin.  Put 50/50 on and ping bright red inflamed skin burning!  Sat at back door for an hour to cool skin down (march in Scotland brrhhh!) and frozen peas as ice pack. Not pleasant skin is obviously not tolerating this anymore going to try Vaseline as this was recommended.  This withdrawal is brutal!!!  Taking lots of antihistamine.

Day 3

Wow what a morning!  Woke up scratching and aware of skin dampness, maybe this is the dreaded ooze!  Looked in mirror eyes swollen, skin has a thick appearance.  Went for a hot shower big mistake! face red raw, swollen and inflamed problem areas on body the same.  Skin hurts take an antihistamine and wait for skin to calm down.  Midday my face looks shocking felt tearful and panicky.  Did not think this would happen so quick!

Symptoms so far: inflammation, burning skin, swollen puffy eyes, itchy, rushes in body (probably trying to cool my system down), glands up, broken skin, low mood

Day 2

Feeling rather itchy today, always do though!  My problem areas are looking slightly worse.  Put my usual 50/50 on to moisturise and this seemed to aggravate skin.  Skin looking red and angry.  Thank goodness I don't have to go into work today cause this would be  classic panic mode.. pressure is off phew!

Day 1

So today marks the first day of no steroid/elidel.  Feeling apprehensive not sure what to expect especially after hearing how hellish the withdrawal can be. Have everything in place.  My dermatologist and doctor have backed me and signed me off work for 2 months, even though they don't understand why I am doing this.  I have had years of upset and agitation with my skin and I owe it to myself to do this and hopefully gain the benefit further down the road.  So theory is if I stop using steroids eventually my skin will return to it's former state as it was when I was a child.  A little dry and perhaps sensitive but livable and not impact on my day to day life too much.  What bliss that would be!!!

Tuesday, 12 March 2013

My Background & Story

I have been looking for an answer for some time now to explain my worsening eczema I think finally I have found the my answer.. addiction to steroid cream!  To give you some of my background, I have always had atopic eczema, as a child it was never too much of an issue for me.  I use to get patches behind my elbow and knees, very mild.  As a teenager I remember having dry sensitive skin and was allergic to some animals.  I think I started using steroid creams in my late teens.  Usually I applied the creams sparingly and not very often.  

Fast forward to the age 27 and I developed an allergy to a preservative found in many products including my oilatum and moisturiser I was using at the time for my dry skin.  It took me a while and patch testing to figure out this was the case.  Anyway as a consequence my eczema took a turn for the worse and I was admitted to hospital where strong steroid creams were applied all over my body.  It was around this time that my steroid cream use increased.  I remember starting to get small patches of eczema behind my ears and on my forehead.  I started using hydrocorticone and eumovate on these areas.  The eczema on my face and neck would improve initially though always return a little worse.  I was now using the steroid creams every day.  I went to a dermatologist and said I was concerned about using the steroids daily on these sensitive areas and he prescribed me Elidel.  

Over the next few years I continued to use either steroid ointment or Elidel daily on my face and neck.  I noticed my skin became more sensitive in these areas I couldn’t tolerate anything on my skin other than 50/50 (liquid paraffin) to moisturise my increasingly dry parched skin.  I also had some nasty staph infections on my face during this time where I had to take antibiotics to clear the infections.  I was getting to the stage where I felt like the creams were not working anymore and last September my eczema started to spread to my upper body, back and arms.  All areas that had not been affected before!  I could not understand why this was happening and started to apply stronger steroid ointments to these areas.  It felt like I could not gain control or manage my skin anymore.  From then on I was on a mission to solve this problem which led me to changing my diet, chinese herbs, acupuncture, not using shampoo yuck.. the list goes on and the eczema still remained.  This lead to much frustration and upset especially when I had to go into work and face the world with red inflamed itchy skin.  

It wasn’t until last month that during researching online and reading numerous blogs and forums that I finally found the answer that I had been looking for and had expected all along... my skin was addicted to steroid cream and causing the worsening eczema rather than helping. The solution stop using steroid and Elidel cream straight away and deal with the horrible withdrawal over the next few months and in hopefully a year or two my skin will have returned to how it was before I started using steroid creams.  So I decided to start a blog in the hope of helping others who are experiencing similar issues.  The story begins!!!