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Monday, 23 December 2013

Week 3.............In The Thick Of It!!!

Hi Folks.

As the title of this posts suggests Week 3 was certainly the worst week so far after quitting
the "Bastard Betnovate".
I am currently on day 176 of my withdrawal from Topical Steroids, and looking back at the early stages of the TSW I can honestly say I don't know how i got through it! A case of having to i suppose!!!
If you have been following my blog you will know that i spent a few months on the countdown to my withdrawal gathering information and researching how things will be, how my body will react, how it will effect my family and general day to day living. That research was invaluable but the thing it can't prepare you for is the pain, the insane itch, the uncomfortable feeling of getting in the shower, the sore dry skin after getting out or the stinging the moisturiser can cause.
If anyone is reading this post and are planning on stopping the use of Topical Steroids, i don't wish to put you off. Its the best and only thing to do to get yourself better, it doesn't seem that way at the very start but as everyone on the ITSAN website claims it does get easier and you do heal, but not overnight!

I emailed Josh in Australia (redskinrecoverydiary.blogspot) when gathering information and he summed it up perfectly in one of his replies, I hope he doesn't mind me using this:
If you are reading this Josh and you do mind, I can easily remove it.

"All power to you, write off a year or two of your life now, but you will be better off for it.  In my opinion steroids are completely f*#@ed, spread the word, tell your friends & co-workers, let the world know how badly we got screwed by modern medicine!!"

Week 3 saw my previous symptoms get worse, much worse.
Things seemed to be made worse by my sleep deprivation, in this week i was averaging 2 hours sleep in every 24!!
My neck was constantly oozing, i was wrapping tissues around it at night so to save the pillow from getting wet and sticky, it didn't work!
My hands covered in splits on both sides and on the palms I started developing huge clusters of spots, some had pus in, others just clear fluid. picking up a knife and fork felt like i was being poked with pins and needles, painful.
Arms had now developed the deep red sleeve that stopped just short of my palms but carried on wrapping its way round onto the tops of my hands, text book Topical Steroid Withdrawal!!!
The whole of my body resembled that of sunburn and felt like it, I had been red for a while even when using Betnovate but this was different, it looked painful.
So, with my symptoms getting worse, my family could see that my mental health was starting to deteriorate also. I shall leave that subject for next time.

Wishing you all good health, healing and a Very Merry Christmas


Love, light and peace
Siegfried x

3504

Wednesday, 18 December 2013

July 8th 2013..............Week 2

Hi again

Week 2 of my TSW saw a few more extreme symptoms. The worst symptom that shocked me, even though i had done extensive research, was the ooze.
It seemed to be in large areas, all over my body, would dry out and turn into a yellow crust......awful!
No matter what i done to help ease the ooze, ie pat dry, moisturise, put tissue paper on it, it would not stop until it was ready to. Bloody annoying.
In this week i found that my sleeping patterns were completely messed up, the ooze and the pain from the dry skin keeping me awake. On average i was probably sleeping around three hours in every 24hours. To say i was exhausted was an understatement, i was mentally drained yet my body would not allow me to sleep. Sleep deprivation is a form of torture that TSW thrives on!!!!
Other symptoms in this week included:

  • Red rash spreading all over my body.
  • Skin swollen and angry, particularly around joints and neck making it hard to move around.
  • Skin would dry out almost instantly after a shower, flaky dry.
  • Showers would make my skin worse no matter what the temperature.
  • Glands swollen, especially in armpits and groin.
  • Noticed that legs/feet would swell unless they were elevated.
  • Legs aching
  • Eyes would be stuck shut after sleep, not sure if it was ooze, seemed more like a heavy consistency of sleep/conjunctivitis!
  • Severe lack of energy. 
  • Red sleeve started to creep down my arm from the shoulder.
  • Earache 
  • Skin on knuckles started splitting
  • Skin hot to touch.
  • Shivers and feeling cold, bit like having the flu!
  • Deep insane itching on limbs.
  • Skin coming off by the handful whilst in the shower.
  • Ears oozing from the inside.
  • Body temperature up and down, changing from hour to hour some days.



This 2nd week was a hard time for me even though i knew what to expect!





If you have any questions please feel free to email me:
siegfriedkilmer@yahoo.co.uk


Happy Healing Folks

Love, light & peace

Siegfried x


3239

Tuesday, 10 December 2013

Start of Topical Steroid Withdrawal 1st July......Week 1

Hi folks

Have been very lazy, slightly depressed and had very little enthusiasm for keeping you posted.
I now seemed to have turned a corner and have the inclination to start posting my experiences of Topical Steroid Withdrawal.
I apologise in advance for my appalling grammar, spelling, punctuation and inability to explain myself properly. hopefully you will be able to follow me.
I have no particular writing style, in fact i have little style in anything!!!! Ha ha.
I am currently in Week 24 of my withdrawal from the "bastard betnovate" so have a lot of catching up to do as far as blogging is concerned. I have been keeping a diary and taking photos along the way so my posts will now be of a week to week basis until i catch up.


Above photos taken 1st July
(Withdrawal Day)

Week One
For those of you that have read my previous posts will know that i had been planning my withdrawal for several months. My start date was planned for July 1st, for financial  reasons, family and work commitments.
My doctor was of great help in this planning with prescriptions for Tramadol, sleeping tablets etc, he was very understanding considering that he knew little about TSW.
Monday 1st July soon arrived and to say that i was worried was an understatement. It would be the first time in my life that i wouldn't be applying steroids to my skin. This day would also see that back of the Protopic that i had been applying to my face for the previous 5 months.
The first day was uneventful, no change in appearance, although if you look at previous photos i was flaring anyway due to my tapering experiment. Day 2  i started to experience slight pins and needles around my eyes and day 3 i had much the same.
I had a restless night that night full of itching and scratching and didn't get to sleep until about 5am.
I was woken by my 4 year old daughter around 9am, i had trouble opening my eyes, they weren't stuck but swollen, my daughter thought this was extremely funny. I looked in the mirror and could see why she was amused, i looked unusual to say the least! Myself and my wife Paula didn't find it so funny, this was it, the steroid withdrawal had started.
On the run up to the withdrawal day i had been expecting the worst case scenario and had planned to move in with my parents when it started to kick in. Having been using steroid for 35 years we weren't expecting an easy time and if i was to recover quickly we agreed  that complete rest was the way to go, no work, no stress or worries. We had researched that if my body was just left to heal and not have to put up with the stresses and strain of everyday life or use unnecessary energy that it may recover quicker. That was the theory and luckily we had savings and my parents would pick up any shortfall as far as household bills were concerned.
Day 5 saw my skin covered in scratch wounds from the night before and my eyes continued to swell and the pain from pins and needles around them intensified and carried on throughout the day.
Day 6 was an emotional day for the family. I woke up and my eyes wouldn't open for ages, it took a lot of massaging them to get them open. The pins and needles were the worst, annoying and painful, in all my research there was no mention of the eyes swelling. Behind my ears the skin started to split and weep, the skin on my neck and shoulders seemed to be extremely weak, its hard to describe but those of you that have gone through this will understand what i am saying.
Throughout the morning my eyes got worse to the point where i was getting anxious and worried and this was having a bad effect on my kids so it was agreed i move to my parents. A tearful day, not knowing how bad things will get, when i will return home, would the kids want  to see me when i was in such a state, they are 6 and 4 and couldn't be expected to understand what was going on with their dad.
Sleeping at my parents on the first night was not good, managed about 3 hours sleep even with taking sleeping pills. Body had started flaring quiet badly now all over, except my buttocks!!!!
Skin was extremely dry now no matter how much Cetraben moisturiser i applied.

The photos below were taken Day 6. (Don't laugh at my taxi belly)!!!

Happy Healing Everyone

Love, light and peace

Siegfried x














3189

Tuesday, 11 June 2013

The Understanding Doctor

Hello friends

This is just a quick post as I am working and I really don't like typing on my iPhone.
I had an appointment this morning to see my doctor who i think is a fantastic bloke, and I shall tell you why!
This is the second time I have seen him since finding out about TSW and Red Skin Syndrome. The first time I saw him was back in February this year, it was to show him my findings on the Internet of my suspected condition. I was expecting him to palm me off with a load of medical facts and the facts I had found had no grounds, but I was a little taken aback when he turned round to me and said
" well Siegs, I can understand the thinking behind it, the steroid creams are not a long term solution. It's not something I have ever had to deal with before or even heard of, so...... you're the boss, you're the one with the knowledge and the know-how, what do you want me to do?"
I was in shock!!
So I started to explain the pain killers, anti-histermines, sleeping tablets etc that other people had been taking to get them through this withdrawal.
" ok , we can do that, it's not a problem. I will just need to keep an eye on the amount you're using... I don't want you turning into an addict!!"
He is such a down to earth bloke!!
He suggested I come back to him nearer the time I was planning on stopping the roids to sort things out.
That nearer the time was today.

"Come in Siegfried, take a seat........what can I do for you today? "
I was worried, had he forgotten?
I explained about coming back to see him regarding the withdrawal and possible prescriptions for pain killers etc. He had remembered thankfully, he had just forgotten the planned date.

It turned out he had done a little research on TSW himself and then explained to me which tablets he was going to give me to help me sleep, which ones for the nerve pain etc etc.
Wow, what am understanding doctor.
Although he was prescribing these tablets to me ready for when it "all kicks off", he did ask me to call him every now and again to let him know how things were going .
" ...just touch base with me Siegs, this is the unknown for both of us. Hopefully it won't be too
bad for you, although i am concerned. What about infections? Better give you a prescription for some anti biotics for that as well while you are here." I thanked him for all his help, and as I was leaving he said that any repeat prescriptions can be done over the phone if I didn't feel like dragging myself to the surgery!

What an understanding doctor!!!!

Hope you are all well?

Love, light and peace

Siegfried

Monday, 3 June 2013

My skin seriously hates me!

Hi people,
Before I start with this post I would just like to point out that I am typing this via my iPhone, so I apologise in advance for speling mistakes etc. That one was deliberate!

Well, as the title of this post suggests, I have been majorly upsetting my skin. If you have read my previous posts you will know that I have set a withdrawal date from the bastard Betnovate cream for  the 1st July, not long now! I have been tapering down the cream in preparation for the withdrawal, but as a few of you have pointed out it will not make much difference as i need complete withdrawal from the creams for the healing process to begin. Armed with this knowledge have decided to experiment to see the effects of tapering the roids has on my skin, and in a word it has reacted angrily!
I appear to be having mini flares, which I can tolerate, even in the hot weather. I have been sweating whilst playing football with my son, and still the rash is bearable. But, the spots that appear after each flare are becoming bigger and bigger!
These spots are getting so so big that I am beginning to wonder if they are turning into boils! They start to appear as pimples, mainly around the hair follicles and gradually grow until the pressure and heat from them become too much, and the strange thing is that they only appear on my legs.
I am writing this tonight as there is one particular headless spot/boil that is throbbing so hard it is keeping me awake, and I can sleep for England!
I don't try to break them as I don't want to cause a possible infection, however a few of them have split or burst on their own and the relief is unbelievable, it's instant!
The one thing that I have noticed with the few that have done this is that the fluid inside ( sorry for graphic detail here ) is clear and sticky, no yellow as with pustules.
So I have been wondering if these spots/boils are a form of ooze that others get whilst in full withrawal? It is all very strange how this has all happened since tapering off the roids. Perhaps someone out there can throw some light on the subject?
Well that's me for now, I'm going to try and get some sleep now, try!!
Hope this has all made sense and reads ok, as I am not too good at getting my points across where writing is concerned.

Happy healing.

Love, light and peace,
Siegfried




Wednesday, 15 May 2013

Mini flares

Hi all

Just a quick blog whilst I am at work to say about the tapering off the roids.
Have been slowly decreasing the amount I use and how often I am applying it and have started to notice a pattern!
This is the pattern I have been experiencing for the past month;
Day 1- itch like mad
Day 2 -itch just as bad but with a a flare, mostly on neck, top of back, forearms and top of thighs
Day 3 - flare is worse but itch subsides
Day 4 - flare completely gone with softish smooth skin, but still requires moisturising
Day 5- extremely dry skin with spots on areas that had the flare
Day 6 - cycle begins again!

So as you can see a mini flare that is lasting just short of a week.
My thought now is this, I know that TSW requires total withdrawal from the roids but are these mini flares helping towards the eventual withdrawal and hopefully making it a less severe process.
Does anyone have any thoughts on this?

Hope you are all healing well

Love, light and peace

Siegfried

Tuesday, 16 April 2013

Spots

Hi all

I have recently been cutting down on the amount of Betnovate I have been using, tapering in preparation for July. There have been mixed views on whether this does any good or not, my view is that it can't do any harm...........or can it?
I have noticed since cutting down that I have started developing spots, hundreds of the buggers!
They are everywhere, mostly on my legs and hands, some white heads and others with just clear fluid, it's all very strange!
Here are some photos of my hands i just took whilst sitting in my taxi to show you what I mean.

Could it be that tapering the Betnovate has started a slight withdrawal symptom?
Any opinions would be appreciated.


Happy healing
Siegfried x