Thursday, 28 February 2013

Month Two November 2012

For those who are fans of Sex and The City, month two had me looking like Samantha after her dermabrasion. Completely bright red and flaking, peeling, scabbing. If I had the vale hat to go with the look, I may have been able to venture out in public too. But no such luck.  House bound for most of the month. Besides I would be worried if people would smell me from the disgusting smell that was lingering around my body from the sweat.
For this month, my real concern was the extra thick skin (shaggy too) gathering around my knees, elbows, hands, neck and ankles. Looking much like a pug dog which is completely unattractive and depressing. I  have been told by other bloggers that this will eventually go away but to look at your self and see what resembles an old lady is distressing considering Im only 41. Its worse in the mornings after being in bed all night.  I think its the combination of  swelling and scratching.
Part of withdrawing from steroid creams is being extremely lethargic. All I wanted to do is lie in bed, watch tv and sleep.This is from what I have learnt from others is the body working in over drive trying to get the adrenals glands working again so they can produce its own cortisol like normal healthy people not on steroids. Heres a little clip from a medical page about the adrenal glands.

The adrenal glands are small hormone-releasing organs located on top of each kidney. They are made up of the outer portion (called the cortex) and the inner portion (called the medulla).
The cortex produces three types of hormones:
  • The glucocorticoid hormones (such as cortisol) maintain sugar (glucose) control, decrease (suppress) immune response, and help the body respond to stress.
  • The mineralocorticoid hormones (such as aldosterone) regulate sodium and potassium balance.
  • The sex hormones, androgens (male) and estrogens (female), affect sexual development and sex drive.

So people like myself who has been using the steroids for a long periods of time, the adrenal glands stop producing its on cortisol because I was applying it on my skin. During my time on steroids I had very irregular periods which is not like me. Sometimes twice in a fortnight then nothing for months or even 4 times in a month if I was unlucky. I was always 28 days on the dot. Weight gain as my hormones were not balanced and it would not budge if I tried to loose it either. I had many blood tests which showed unbalanced hormones but doctors said I was probably going into first stages of menopause mmmm and at 38 really? I know this can happen but its very rare. Im now 28 days on the dot as normal since stopping the steroids! Other symptoms I had other than the itchy pimple rash ( which was a steroid induced acne) bloated stomach, heart palpitations, fatigue, insomnia, runny nose, infected sinus all the time, white dots on my skin (under the skin), over the top sugar cravings and there were a few other intimate symptoms but I wont mention because its kind of grouse :) I just found a picture of the pimple rash I was talking about too.... I had this for around a year and a half..every doctor told me a different story....

Wednesday, 27 February 2013

Month One October 2012

Well it took a few days to stop the creams after what I was told. It frightened me but excited me all at once. I was basically a drug addict to the steroids and in such a routine of putting it on every day, what would tomorrow bring and how would I cope. The first day was easy, not a problem. I thought this was a piece of cake. Day two, I was getting red and a little nervous but it was bearable. Day three, ok I think Im going to die! I woke up to what I thought was someone else. My face was swollen, I was burning all over my body and hot & cold. My first instinct was to jump in the bath. Some relief. I was on my own at this stage, kids away which was good because I was starting to feel extremely ill. I didnt know exactly what I was in for but I thought well Im going to get well soon and again not knowing how long this would last. I think it was around day 5 I rang my mother in tears asking for help. When she arrive, she found me on the couch shaking, burning red, swollen and I smelt like a dump truck from the sweat pouring out of my body. She was horrified and we called the home visit doctor. She said I had a flare but never in my life have I had ezcema like this. I looked like Id been thrown into a fire and was burnt from head to toe, except for the palms of hands. The upside the pimple rash had completely disappeared but now I had a body suit of fluro red. This was the night I threw the towel in for another dose of Preds for 10 days but no creams.

During this 10 days I started to investigate a bit more and came across a website called . It gave me insight and I found hundreds of others going through the same ordeal. It frightened me even more to see the pictures and symptoms of others but what can I do but "suck it up!" I prepared myself and started again.

Holy crap! Do not do this if you have dependants, you will need a very strong network to get through because most of us are bed ridden for the first two months. I was lucky enough to have an amazing mother who stepped into my shoes and took over. Mum you are amazing! Also consult a doctor if you can find one and get on support groups they are worldly with information to help you through.

Its kind of a blur now, but mostly I remember being in the bath for hours to ease the pain and lying in bed. Eating habits were normal but the weight was flying out the window. Ok at this rate Im going to be Kate Moss before the end of the month I was thinking! My start weight was 69kg and Im 170 cm to give you an idea of proportions. Sleep? Well forget about it, there was hardly any. The sweating kept me up and the itch was insane. If I could of scratched my bones I would have, it was just crazy. I was careful not to use my nails on skin but nails on clothes to help not break the skin. In the end I chopped them off as close to the finger as I could. Then its like torture because there are no nails to ease the itch. Catch 22 yeap!

Overnight my skin became extremely dry, so by the morning I was like the Hunch Back of Notredame getting straight to a warm oil bath. Yes I was a sight! Extremely painful, everything was locked into place until the bath. Then loads of moisturising. Get that vacuum cleaner out too, the shedding skin will be everywhere and for me in a house of floorboards, well the kids thought it had been snowing...  So things you will have to endure are and you may not get everything I did, everyone is different.

* Body temp- I'd have freezing calves and feet, but crazy hot torso and freezing head. But non stop shivering all over..So heat pack on feet with bed socks and wrapped in a blanket while mum was sitting in summer clothes.
* Oozing Ears- Especially at night I could feel dripping coming out of my ears with a cracking sounds. YES foul!
* If I scratched I would oozzzzz a clear liquid. Not infection just wet.
* Flaking skin and loads of it, get the bucket out to prepare your self. I used the vacuum cleaner every morning to clean the bed out.
* Swelling everywhere. This made it difficult and painful to bend my knees and elbows. Neck was stiff and hands too. My ankles would blow up and would throb, especially at night.
* Weight loss..yippee for those who need to loose it and for those who dont make sure you eat properly and keep healthy. Keep an eye on your weight loss so you dont get to underweight.
* Itching and burning of the skin. You may look like a cherry tomato
* Shaking like Elvis. I couldnt work out if I was hot or cold at times.
* Lymph Nodes- Mine blew up to golf balls and were painful and throbbing. I have them everywhere.
* Hair Loss- girls prepare yourself, your hair may start to thin.
* Clothes- I couldnt tolerate anything but pure cotton on my skin and on really bad days I would walk around in nothing but cotton knickers.
* House bound- feeling ugly and smelly and not being able to wear normal clothes, I found comfort in every TV show I could get my hands on and movies. Facebook was a good outlet too!
*Overall Pain- The pain from the weird tingles and burn was in just terrible. Even to lie down was like having razor blades slicing my skin. Keep those pain killers handy people.
* Looking many years older than you are. The swelling causes huge winkles and creases in  your skin. This will apparently go down as the swelling goes and the itching stops.
*Blurry Vision- For me I got blurry vision. I think it was generally the swelling in around the eyes and the tightness it created. Very hard to blink!
* Sleepless nights- mainly due to discomfort and itch. Ive tried some sedatives but made me more dry in the mornings so I gave up on that and just deal with it.

The 1st photo I have attached is first thing in the morning. So swollen, I look nothing like myself. At times I felt like I had a bad botox job, I could barely open my mouth to eat. Eye brows are thinning there too..ewwwwwww
The 3rd pic, red burning skin, now this really hurts. You can probably see the lines on my neck. This is from scratching, they are fairly deep but apparently go after the withdrawal. Fingers crossed it will. 

The discovery..

Hey there, my name is Megan and Im currently going through Topical Steroid Withdrawals or TSW. Not commonly known here in Australia, so Im wanting to share my hell journey through to healing process. It angers me to no end to think a doctor has over prescribed steroid creams and made me very very unwell when they are supposed to help you. Its also so frightening to think they actually prescribe these drugs to young children and say just slap it on like cream!

So about me,  I've had ezcema since a teenager along with dry skin, but only here and there. Maybe a bit on my hands, creases of knees and arms plus a little on my face. All at different times and very minimal. After I stopped breast feeding my son in late 2010 I broke out with ezcema on my hands.  I had clear skin before this for many years from what I can remember. The hand ezcema was treated with a steroid cream. Just as this went, I had a rash appear on my back which looked more like a pimply rash. The GP said it looked like scabies but sent me to a dermo anyway. He said unmanaged ezcema and prescribed Advantan along with a month tappered dose of Prednisolone. The pimple rash didnt go infact it got worse. It then spread to my butt, thighs then down to my leg. By this time I was beyond frustrated as I knew deep down it wasnt ezcema it was something else but what? I did skin allergy test and the doctor there said I was allergic to the sun! Another coarse of Prednisolone and more creams but still no result even keeping out of the sun. Oh another doctor said I had a severe dust mite allergy. Getting confused and frustrated even more so now.

Off to the dermo again, he got so angry with me because he said it was very unmanaged ezcema. He told me to put it on like moisturiser and keep doing it until he said to stop so I did. He made me feel so stupid. I decided then to do food allergy test and I came up allergic to wheat, rye, barley, yeast, diary all some triggers to skin disorders. Some progress I thought ..After many many visits to my Dermo Doctor and many arguments in his office over the rash, I decided to go and see a man who was a scientist but practised natural medicine. He had one look at me and said it wasnt ezcema, you have cortisone poisoning and its from the steroid creams Im using. He told me the only way to get well and healthy again is to stop using the creams. It will be like coming off hard drugs but in the end you will be healed. This day was the beginning of my night mare and my road to a steroid free body. The pic above is me while on the steroids looking pretty dam normal in the face anyway :)
Im doing this for my amazing children, they deserve to have their mum back to a normal healthy self. And for the doctor who did this to me, well watch out I'm coming for you when I'm healthy and strong again.