Thanks For The Award!

I had a lovely surprise today. In the post, there was a large parcel and in the parcel, there was a trophy!

I am really grateful for such a lovely award and recognition for the many hours I have put into raising awareness about steroid cream addiction and researching articles online.

Thank you Itsan, and congratulations to all the other volunteers who won an award this year too, including many of my fellow bloggers who work extremely hard supporting those suffering from steroid rebound.

Getting Better Every Day (photo)

Now that the sunny (but cold!) weather is here, my skin is just getting better and better. Here is today's photo!

I really feel like I am almost at the finish line! The redness has gone and I have just got a pale pink rash left, which is barely noticeable. My worst area is still around my mouth and I need to use lots of moisturiser on my lips.

A downside of the sunny weather is that my skin has been hit by the cold sore virus, which is activated by UV light. You can probably make out a reddened area just inside my nostril on the left of the picture and I also have a couple of blisters on my chin. Thankfully, they are healing pretty well and are much less severe than they were when I used steroids on my skin, as the steroids would damp down my natural immune response.

We went to Center Parcs at the weekend to celebrate our wedding anniversary. TSW did not get in the way of anything. I was able to go for long walks in the forest, go swimming and even take a hula hooping exercise class. Although I broke out a sweat, my skin did not feel irritated or sore as it had done previously. I was worried because the bed had white sheets and white pillowcases, but my skin behaved and didn't leave any blood or ooze on the sheets.

Like I said, the weather is still very cold, so unfortunately, I cannot bare my arms yet when I go out, in order to get the benefit of the sun on my inner arms.

Of course, I am not 100% healed, but at the moment, I am living life normally and am not impeded by my skin, which makes me incredibly happy.

I hope this post gives hope to all those starting on the TSW journey that things CAN get better. The skin has an amazing ability to heal itself when it is left to get on with it.

The Sun is Healing My Skin! (photos)

We are still getting bits of sun in between the clouds and every time it shines, I get outside to enjoy it. The effect on my skin has been amazing.

After 3 weeks constant oozy neck at night, I finally had a break and it was wonderful. All the oozy bits seem to be drying up and my skin has a lot more flexibility. It doesn't feel dry now, it feels smooth.

Here are today's photos and I hope they give people a bit of hope that they WILL heal!

My skin is a lot clearer and less pink. it is not red anymore. In fact, because of the sun, most people have got the same colour skin as me now; white with pinky tones!

Here is a slightly side-on view. The red bits on my chin are where I have scratched in my sleep, otherwise my face would be quite clear. Blotching is diffuse and minimal. The skin feels silky smooth and supple, not at all tight or dry.

My neck was awful a few weeks ago, with oozing every night. It is starting to heal. The skin is returning to normal.

I'm so happy at the good effect the sun has had on my steroid-damaged skin! I feel like full healing is within my grasp at long last. I honestly hope I am done flaring now, as that last neck flare was crazy.

Sunshine!

Big news: The sun actually SHONE on Saturday. Shock horror.

I took advantage and got out in the sunshine. Grab it while you can, I thought.

I stayed outside all day, painting the fence, painting the playhouse, gardening and reading. I even had my dinner outside.

The next day (cloudy), I could see that the sun had helped my skin. It felt a lot better and was less red. Unfortunately the sun has gone again. That's probably it for this year now!

Will post some photos soon, but I have the decorators in and they are going to think I'm a loony if they see me taking photos of my face and putting them on here.

Potency of Topical Steroid Creams

Ok, I've decided to go all scientific on you all today (Sorry, I've been reading too much of Miss Kitty's Blog!) and talk about steroid cream potency.

I think this is an important subject to address and I base this on the fact that I was very ignorant about this subject up until recently. Yes, I knew that steroid creams came in various strengths and that different parts of the body absorb them in different ways.

The three main creams that I used over the years were Hydrocortisone, Eumovate and Betnovate. I knew hydrocortisone was mild enough to be sold over the counter and the only cream that doctors recommend to be used on the face, but how to the other two compare in strength? Well, I presumed that the Eumovate was a bit stronger than the hydrocortisone (and still used it on my face!) and that the Betnovate was stronger still, but had no clue how much stronger, maybe four times as strong? Boy, was I wrong.

According to Demnetnz.org, steroid creams come in a range of increasing potencies. The chart on their site is more useful than others I have seen because it actually compares the creams with hydrocortisone to show how strong they are.

Hydrocortisone is classed as a mild steroid and is on its own in Group 4. Bear in mind however, that people have become addicted to hydrocortisone cream over a prolonged time period, so it can be by no means considered "safe".

The next class is Group 3, the moderate steroids and includes my old friend Eumovate (Clobetasone butyrate) and another cream called Triamcinolone acetonide (Aristocort™ Cream/Ointment, Viaderm KC™ Cream/Ointment, Kenacomb™ Ointment).

Now for the shock: These creams are 2-25 times as potent as hydrocortisone! Ouch.

Group 2 contains the more potent steroids, including Betnovate, a cream that I dutifully slathered on my face, against doctors orders for over a year. These include Betamethasone valerate (Beta™ Cream/Ointment/Scalp Application, Betnovate™ Lotion/C Cream/C Ointment, Fucicort™),Betamethasone dipropionate (Diprosone™ Cream/Ointment, Daivobet® 50/500 Ointment/Gel),Diflucortolone valerate (Nerisone™ C/Cream/Fatty Ointment/Ointment), Hydrocortisone 17-butyrate (Locoid™ C/Cream/Crelo Topical Emulsion/Lipocream/Ointment/Scalp Lotion) , Mometasone furoate (Elocon™ Cream/Lotion/Ointment)  and Methylprednisolone aceponate (Advantan™ Cream/Ointment)

These steroids are a staggering 100-150 as potent as hydrocortisone. This came as a major revelation for me because I did not realise just how strong they were. In other words, my twice daily slathering of Betnovate was like putting 200 applications of hydrocortisone on my skin. No wonder my skin is messed up.

Now for the big guns of Group 1. These include Clobetasol propionate (Dermol™ Cream/Ointment) and Betamethasone dipropionate (Diprosone™ OV Cream/Ointment).

You may want to sit down for this. These creams are up to 600 times more potent than hydrocortisone. and sadly, these very potent creams are commonly prescribed to treat eczema by dermatologists. Why? Because the weaker stuff is not working...

When these fail, dermatologists have no choice but to supplement with oral steroids like prednisone.

It also really matters where you apply the creams. The following chart is taken from the same site and shows absorption rates for various parts of the body:

Forearm absorbs 1%

Armpit absorbs 4%

Face absorbs 7%

Eyelids and genitals absorb 30%

Palm absorbs 0.1%

Sole absorbs 0.05%

So use a strong steroid on your eyelids and you are asking for trouble....

The site also goes on to explain that 500g of hydrocortisone a week is enough to cause adrenal gland suppression, which may lead to a more serious condition called Cushings Syndrome.

I hope that this research will help you to understand better how steroid creams vary in strength and potency. A worrying trend indeed. Ever wonder why eczema is a "Western Disease" and rarely occurs in Third world countries? Well, we "lucky" folks in the west have better access to medicines like these....

Update at Nearly 17 Months (photos)

OK, first of all I want to give a BIG thank you to Kristina over on the scratchymonster blog for sending me my own copy of the book we have been working on together- "Taming the Scratchy Monster". I had the e-copy, but the print copy is absolutely fantastic. It will be available on Itsan.org soon. So get 'em while they are hot!

Here I am, looking rather smug with my precious copy of our book.

 

 

 

Anyway, I haven't posted on the blog for a while as the kids have been off school for 2 weeks and have totally addled my brain. They are all finally back today (yay!) so I get some "me time" and more importantly, some blog time! Sorry to all those who left comments wondering where I was. You will be pleased to know that I am still alive and kicking (just about!).

 

My skin has been in a bit of a stagnant phase. It flared for a while but now seems to be slowly healing again. The fact we got some sun yesterday was a bonus. The harsh UK weather has set me back a lot.

So here is my pinky face! The flaring has died down, but I am still a bit pink. I really believe that this will die down when we get more sun. All things considered, it is not bad at all and a vast improvement on the last lot of photos I put on here.

My hand isn't too bad. There is a bit of excess skin on the wrist which has been very itchy and some tiny watery blisters on the palm, but generally the area is very good. Word of warning though; I tried baking some bread at the weekend and my hand went crazy itchy kneading the dough. I don't know if it was the flour or the yeast, but I won't be doing that again.

Here is my arm. Again, much improved. There is an area of diffuse redness where I have scratched, but nothing like the infamous "red sleeve" that plagued me in the early months of withdrawal. The oils are slowly coming back to this area and hopefully I will be able to bare my arms and get some sun on them soon.

My neck is still the worst area, although the photo does not look too bad! It has been oozing at night for about 2 weeks. I am now used to the oozing and it doesn't bother me as much as it used to. I keep waking up with a load of "skin putty" round my neck. This area is a whole shade redder than the rest of my torso, so no going out in a bikini for me!

Healing is painfully slow, but tangible. Flares are deeply discouraging but necessary. I am getting there slowly.

I hope these latest photos encourage people to stick with the non-steroid route, even though it is hard. life is back to normal for me now and I am not preoccupied with my skin as much as I was. Last week I had several big days out with the family and suffered no ill effects at all with my skin. Every day there are more people discovering Itsan and new blogs going online all the time. The truth about steroids is gaining momentum and freeing minds and bodies.

 

 

 



 

Topical Steroid Videos on Youtube

I wanted to draw my readers attention to the fact that there are quite a lot of videos out there on youtube on the topic of Red Skin Syndrome. It as been a while since I popped any video links on here and I would like to share some of the latest video content with you.

 I found a blog on youtube by a lady called Nina. She bravely recorded the changes in her skin on video for people to see.




Anyway, the good news is that Nina is now completely healed. I am hoping that she will post a new video on youtube really soon.

These are just a few of the Topical Steroid addiction videos on youtube. If you visit youtube and type in "Topical steroid withdrawal" or "Itsan.org", you should find a few more. The videos are a good way to really see how the skin reacts to steroids and how it affects real people.

Thank you to those who post videos and vlogs. Keep up the good work.

Special Post: Taming The Scratchy Monster Book

Those who read this blog regularly may remember me mentioning an exciting project that I was working on for a children's book.

Well, the good news is that the book is finally done! Yay!

The book is called "Taming the Scratchy Monster" and it is about a boy going through steroid withdrawal being harassed by a scratchy monster that follows him everywhere and makes him itchy. We all know that feeling-right?

Anyway, here is a sneak preview of the first page of the book....

Cool huh?

The book is designed to help kids with TSW to understand what is going on with their skin, but it could also be a useful tool for adults going through TSW to use with their kids to explain what mommy or daddy is going through.

The Scratchy Monster was invented by my little friend Keira. She is a little star. She went through TSW at 3 years old and is now completely healed. Here is a picture of Keira and her mom proudly holding her copy of the book at the Itsan conference in LA on Saturday.

I think Keira is a complete genius for creating "scratchy" and I am so honoured to be able to write a story about him for her and all the other kids going through this.

The journey from initial idea to final book has been a long one, and luckily I had lots of help from my fellow bloggers and Itsan friends. My initial story was quite long and wordy, and the monster was pretty scary. Keira's mom suggested that I tone down the story to make the monster less scary for the kids and also to make the narrative a lot shorter so that we could use it in a picture book format. She found an AMAZING illustrator called Gloria Pineiro to do the pictures and bring the monster to life. I'm sure you will agree, he looks rather splendid.

The final book is great. Billy, the hero of the story has to fight his way through a red river, oozy swamp, hot volcano and dry desert to rid himself of the monster. It was a great way to illustrate all the yukky symptoms we go through during TSW.

The book will soon be available via the Itsan website. Any money raised from the sale of the book will go to Itsan, with the goal of helping more children like Keira. We are hoping that the book will be available in hard copy and ebook formats.

I am so excited about this project and would like to thank Kristina and Keira and all the other Itsan members who helped to turn an idea into something tangible.

Watch out for that Scratchy Monster....he is a nightmare to live with!

Sad News About My Inhaler Addiction.

Sorry to be full of bad news, but I'm feeling a little down today.

As you may know, if you have been following the blog, I have been trying over the last few months to get off my seretide inhaler, as it contains steroids. Having failed too many times to count, I went through a very slow withdrawal, dropping puffs very slowly over a period of many months.

I got to the point where I was only taking every fourth puff of steroid, with no bad effects. I decided to take the quantum leap to being steroid free and stopped the inhaler altogether.

For a week, everything was great. I had no ill effects from stopping the steroid and my lungs felt strong.

Until a few days ago.

After a week off the steroids, I noticed a little tightness in my chest. I dismissed it at first and just used my blue salbutamol (non steroid) to open my airways and get relief.

The I found I was waking up with a rattle on my chest. It was the same weird rattle I used to get as a kid when my asthma was bad. Still I puffed on the blue inhaler and tried not to think about it.

It got very bad very quickly. I was soon taking the blue puffer every 4 hours, day and night, I was waking up wheezy. I went to visit my mom and on the journey home, could hardly breathe. I could also taste blood when I coughed. it was getting scary. Still, I dug my heels in. I was desperate to remain steroid-free.

Last night, I went to bed and took the blue puff before bed at 10:00. I woke up at 1:00 a.m. all wheezy and rattling. I took 2 more puffs and tried to get back to sleep, but I kept coughing. I woke again at 4:45 gasping for breath.

Enough was enough.

I gave in and took the steroid inhaler.

"Magically" my asthma symptoms vanished instantly. My brain may want to minimise steroid use, but it seems that my lungs crave them.

I am shattered and exhausted after having broken sleep for the last few nights.

I am doubtful if I will ever manage to get off the steroid inhaler completely. Maybe the best I can hope for is to drop it down to the minimum level I need to survive, maybe one in four puffs again.

This is like a kick in the gut to me. I hate being so dependent on steroids but I need them to breathe, so what's a girl to do?

Anyway, after that miserable tale, here is some good news. My skin is actually doing well! I will post some photos when I get the chance. My face is clearing nicely from the last flare.

Also, please check out these AMAZING healing photos from a lady who healed after 9 months of steroid withdrawal (I'm so jealous!), luckily, she didn't have many years of steroid cream use, so was able to withdraw relatively easily. The pictures are wonderful.

Check them out on this site:
http://klinestopicalsteroidhell.blogspot.co.uk/2013/04/sweet-nina-is-healed.html?showComment=1364894821088#c4849833140608082609

Reach Out and Help Others

This post is directed at those who are going through, or almost healed from Red Skin Syndrome.

Could you dedicate a little of your time to help others? I'm not talking hours and hours. if you have five minutes to spare, much can be accomplished.

There are many, many people out there suffering with steroid addiction without realising it. Just lately, I have been visiting the eczema forums and the stories on there literally make me cry. I read about desperate parents, slathering their babies and kids with potent steroid creams and wondering why they are getting worse, even when talking oral steroid tablets. The world is on steroid overload and it is scary. All I'm asking is that you take a few minutes to share your experiences on an eczema forum. it may really help someone. There are lots to choose from here are a couple to get you started:

http://www.talkhealthpartnership.com/
http://www.inspire.com/groups/national-eczema-association  (be careful with this one. They don't like you mentioning ITSAN!)

If you have more time on your hands, start a blog! If you do, be sure to let me know!

Many of us are grateful to know the truth about steroid creams. Hopefully together we can spread the word and change the world!

By the way, Dr Rapaport, an expert in steroid addiction says there is NO SUCH THING as full body adult eczema. If an adult has eczema from top to toe, there is a high chance it is topical steroid addiction and not eczema.