A Christmas Message to help TSW recovery

This is a Christmas shoutout to all those recovering from topical steroid withdrawal (TWS).  Sometimes you just need a little confidence that it's all going to get better and my friends I promise it will.

See you all in the new year.  Merry Christmas.

Surviving a music festival - Recovery month 14.5

A quick pre-christmas update on month 14 of my recovery from cortisone induced eczema and red skin syndrome.  In this addition I talk about going to a music festival with my friends and being able to handle the highly stressful (on the body) situation of drinking, late nights and general dehydration.



Here's the video of my mates and I enjoying the festival.  You can see a little redness in my face, but I think the bay watch outfits were making it look worse than it was, certainly nobody said I was in anyway red.  #winning.

TSW Cortisone Recovery v Sex Drive

Before I begin, very sorry about the way I filmed this video. I used the iPad for the first time and learned a valuable lesson about how I need to hold it :(

 

 The upside is that I feel incredible, look brilliant and have the best life I've had in many years. What do I chalk all of this up to? Simply getting off those dirty nasty steroids the doctors kept giving me. Power on!

14 month recovery update - Red Skin Syndrome

Red Skin Syndrome Update month 13.5

A letter to Dr Rapaport

I sent this email today, and wanted to share it with you all.  If it were not for Dr Rapaport I don't know where I would be.  Whilst i never actually met or spoke to him, by using the resources he made available, I was able to mentally commit to my recovery and stay off steroids permanently.



Dear Dr Rapaport,

My name is Josh Strawczynski from Australia and I was a sufferer of Red Skin Syndrome.  Thanks to finding information that you published and the many other people suffering from this alfiction, I have been off steroids for 13 months and am now 95% back to normal.  Whilst there is still a little dry skin and occasional rash on my chest, my life is back to normal and nobody except me is any the wiser.

I can't thank you enough for providing your research to the global community.  If it were not for you I would still be searching for a miracle cure to something that my doctors and dermatologists were inadvertently doing to me.  I consider myself extremely fortunate to have found you and your work and will remain indebted to you for all my days.

In my recovery I have kept a blog, mapping the progress with images and videos and through this have made contact with many many other sufferers, and helped to diagnose a few people also in the same boat.  It's only a drop in the ocean, but I'm glad to be sharing your work to help others and will continue to support as best I can.  My blog is http://redskinrecoverydiary.blogspot.com and as I said, there is excellent footage and imagery there.  I'm also a public speaker and insanely positive about life and the whole recovery process, so if there is anything in there that can help you, by all means you have permission to share it.

I just wanted to drop you a line to say thank you and if there is anything I can do to help, just let me know.

Josh

12 month before and after - Cortisone induced eczema

Cortisone Addiction Recovery - Month 11.5 update

Recovery from cortisone addiction which sent my skin very red and very dry for years and years is near the end!! For so long I was told I had terrible eczema, when in fact all I had to do was stop taking cortisone. Now 11.5 months off the steroids and I'm looking and feeling fabulous!!

Coming to a beach this summer

A friend sent me this and I couldn't help but share it. I think I'm about 6 months away from being fully healed, and this summer (approx 6 months away) I am going to be brown as a berry!! Throughout this recovery I have continually given myself things to look forward to, to work towards. This is one of those thing!

Cortisone Addiction & Red Skin Syndrome Recovery - Month #10

Looking and feeling great after 10ish months

I'm thrilled to post this latest video, my skin looking absolutely brilliant after ten months of recovery from red skin syndrome caused by cortisone cream usage.  For the first time in a long while there is much more white than red and the full range of movement is coming back into my body.

I'm ever so thankful for those many people who have helped me through and am delighted to be helping everyone else also going through this.

There are still ongoing symptoms including:

• Tiredness
• Small dry skin flakes
• Dry scalp
• Light itching
• Runny nose
• Ridiculous good looks

All of these are very manageable, even if you do get sick of vacuuming constantly.  Overall I'm extremely happy to be back and gearing up for my USA trip in September!

Mainly white skin after 10.5 months of recovery

I cut cortisone out of my system on the 6th of September 2012 and now 10.5 months later I look basically normal.  In that time of course readers and fellow followers will know about the horrible symptoms I went through, but now, a mere 11 months in and I'm basically healed.


Across my journey I've been meeting lots of other sufferers, Aussie's, Americans, Asians and Europeans.  My friend from work introduced me to his girlfriend and immediately we diagnosed her as also being a sufferer.  It is just so common, you wouldn't even believe!

What I take a lot of heart from, is that the cure is all so easy.  All you need do is stop using the cortisone.  Sure there are a lot of symptoms along the way and it's not a pleasant next stage of your life, but recovering from red dry skin is an amazing feeling.

Good luck to everyone

Josh

Back into sport - Cortisone recovery month 9.5

I've been getting back into sport of recent, playing a bit of ultimate frisbee and touch rugby at Albert Park (where the grand prix is held).  Whilst it has been a bit hard on the body to start with, I realised that once the sweat glands started to work, they cleared the dry skin and it all felt great.  In fact, the body is the best it has been since I started.

Good diet and only minimal booze has really helped and I feel like I'm almost at the end of this journey.  To be clear, what I mean by this is that I'm through the bad stuff, now I just wait a few more months for the skin to strengthen and the moisture to come back fully.

To everyone following my progress, please encourage others to do the same.  I've been given a new lease on life and it really wasn't that hard.  I say that in a relative context, meaning of course it was hard, but compared to losing a leg or getting cancer, a year of dry red skin really isn't that bad.

All the best and keep messaging in.

Josh

TSW recovery update, doing it in style after 9.5 months

It has been a rocky journey with some ups and downs, but the TSW recovery is going really well as we pass the 9.5 month mark.  I'm confident that in the next 6 months I will be back to normal, as I am already living a very normal life and no longer get comments about being red.

Vitamin D Tablets - My skins best friend

It probably sounds funny that I live in Australia and need to take vitamin D tablets, but recovering from cortisone induced eczema has seen my shy away from the sun, rarely going out when it is bright and hot and never taking my shirt off to catch some rays.  As such, my vitamin D levels would be low I assumed, and after a few weeks of my skin playing up and being generally red and uncomfortable, I thought I would give them a go.

It's hard to know if it was cause and effect, or if my skin was just ready to improve, but since taking the vitamin D capsules my skin has been much smoother, whiter and much less itchy.  Of course I have nothing to compare this to, so I really don't know if it's fact or fiction, but reading through ITSAN, it seems vitamin D is a winner in the recovery process.

Sunlight is something that ITSAN regularly reports as a successful helper in the recovery process, so it makes sense that vitamin D in any form would be helpful.  Vitamin D helps the skin hold together with a whole realm of necessary functions.  Congruent with this, it's all about balance, and missing any key vitamin or mineral is going to slow down the healing process.

I'll keep you posted on my progress, but this is the best I have consistently looked and felt for some time.

The recovery of red skin continues - 9 months

It has been over 9 months of recovery now and day by day it's getting better.  Internally the body is healing and that extends to the external look and feel.  This video highlights the recovery to date from cortisone induced eczema. Cheers for reading, any questions just comment below.

Is diet causing my red skin flares?

I'm not sure why diet has crossed my mind recently, but I have been thinking about it for a while.  Others like Jake and Lib have gone on the gluten free, sugar free diet and seen great results, whilst there are other recoverers that have maintained a terrible diet.  For myself I've notices my skin colour and texture fluctuating regularly, and whilst I know this is common, I wonder if I can influence it via diet.

Quite red in the face and hands after 9 months of recovery from topical cortisone steroid addiction

To test this theory I'm going to be good for the next couple of week.  Lots of salad, chicken and fish, plain unprocessed foods, no alcohol and minimal sugar.  It will be interesting to see if there is a noticeable difference.  If there is, we can start to investigate if my body is sensitive to certain food types.

I know some people will question why I wouldn't have worked this out earlier, however remember that earlier I would have been constantly exposed to this body stress and hence my body was only showing small signs of flushing.  After coming off cortisone my diet has changed and it's possible that when my body gets a dose of something it's sensitive to, it's creating much more noticeable reactions.

The redness in my body has been mainly concentrated to my face, chest and hands and it's this localisation that also leads me to think that food may be playing a small role.  Of course let me stress that the cortisone recovery is the main problem, we know this, but is food playing some role and can I get a better quality of life if I monitor my food?

Time will tell, stay tuned in readers :)

Short term flare up - Cortisone induced red skin recovery

The recovery from cortisone induced eczema is a long and confusing road.  Your body improves and improves, then all of a sudden it goes bad, takes time to recovery and repeats the process.  Personally I don't let it bother me, I know it's a long term goal and any given day is nothing to measure success by, but it can be concerning to many (including my parents).

Over the weekend my body went from very good, quite white and just a light cover of dry skin, to terrible in the space of one night.  I didn't do anything different, I wasn't any more stressed, or eat anything different to normal, just overnight my skin decided it would get very thin and any scratching or movement would bring moisture to the skin surface.  When I say 'moisture', what I mean is that the skin is so thin that basically the top is being scratched off and the skin is oozing a slick moisture that never seems to stop.... it's pretty gross.

Me after 8 months of recovery, still quite pink in the face

I put a t-shirt over the top of the oozing and this stopped it across the day.  I also concentrated on not scratching at all and of course this helped a lot.  Over the next couple of days the top layer of my skin dried out completely, leaving the skin dry and cracked, but finally after 3 or 4 days, the dry skin peeled away and it's back to quite normal.  The colour is white with a pink tinge and whilst a little dry, it's all pretty good.

I don't really know why this cycle continues to occur, but I know that it's just a matter of time.  Every week is a little better, day by day, month by month I get closer to fully healed.  I am thankful to my amazing family, supportive friends and of course Katherine who bears it all with a smile.

Hope everyone else is doing well, feel free to shoot any questions through.

8 Month recovery update

Well 8 months in and it has been a series of ups and downs.  I had just recovered from a month worth of flare up on my chest when the occasion occurred that I had to take antibiotics, the first course I had taken in about a year.  This brought about an important discovery... I'm allergic to antibiotics.

The result of the allergy was three days of bright redness, swelling and itchiness.  The problem was that because I had to stop taking it, the staph infection that I had originally noticed was given time to spread to took over my entire face, neck and chest with a million pustules.  This rendered me basically bed bound for week, but finally it's starting to go away.

Interestingly the colour of my skin improved dramatically with the use of non-penicilin based antibiotics.  I would love to know the reason for this and will be keen to track the progress once I get off them and the staph has healed.

If you touch my skin at the moment you would notice it's still dry, but a top coat of moisture has started to form.  The key is not scratching, as once you take the top layer off, then layers and layers of dry skin are underneath, it's a matter of not scratching.

Healing continues well, but as always, we just have to wait it out, stay health and positive, always looking forward.

All the best to you all my friends.

Josh

Cortisone eczemas flare up update

Red Skin Flare Up - Month #7

It finally happened, my body finally had the flareup everyone else has talked about.  Jake & Lib from http://eczemahealing.blogspot.com.au had warned me that it would happen, and in Jakes case it was extremely severe and long lasting.  Myself however was much less severe only lasting about one week, but in doing so there were some very interesting body-wide affects.  So what happened?

Last week I noticed that my stomach was playing up, I felt a little ill when I ate, my tummy was having trouble digesting and I was burping and farting a lot more than normal.  These symptoms deteriorated further to the point where I was barely able to use the bathroom (producing very small stool), yet farting and burping non-stop, whilst my stomach was extremely loud as it tried to process the healthy food I was eating.  At this point I want to point out that I was eating very healthy, chewing my food a million times per mouthful and drinking lots of water, so it was certainly something else at play.

No so far I've only talked about my guts, but there was also a reemergence of the red, dry, raised skin on my chest and back.  It was almost an allergic reaction as this flare was only on these areas and was quite pronounced.  Katharine was not all that phased by it, but she did point out that it was quite angry and dry and I always take notice of other people's opinions to validate my own perceptions.

One week in and it has all gone away and back to normal.  I woke yesterday morning to see that it had mainly gone away, went straight to the bathroom and took a very large and solid crap (yeap, couldn't think of a nicer word to use here). The point is that the whole system was working together, it broken together and it healed together.

I've been trying to work out why this happens to everyone, I mean it doesn't make logical sense that all of a sudden the body would go back to being bad after being so close to perfect.  My theory, with absolutely zero credible evidence is that during the 'using cortisone period' the body is storing byproduct in the skin cells or guts or somewhere, and as the healing takes place this comes out and causes a reaction in the body.  I imagine in Jakes case it takes a very long time for this to work through, and in my case there is much less, so much shorter duration.   It's just a theory, anyone else got ideas?

Sorry I forgot to take pictures.

TSW (Topical steroid withdrawal) Advice from Josh

Below is an e-mail I sent to Geoff, a friend who is going through steroid withdrawl.  The pictures Geoff kindly sent me and offered for them to go up on the blog.  Cheers pal.

Picture: Me (Josh) after 7 months of TSW recovery

Hey Geoff,

Thanks for the e-mail, I really appreciate you getting in touch and sending through the pictures.  When I look at them, all I see is myself a year ago and I share your frustration and pain.  It's a frustrating stage because you feel fine, but your skin is holding you back.  I compare it to being in the body of an 80yo man, where the mind is willing but the body is all stiff and sore.  It took me about 4 - 6 months before I was back doing normal stuff.  Initially I found that I just had to go through the healing process and there was nothing I could do to speed it up (first 3 - 4 months), but after that I do have some tips that might help you:

1.) Sun bathing - I could only manage 5 minutes at a time, which I worked up to 10 minutes after a few weeks.  The research on sun light is very strong and really made a difference.  Be wary, the heat will make you itchy, so don't force it, just get sun when you can and be prepared to cool your body down with cold compresses when you've had enough.

2.) Walking - Keeping your body active is vital.  When I'm active I heal much much quicker.  This said, it's important not to over do it.  I avoided all gym sessions and strenuous labour because I didn't want the blood vessels to dilate, that's a recipe for going backwards, but walking and breaking up the dry skin is really good.  It also sends a message to the body to work as efficiently as possible.  Whilst I can't back this statement up with medical facts, it really does make sense.  For instance, have you notices that when you are active your brain functions faster?  Thats because your body is working at a good pace, the hormones are firing and the engine is ticking over.  Spend a week laying on the couch and whilst the relaxation is lovely, the mental cognition will be stuck in 2nd gear.

3.) Pushing through the pain - Just recently (month 7) I've got to the point where my skin colour is largely normal, but there is still a coating of dry skin on top.  When I say dry skin, it's not noticable and it's very fine, so my black suits stay crisp, but it's uncomfortable and if I get hot or raise a sweat I'm scratching at various areas on my body.  What I noticed, was playing sport and actively making myself sweat was itchy and horrible that day, but a couple days latter that problem area healed up and the dry skin vanished.  These patches will come and go and move around the body, but it seems like once an area is healed, it is healed for good.



Now I also want to touch on diet
Not everyone agrees, but the following is based on my experience, research and conversations with others going through TSW:

1.) Eat healthy - Cut out the fast food, white carbs and gluten

2.) Cut out sugar - Processed sugar is the devil, it steals vital nutrients from the body and retards your ability to heal.  Of course you don't have to be hard line about it, but a simple reduction like cutting out soft drink (soda) can make a noticeable difference.

3.) Supplements - If you heed nothing else, do this.  Go and buy Cod Liver Oil tablets.  These, along with Prime Rose oil tablets made a massive difference to my recovery.  The science is clear cut and brilliant, Cod liver oil is amazing for skin. Get on it, not fish oil, or Krill oil, but Cod Liver Oil.

4.) Water - Make sure you hydrate your body.  Drink plenty of water and give the skin every chance to heal


Finally, lifestyle tips that made me feel better

1.) Establish sleep patterns - This really hard to do when your cortisol levels are all over the place like an Indian taxi driver (I thought that was funny joke, sorry to my Indian mates).  I made myself go to bed at a certain time and stay in bed until it was time to get up.  Initially this was terrible, I just couldn't sleep, but over time my body got use to the pattern and I started getting full nights sleep and my recovery sped up.

2.) Reduce stress - Don't look at this recovery as a bad thing, look at it as an opportunity to address issues that you've ben putting off for years.  For me it was stress.  I focused on taking time to relax, meditate, watch TV and crank good music.  I actively felt my body unwind and heal.  IT has been shown that the body heals best during sleep, so the logical extension is to reduce stress and chill the heck out!!

3.) Positivity - It's infectious and it has amazing results.  This advice extends to every aspect of life -> Focus on the end goal, how amazing it will be when you are healed and all the things you are going to do.  I actually wrote lists of all the things I wanted to do when I was healthy again.  In my mind I lived it every day; partying, playing sport, doing a dance class, having coffee out with mates, surfing... the list goes on forever and the coolest thing is, when you get out the other end, you've had a chance to take stock and assess what is truly important to you.  I can't tell you how happy I am right now with my life, love and friends.

4.) Tell people what you are going through - I learned this one late, but after I posted the blog on Facebook and told all my friends what I was going through, I felt an amazing weight lifted from my shoulders.  My family and friends rallied around me and no longer was there a white elephant in the room.  This allowed me to go to work, miss social engagements and go out in public all red in the face... and it just didn't matter.  When everyone knows the score, they focus on the positives of the game.  I believe this very very strongly

5.) Focus on the opportunity - As said under positivity, this is a massive opportunity for you.  Never in your life do you get a chance to just stop and think.  This is the world forcing you to chill out, and think.  They say prisoners remember thousands of obscure memories from their past, gain a deep and profound understanding of themselves and become stronger people for it.  Thing about that for a minute.  Here's a criminal behind bars, and they are achieving a level of enlightenment that most pay thousands of dollars for.  This is your opportunity to follow their lead, reflect on your life, those around you and how you want to live your life going forward... I'm tell you, this could just be the most pivotal moment of your life...Embrace it!

Reading back over this e-mail, I really strongly believe everything I've said.  I will admit that I'm currently sitting in a cafe on Chapel st in Melbourne, Australia and with the music playing and people buzzing around, the grammar probably isn't going to win any awards, but the message is worth paying attention to.  I'm going to post this on my blog, and would love any comments about how it helps, or doesn't help over the course of your recovery.

Stay in touch Geoff and let me know how you get on.

BTW, I'm going to be in Cincinnati & Boston in September.  If there is anything I can do for you then, just let me know.

Josh Strawczynski

Pictures: Geoff after day 36 of TSW recovery

6 3/4 months into recovery

I can only keep it quick today, with Easter upon us I have a busy weekend of fun and adventure ahead. I just wanted to post a quick picture of me today in the office, hair having largely grown back, eyebrows getting bushy and my skin nicely coloured.

Overall everything is going really well, and whilst my skin is still a little dehydrated, I look and feel like a million dollars.

Keep going team, recovery is yours to claim.

Research paper into steroid induced rosacea

I was thrilled today when one of my readers send me this academically credible steroid induced rosacea research paper.  To those recovering from red skin syndrome or any cortisone induced reactions, you will not be surprised at all to read that steroids are bad (even low toxicity ones) and should be avoided.

One thing it does highlight, which I have spoken about with many cortisone users is the constant infections and pustules that occur on the skin.  Since going off cortisone I haven't had this problem at all, but it was something I lived with for about 5 years... a tell tale sign of cortisone usage.

There is a lot more in there, this one is worth a read.  Any comments, let me know.

Note: Special thanks for the article Sarah from Southern Indiana, USA.

Josh's 6.5 Months red skin recovery update

It has now been 6.5 months since starting cortisone steroid withdrawal and I’m finally back to seeing my body in a general white state, with no persistent redness on my face or hands.  I’m careful to stress that it’s not cured, and some days are better than others, but it’s absolutely clear that there has been a massive improvements.  My friend Jeremy told me that I look the best he has seen me in two years (time I’ve known him).  Most importantly, I looked in the mirror today and I felt handsome, this justifies all the hard work better than any gym regime!!

The improvements since starting withdrawls have been clear:

1. Body wide reduction in redness
2. Eczemas symptoms gone
3. Cirrhosis  spots gone
4. Infections no-longer occurring
5. White pustules / boils no-longer appearing
6. Moisture reappearing in my skin
7. Able to drink without going bright red
8. Able to play sport without going bright red
9. Dandruff gone
10. Guts strong and toilet breaks back to normal
11. Water retention (bloating) gone
12. Hair is now thicker and fuller than before
13. Skin becoming much stronger
14. Physically looking younger and more virile
15. Movement and agility improved
16. Can now have hot showers / baths
17. No scratching in my sleep
18. No facial redness / blushing
19. No dry skin on my black clothes
20. Nobody asks me if I’m sunburnt

Image: 6.5 months into recovery

There is still another 6 months to go (at least), but I’m so much happier than ever before.  Thanks to the support of my amazing parents who have helped to care for me, feed me and keep the house clean, I’ve been able to focus on getting better, staying positive and the results have flowed accordingly.

I haven’t had any ‘flare ups’ during my recovery, but that’s probably because I never had bad eczemas symptoms, it was more red rash all over my body.  I would still say I have some pinkness all over me, but it’s not really noticeable, nobody comments on me being sunburnt, it’s more like an Irishman’s pink skin.

Day by day it’s all getting better.  I’m happy as hell and hope I’m helping to inspire you through your own battle.  Always focus on what you are working towards and it will happen!

Hair Loss - How to look good in 60 seconds

Through my recovery all my hair fell out due to toxic shock.  This is really common when you withdraw from certain drugs and the toxins / hormones in your body change.  It takes around 6 months for the hair to fall out, and then come back in full, and to be clear I am talking about all my hair, not just that on my head.

As it came back, I had a lot of holes and patches.  Now I don't mind shaving my hair down, but because the coverage was so patchy, even this looked really strange, so I looked for alternatives to cosmetically patch the situation.  What I stumbled across was a product called Toppik, which is a synthetic hair fibre.  All you do it sprinkle it on, it clings to your hair and thickens it for when you go out.

In my experience it looks great, natural and clings in there pretty good.  Check out the video below where I do it for real.  Keep in mind as you watch the video, that I stupidly had the front door open and my mother was trying to help me whilst also holding the camera, so the result is average.  If you apply a little extra effort, it looks amazing and takes only a few seconds.

Let me know what you all think, or any other helpful ideas.

p.s Eyebrows come back by themselves, there is not much you can do.

Cortisone Withdrawals for beginners

I get e-mails from people in the early stages of topical steroid withdrawl (TSW) almost everyday, so today I've copied and pasted one of my replies for everyone's benefit.  If you have your own thoughts or helpful advice, please comment.


Hi Tom,

Welcome to cortisone withdrawals, it's a bit of a club nowadays.  One of the things to really focus on is the end game (why you are doing this).  Once you commit to withdrawals you will go through some real tough times, but keeping a positive frame of mind and remembering why you are doing what you are doing is essential.  At the end of it you will be a new man and all the better for it.

Glad to hear you have the supliments right (Cod liver oil capsules, primerose oil capsules, Vitamin C powder & zinc helped me a lot).  On top of that I would look at cutting sugar and gluten out of your diet.  These are known iritants to the body and whilst the research is inconclusive, I find it hard to believe that filling your body with iritation is a good thing.  In my opinion you want to give the machine (your body) the best oil (nutrition) in order for it to focus on doing the important stuff.

You are luck you are so young, at 18 you will heal quicker than most.  I would still be preparing yourself for a 12 month battle, and yes the next 6 months will suck, but quitting now is the best thing you can do.  As you would have read, it is going to get worse before it gets better.  Generally speaking the first three months is the absolute worst, but then it improves.

If you've read my blog you know to expect from this steroid withdrawl symptoms article: swelling, hair loss, very flaky dry skin, weeping skin, weeping ears etc.  These are all things you'll have to manage by just waiting them out.  Go to the doctor and get sleeping pill (strong ones), and pain pills & antihistamine.  At times you itch like crazy, but if you can avoid scratching you will heal much faster.

I recommend a very slimy moisturiser like Dermeze or QV intense.  What I found was that ones that sit on the top of the skin kept me comfortable for much longer periods of time, where ones that sink into the skin I was constantly reapplying.  For 3 months I largely lived naked in my apartment, minimising the time I went out and had almost no social outings.  I'm not trying to scare you, but you won't feel like going out much, instead put together a list of good movies and music to chill out to.

I'm hoping you have a supportive family to look after you.  This will make life a million times easier.  Tell them everything, tell your friends, get the elephant out of the room and let people help you.  The more I told people about what I was going through, the easier it was for me.  People rallied around me, brought me food, cleaned my clothes, helped me vacuum (a daily task for dry skin).  They also cut me slack when I needed it, called me for no reason, or made an effort to chat on Facebook at 3am when I couldn't sleep.

One other thing I'm a big fan of and couldn't find a suitable segue for in prior dialogue is speeding up recovery through massage.  I spent a fortune on massages every few days, particualrly when my legs swelled right up.  Pushing the fluid around the body I found to be very useful in helping everything heal.  If you have a family member who will help you out, then definiatley ask them to commit to a daily foot, leg and shoulder rub.  The legs to reduce swelling and the shoulders because you will be constantly hunched over with dry skin, so you need to find a way to release the muscle tension.

Ok, I've got to get back into this client work, the advertising industry frowns on personal time ;)  Hope this has been helpful.  Stay in touch and let me know how you get on.  Also if you haven't read it check out Jake & Libs blog: eczemahealing.blogspot.com & itsan.org + their forum.

Hope that helps pal.  I'm going to post this email on my blog for anyone else that needs help (I'll leave your name out of it).

Josh Strawczynski

Tom

7 March 2013 10:04 AM

Hey Josh.

My name is Tom im 18 from New Zealand and I am now 10 days into my withdrawal from steroids and it is just starting to get really bad. I am just wondering what you used as a moisturiser as at the moment I am using cetomacrogol cream and i was wondering if there is anything better.

I have been reading your blog and it is really great. I have just started to take cod liver oil, Zinc and Silica tablets to try help with my recovery. If you have any other advice you can give me or something that would be awesome.  

Thanks bro. 

Josh's 6 Month Celebration Party

The recovery has now been going for 6 months, it has taken me from persistently red, to scaly and horrible, finally back to somewhat normal.  There is still a fair few months ahead of me, but this party was about getting my amazing friends in the same room and celebrating life.  I'm so thankful to have found a solution to a problem that has been steadily getting worse over the last 10 years, a little pain is nothing compared to the benefits of getting life back.

One lesson to take away from my video's is that life is good, sure sometimes you have to go through a little hardship, but focus on the positive, appreciate the great things in life and know that some time in the future you are going to be dominating this life thing ;)

Here's the party video, hope you like it (keep in mind the images have been tidied up, so I should be a bit more red).

Playing sport after 6 months of red skin syndrome reocovery

Two months ago I would not have thought this possible.  I was stricken with tight dry skin, barely able to move unless I lathered myself in moisturiser after scraping off many deep layers of dry skin from my entire body.  Now after 6 short months the skin is white again, soft and moist and I'm back doing the stuff I love.

It's important to note that I'm not completely healed yet, there will be many more months for the body to get back to 100%, but I'm better than I was before I stopped cortisone steroids (creams and pills).  My skin is starting to get soft and durable again, my body has lots of energy and I can move with absolute ease.

There are still some places that are dry and itchy, they come and go across the body healing one by one.  Interestingly, once healed they go away permanently, so I don't mind when the come up on me.

Below is a game of frisbee I played today, this video documents my colour throughout the hour of exercise.  Usually I would be bright red in no time, but pleasingly I kept my colour quite white, wasn't too itchy or sore and even now 4 hours afterwards I'm feeling and looking good.


Special thanks to my friends at the Real Mufcoy for encouraging me to play: Wallsy, Charlie, Toff, Lisa, Dan, Loz, Bessy, Diana & the others that were there, Ronnie, Joshie & more.

Cortisone recovery update - Monday 25/Feb/13

The recovery continues in a positive fashion, it's on the up and up as they would say and I couldn't be happier.  Over the last month I've been out on the town meeting lots of cool people and getting lots of compliments on my look.  I've also been out with a few young women, none of which have said a thing about my skin or colour which is an amazing improvement even on pre-withdrawl Josh.


I've received a heap of e-mails over the weekend asking a few questions and looking to compare themselves to me, so here's the answer to a few of the most common q's.
I used cortisone for 10 years, although the first 5 -6 I used bugger all, just on spots that came up from time to time.  After that I used quite a lot, until recently where I would regularly use 2 - 3 tubes in one sitting.  The tubes were 0.1% strength, and the tablets became more frequent as well.
Early on in the recovery my legs swelled up like tree trunks and for a month I couldn't get into my shoes.  Solving this was my Dad, who kindly started massaging my legs daily, pushing the fluid out of them.  After about a week of this we saw big improvements and over the next month it completely went away.
Sleep was another big issue, even when my skin was healed I was waking up every hour.  So to solve this I went out partying, forcing myself to stay away until I was completely shagged (tired) and doing this regularly trained me to sleep through the night instead of the day.
Diet-wise, I eat really healthy, lots of fruit, vege, fish and lean meat.  I largely cut out gluten, carbs & sugar, and for the first 5 months booze and caffeine.  Nowadays I drink about 3 - 4 beers when I go out, and two coffee's per day.  Other than that, I don't drink softdrink anymore, focusing on keeping my fluids up, and suplimenting my body with prime rose oil, cod liver oil and zinc tablets.
If you do nothing else, I recommend cod liver tablets.  The research on these is very positive and my recovery certain sped up after taking them (3 tablets daily).
Any questions, just let me know.

Don't use cortisone cream - Recovery month 5.5

Five and a half months into the recovery and things are going from good to better every day. I haven't had any flare ups, or bad days, just a steady improvement. There are a few patches that go through stages of redness and itchiness, this lasts about 1 month but doesn't affect me physically at all.



In the last 2 months I have been partying, drinking, and generally having a great time and the body has been lapping it up. I'm really happy with the progress U;m making and it looks like the recovery only has another 6 or so months before I'm back to normal.

Pleasingly it has been a very long time since anyone asked if I was sunburnt, or mentioned how red I was. I use to get rejected from bars a lot after security thought I was drunk from my redness, now that never happens.

Another really interesting thing I noticed was my balls (sorry if that makes anyone uncomfortable). For the last 4 or 5 years they have been bright red, itchy and occasionally had small white zit like pustules on them (sounds worse than it was). I never put cortisone on them, but they still reacted this way. Since quitting cortisone my nuts were the first thing to heal, now a dark brown skin colour, no marks, not itchy and 100% back to normal.

So on that bombshell (sorry), I'm signing off. Thanks for the support, particularly to you John Boy for your regular e-mailing.

See you all soon.

Recovery Tip - Massage

The general consensus amongst the topical cortisone steroid recoverers is that the body needs lots of rest and relaxation in order to heal quickly.  One thing I have notices now that the skin is not flaking like crazy is the role of massage in helping the colour and texture of my skin repair itself.  Over the last month I have been going for massage several times per week, and following each session my skin is whiter and smoother than before.

Today I started the day quite red, as you can see in the image below.  This has been brought on by long hours in the office and broken sleep due to the heat of summer.  After  the mid afternoon massage (1 hour session) the look and feel of the skin improved.

Where this really fits in, is my belief that you need to stay active and interact with life.  I know it's tempting to hide away until it's all over, but in my experience recovery has been quickest, and most bearable when I'm busy living life and having fun.  So lets examine this:

1. All medical evidence shows that an active brain is a happy brain, this is because we release endorphins (which my friend Amy calls 'inner dolphins'), which make us happy, help the internal system work and speeds up recovery.

2. Time passes quick when you are having fun

3. The most important recovery isn't physical at all, it's internal.  Talking about motivational theory Maslow has a theory that the highest plain of existance is when you reach self actualisation, or in laymen terms, when you are confident in yourself and unphased by others.  Let me tell you now, if you're not focusing on your own state of mind, start now.  Read a book, talk to me, just start working out how to be more happy with yourself and everything else will feel easy.  It's my #1 pro tip for life.

Ok, enough pontificating from me, any more and I'll be running for Pontiff... which I'm not sure my two years of high school Latin qualifies me for, and failing that, my lack of religious believe certainly disqualifies me.

Keep the messages coming!

Celebrating 5 months of cortisone steroid recovery

Welcome all, thanks for the ongoing support. Today marks a milestone of 5 months recovering from cortisone steroids that ravaged by body, destroyed my adrenal system and sent my skin bright red and dry.

Since stopping use of cortisone steroids, my body has been the victim of a horrendous recovery; bright red skin, very very very dry cracked skin, hair loss, swelling, insomnia and much much more.  Pleasingly, after 5 months of recovery things are improving, and I'm back living a fairly normal life.  I still can't exercise or work out, need to manage the amount of heat my body is taking in and have quite a strict diet and relaxation program, but I'm on my feet, having drinks with mates and back into my beloved party scene.

In recent times I've travelled interstate on planes, drunk booze with friends and worked late nights with minimal sleep and the body has held up very well, in some circunmstances better than it use to.  My internal system is working the best it has in years and areas on my body that use to suffer from cirrhosis have cleared up and gone away.

Still I live with redness and areas of dryness, hair is still months away from coming back properly and I need to mange myself, but on the whole it's a very positive story.  How much longer?  Well I don't know, it could be months, it could be years.  If I had to guess I would say another 6 months before I'm back to normal, but to be honest that is nothing more that an optimistic guess, something I'm working towards and very prepared to be wrong about.

I'm throwing a party to celebrate my 6 month recovery next month, should be a belter of a night!

Josh

Cortisone recovery video - Nearly month 5

The recovery process is going great guns, the redness of my skin looks worse in the video so you can imagine how happy I am to be feeling good and looking somewhat normal.  It's quite hard watching myself on video, particularly after the hairloss is making me look like my grandfather!!
Nonetheless, the red skin recovery diary rolls on, every day better than the last.  Thank god for finding ITSAN.org, the information I needed and the people to support me through.  I can't thank Jake & Liz enough for their tireless support and motivation.
Hope you are all gearing up for a brilliant weekend.
Josh

Side affects of cortisone

A quick update, almost 5 months into my recovery from cortisone steroid use, prescribed by not just one skin specialist, but hosts of specialists and GPs.  The side affects of cortisone use are horrendous, the knowledge of how and when to prescribe them poor, and the cases of people going through the horrors that I've seen enormous.

It's incredible how many people have found this blog, suffering from the side affects of cortisone steroid usage for what they were told was eczema, but was actually being brought on by the very drugs they were given.

The knowledge in the marketplace is very limited, if you know anyone going through the side affects of cortisone steroid usage, or think they may be similar to me, please show them this blog or ask them to e-mail me.  If I had been using them for a few more years, I shudder to think what would have happened!

Cortisone Effects Recovery Day - #139

A quick update showing the general redness of my skin.  Whilst it varies from hour to hour, this picture shows a pretty common level of red.  As you can see, my eyebrows are starting to grow, as is the hair on my head, and every day I'm looking a bit better.

I'm thinking now might be a good time to chat to a couple makeup artists I know and see if they can provide me some green based moisturisers and alike.  My skin itself is really not sensitive at all, still dry, but only light flaking and not very itchy.  It's more about the colour of the skin which is still going to take many month to return to white.

It's funny how little people are noticing my colour nowadays.  Before I went off cortisone, and even after the cortisone effects of withdrawal I was always getting asked if I was sunburned, but now it's happening a lot less.  It's really pleasing to see the improvement day to day.

More updates on their way soon, hope you're all enjoying them, I appreciate the support.

A reply to a fellow sufferer

Hi all,

My recovery is going really well, and I'm thankful i've been able to help so many others.  I wanted to add an e-mail reply I sent today, as I've sent a similar e-mail many many times already.  In here is general advice that I found useful.  I will stress, I'm not a doctor, I give this advice with a grain of salt, it is pure opinion and personal experience.

For the record, the original e-mail from Wayne is listed below.

@Wayne, I didn't ask you if I could post this, my apologies.  I have removed all contact details and personal references to your identity, but if you wish me to remove it, please all you need do is ask.

---------------------------------Start E-mail---------------------------------

Hey Wayne,

You are most welcome to e-mail, the community of sufferers are a tight knit group, the only thing I ask in return for my time/advice is to stay postiive through the process and actively communicate with the other ITSAN members (pass it along etc.)

I do believe there are people that have used cortisone as long, if not longer than you and have healed, although I must admit I haven't really sort anyone out.  The only person I've relied on is Jake & Liz, if you haven't read their story it's perfect for you as Jake suffered really bad eczema for a long while- http://eczemahealing.blogspot.com.au

Swelling in the glands and lymph-nodes is really common, the ones in my groin are enormous.  I had a massage recently and the guy said he had never felt such swollen nodes.  Everyone in the community I speak to has had the same problem.  Eventually as the illness resides, so does the swelling, but it takes forever.  I did have lymphatic drainage massage done, which moved the infection around the body... it helped, but the next day something would be really swollen before getting better, so I didn't do it a lot.

When you do cut the steroids for good, be prepared for the worst.  You are going to experience some pretty horrific symptoms, leaking skin, hair falling out, constant itch and inability to sleep + much much more.  The first few months are completely f*cked, you need someone to care for you.  You will just want to lay on the couch or in bed and not move.  Get lots and lots of TV series and moves read for you, as you will barely sleep.

Also, I highly recommend getting a GP to supply you with good pain killers, anti-hisamin and strong sleeping tablets.  The suppliments I recommend are cod-liver oil tablets, primerose oil tablets, vitamin c with bioflavanoids. Find a moisturiser that works for you and stays on your skin for long periods of time.  Your skin will absolutely drink the stuff, and there is nothing you can do to speed up the recovery, except keep moisturizing, try not to scratch and be very very patient.

Going through the recovery is easily the hardest and most emotionally draining things I have ever done.  I'm still going, but literally every day gets better (after the first few months).  Today I am so insanely happy that I look better than last week, I can wear a shirt again and nobody is asking if I have cancer, or am badly sunburnt.

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 fucked, spread the word, tell your friends & coworkers, let the world know how badly we got screwed by modern medicine!!

Josh Strawczynski
Melbourne, Australia


Original e-mail listed below

Wayne

21 January 2013 11:09 AM

Hello Josh

My name is Wayne and I live in the UK and I am currently suffering from extreme eczema and a redness all over my body which I suspect is due to years of topical steroid use. My skin looks very much like a severe sunburn!  I have been using steroid creams all my life (35 years) and am now suffering more than ever.
I have been on all creams, oral steroids, immuno-suppressants in my time, but nothing seems to clear me up anymore. 

I was interested to read about your progress and how you are still managing to work whilst stopping your creams, amazing!  I am currently planning on stopping my steroid creams as I am pretty sure they are the cause of the eczema now, not the cure.  I don't wish to take up too much of your time as I appreciate that you are a busy person, but I have a few questions that I need answering if you would be kind enough to do so.

I have been looking through other people's stories of withdrawal and can't find anyone who has used steroids for as long as me. Have you heard of anyone, and have they healed?

Also, in the past when I have run out of creams and not used any for a few days, I have scratched and opened my skin resulting in my glands in armpits or groin swelling. Did/do your glands swell when on withdrawal as my doctors prescribed me antibiotics thinking that I had an infection?

Thank you for your time Josh I hope you have a speedy recovery and will continue to follow you in your blog and on YouTube.

Yours
Wayne

Vast improvement in skin colour

The last four months have been going from strength to strength, my skin strength and colour have been improving every day, hair is growing back (including eyebrows) and my friends have been telling me I look good.

Today was a particularly good colour day and I wanted to show this video to highlight the beautiful skin colour in my face.  Now this isn't always the colour, infact in a meeting today I went quite red when I stopped breathing long and deep, but even that wasn't all that bad.

The past week may have been busy and the booze and food at the wedding on Saturday should have knocked me around, but instead i find myself better than ever.  I don't know what that means and the only thing I can say is that I have been doing the things I love (in moderation) and smiling and laughing a heck of a lot, so perhaps positivity is the key.

Anyway, thanks for the support, it's still a very long road, but I wanted to document the good times.  It has been a month since my last flare, lets hope the streak continues.

Lump on my back - Update

A quick update to let everyone know the lump on my back seen in the last video is a growth that is being cut out next week, but pleasingly it is benign and hence there are no other problems likely to arise.

1 Hour after the last post

I just got home and wanted to explain why my skin looks so much less red on this video.  Keep in mind that the redness is caused by blood getting close to the surface of the skin.  When stress, exercise or heat cause more blood to pump, I get redder quickly.  This is healing as the internal system builds up the capillaries again, but it takes a really long time.

For now I am thrilled the horrible symptoms of months 1 - 2 have gone away and thankful that I look and feel pretty normal again.

Month #4 - Cortisone side affects clearing up

4 months in and the improve is coming thick and fast.  When I first stopped using cortisone cream I became very dry and sore, I couldn't move and certainly couldn't leave the house or exercise without great discomfort, now the moisture is coming back into my skin, I can go out, drink and hang out with people... feeling really great.
This video is a bit frustrating because I am not actually that red, but i guess you have to take it any which way it comes.  Believe me when I say I'm looking much better :)