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Thursday 28 March 2013

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



Wednesday 27 March 2013

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.


Thursday 21 March 2013

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.

Sunday 17 March 2013

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!



Monday 11 March 2013

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.


Wednesday 6 March 2013

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).