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 :)