Feel free to leave comments whenever you wish – I’d be more than happy to reply! Thanks for stopping by and I’ll do my best to keep this thing up to date. Hope my sharing this experience has helped in some way! Keep fighting
I posted this in my wall a few weeks ago when an article was printed in an Australian newspaper re TSW. It was great to share my journey with everyone and educate people at the same time. Was good to get it all out there and not have to make excuses about cancelling events and everything. A few people contacted me thanking me for posting as they were also suffering from persistent eczema with no real trigger that they could find. I put them on to itsan.org and Dr Fukaya’s blog to get them to read up. I highly recommend it!
If you know me well, you’ll know that I’ve been out of action the last few months. I’ve been dealing with eczema for years, managing symptoms with steroid creams (cortisone etc) and over the years found myself getting sicker and sicker all the time, with eczema but also other illnesses due to a rundown immune system. After researching and finding itsan.org I decided to stop the creams and go cold turkey as only way to let me body heal itself from topical steroid addiction or red skin syndrome This article will explain a lot to you as I’m currently going through the exact same withdrawal now. It’s hell on earth but there’s a light at the end of the tunnel. I’m almost four months in and while not as severe as the guy in the article, there’s still a long journey to recovery and I gave a lot of healing to go. It’s impacted in every part of my life including the lives of those close to me as the symptoms of withdrawal are so severe. I literally couldn’t go through it on my own without Yuki and my family’s support. If you, your child or anyone you know has eczema or a skin condition that you have been advised to treat with topical steroids (creams), please read this and go to itsan.org.There are so many people affected by this, from babies to adults. I’ve been to GPs and specialists and none so far even acknowledge this is a real condition. It’s exhausting to go through this without medical support and heartbreaking that so many people are being shunned, questioned and patronised by the medical community forcing people including parents with sick little kids to go it alone. The emotional toll for those parents must be unbelievable. I’ve been the crazy guy in the doctor’s office on many occasions trying to explain myself but get nowhere and just told to use steroid creams. I even took my dad with me as support to show I wasn’t a madman getting info from an online quack. Whenever you mention the internet to a doctor I’ve found you get fobbed off and not taken seriously. Finally, the media is catching on and the condition is now recognised by the US National Eczema Association.
Steroid creams are powerful drugs and you often don’t get advised about the best way to use them or how bad the side effects are over long term use (which could be only a few weeks got some). Even the over-the-counter steroid creams are so widely used that it’s scary. Educate youself and don’t use them blindly. All drugs have adverse effects so ask plenty of questions and get second opinions. Without this sounding too conspiracy theoryish – remember drug companies are just that, companies. With shareholders and board meetings with graphs the show last quarters’ sales. Please just try to find out by asking questions and educating yourselves. The withdrawal is horrible and if this resonates with just one person I’ll consider this post a success. There’s an amazing international support community that helps each other and a handful of doctors around the world but none I’ve found in Australia. Contact me if you have any questions, I’m always available! I’ve been documenting this journey in pics and even in the last four months the changes both negative and positive have been amazing. Thanks for reading through to the end – love you guys!
Well, what a journey this is turning out to be…
Last time I wrote I had just been to the dermatologist and was having doubts about what to do and where things were going. Sitting here now, that seems like half a year ago not just over a month ago.
I stopped seeing the Ayurvedic doctor as I realised there wasn’t much the diet or the supplements were doing other than keeping me regular and I could find cheaper ways to make sure of that. I took the anti-fungals from the derm which helped the rash under my arm. I also tried borax under my arms to really hit the rash hard and in two days it was gone. That was pretty amazing and I recommend giving it a go if you’re looking to get rid of a fungal rash like athlete’s foot or something of that nature. Would use less under my arms next time though as it’s a sensitive area and peeled quite a lot of the next few days.
Anyway, about halfway through month three I went to Perth to visit my brother and his family and celebrate my nephew’s 2nd birthday. It had been planned for months and I was feeling like I could handle it even though I knew the full TSW hell was yet to come. It was a 4-hour flight to Perth on the cheapest airline, packed in tight and I started feeling a little down. My neck had been oozing and as soon as I got on the plane, I dried out completely with my neck oozing away.
Over the next few days I shed like nothing else but did my best to have a normal holiday, drank some beers and wine, got a lot of sun and fresh air, and ate whatever I wanted. I was also trying to get as much sun as possible but I don’t think I was ready for it as I was just still in the flare and burn stage. I was trying to feel good and put on a brave face but getting anxious about not having ACV and my routine was way out of wack. Looking back, I was just about to hit the worst period so far. At the end of the four days I started getting intense chills, fever like shakes basically that nobody else was feeling (these chills lasted over a month by the way). I was getting pretty sick but just trying to cope by taking hot baths. My insomnia was also insane which was adding to the stress. They had a cat living indoors too – I’ve been in denial about having cat allergies forever but this confirmed it. I was getting pretty sick.
I came back to Melbourne and had crazy headaches on the plane and while I was due to go back to work the next day after getting in at about 10pm, I realised I wasn’t well. I was burning up but freezing cold, and started getting a rash on my neck and face. I woke up the next day to a horrific sight – swollen, insane flaking and a terrible infection. My neck was split in several places and I was freaking out. I called a few hospitals but in the end decided to go to the local doctor to get it checked.
The doc listened but in the end said it was a bacterial infection and gave me antibiotics and encouraged me to use steroid cream and tablets to get the inflammation down. He obviously didn’t listen too well as I told him about my TSW journey. I took the antibiotics and the next day decided to go back to see him this time with my dad as support to see if he could do a skin biopsy to make sure that it wasn’t viral (eczema herpeticum for example) as I’d seen quite a few cases of this in people with TSW. He actually got really short with me and didn’t do the biopsy as he was confident it was bacterial. He did refer me to get my blood checked and adrenal function checked and gave me some heavy sleeping aides though.
That afternoon I went for a second opinion with another clinic and they were shocked by my condition, did a skin biopsy (which turned out to be a bacterial infection – first guy was right!) and long story short, while they didn’t really agree with TSW told me that they’d stick with me throughout the journey. That was the first support I had felt – even though they still thought I was crazy!
Got my blood work back and IgE was off the charts, allergies confirmed to rye grass, cat and dog hair and dustmites. Ow yeah.
Oh yeah, no bath in my apartment so I decided to buy a big bucket! Best $22.95 I’ve ever spent! For real – if you don’t have a bath get a bucket! It will change your life!
I ended up taking a week off work to get over the infection but it finally subsided. It took another month to get over the main symptoms and I’m still not completely over it two months later.
Month 3 symptoms: (it’s been a while so might not remember all)
– insomnia (sleep from about 12 to 2, then awake until about 6 – sleep again or get up)
– insane chills, never warm even rugged up in front of a heater – this lasted over a month, I was always tense
– bone deep itching started
– thirsty all the time
– shedding a lot
– oozing from neck, legs, arms
– starting to lose hair on head and arms
– no sex drive
– developing a fear of showers
– obsessed with TSW
Anyway, more about month four shortly!