19 November 2015

TSW Month 4

Recently, a member in the Ezcema group mentioned about moisturiser withdrawal (MW). And so I read up more on it. It seems that there are alot of people who did MW with TSW.

They explained it so well, so I am just going to link them here.


I used to moisturise like every 2 hourly in the day. Yesterday I tried to only moisturize once lightly with coconut oil. And true indeed, my skin feels very very dry and tight, almost felt being torn apart. I was in pain especially in my arms, hands, calves and feet.

So whatever the doctors said I didn't follow in the end...
Dr Chiam said 1. Don't scratch 2. Moisturise the moment you feel itchy 3. Take immunosuppressant.

I scratched very lightly to soothe the itch somewhat and at the same time not break the skin, I reduced moisturising to a very large extend and will try it for 1 month and see the progress and I have stopped all steriods and immunosuppressant since August 2015.

I may also reduce juicing to once a day. Currently, this is my timetable for month 4.

8.30 am - dead sea salt soak
9 am - cut fruits or a slice of bread and supplements (milk thistle, magnesium chlorate, probiotics)
11 am - lunch and tcm medicine
3 pm - cut fruits
6 pm - dinner and vegetable juice with chlorella powder, fish oil)
8 pm - Atarax (antihistamine pills)
9 pm - dead sea salt soak
9.30 pm - tcm medicine

Plenty of apple cider vinegar water and alkaline water throughout the day.

Benefits of magnesium
Benefits of chlorella
Benefits of milk thistle
Benefits of fish oil

Today, I am 2.5 weeks into my MW days. I am very very happy with my progress. I even dared to eat prawn the other day!

Will post pics later.

20 October 2015

TSW Month 3

I had a roller coaster ride in my third month.

I stayed at my friend's house with my #1 at Pasir Ris for close to 3 weeks, my #2 at my mom's place, then I moved to my mom's place cos I miss my baby so much, then finally back to my own place at Toa Payoh with both kids. But I had a flare and now my #2 is with my mom again.

My friend made me a special blend to soak myself in the tub. Ginger, tumeric, chilli padi, celery, garlic and onion blend together, add coconut oil and her homemade oil and put them in a warm water tub. I soak in this daily for 30 to 45 minutes.

I am not exactly sure if it helps but it does help to soothe the itch somewhat. So I just religiously soaked in it.
I also learnt that I am unable to take tomatoes. She made tomato sauce with organic ingredients but I still wasn't able to take it. Then one day, when I was looking good, we went out to Sakae Sushi for dinner. I flared up terribly that night. I took unagi set without sauce and two slices of sashimi. It was hellish. I could only sleep 30 mins the entire night even with 3 atarax pills.

Anyway, this is how I looked like after I reached my mom's place. However that evening, she cooked soup and very plain vegetable dishes but I still flared up. I traced back and realised that I could not take the red dates and huai san in the soup.

List of forbidden foods (thus far):
  1. Mushroom
  2. Corn
  3. Tomato
  4. Wolfberry
  5. Red Dates
  6. Sashimi
  7. Unagi
Mushroom was the worst. I felt like killing myself to end my misery then.

Then, on 17 October, my teacher was ill and I had to run the lesson for two classes. Too much movement and too much walking and standing. I waited for 30 mins for a taxi. And it was not good.

I was in bad shape. Oozing non stop for more than 10 hours and I was in pain. I realised that I wasn't able to stand up and I had to be carried to the toilet. My mom nagged at me to see a doctor. And I went downstairs to see a GP and asked for Foban (antibiotic cream) and Augmentin (antibiotic pill) and nothing else.

Took 3 atarax and thankfully, I could still sleep 2 to 3 hours at night.

My oozing continued from 17 October till 28 October, non stop, round 24 hours. The dead sea salt that I was soaking twice to 3 times a day did helped to cease the ooze much. It made me feel relaxed after every soak. I previously used Epsom Salt and Himalayan Salt but I felt a difference with this dead sea salt. This is me soaking in a toyogo box. I usually soak 30 minutes each time.

21 September 2015

TSW Month 2

Yesterday, my helper put some potatoes into the soup. I didn't eat the potatoes but I still itch horribly. Even with such a strict diet, I am already itching. The potatoes just make me much worse. I scratched uncontrollably even with my hands and legs bandaged up at night.

The healing of 3 good days are discounted and I am backwards by 3 days again. I powdered my hands up with talc to stop the oozing.

I hope I have reached the peak of the worst of tsw. I feel terrible that even my scalp is oozing. The itch is so terrible and horrible that even holding onto ice cubes doesn't help a single bit.

I took 3 Atarax but I still couldn't sleep from 10 pm to 7 am. I was literally scratching away and I swear.... nothing helps.

My diet is very very strict and I have lost alot of weight. My weight before tsw was 54 kg. I am now 47 kg. Lost 7 kg within 1.5 months.

10 September 2015

My TSW journey - Month One

I was inspired to blog about my tsw journey, after reading http://iloveaaa.blogspot.sg/ . And also to revive this blog.

My background:

I had ezcema behind my knees for a few years since I was a young child. I have got steroid jabs and creams before, numerous times.

The first recent flare was in Nov/Dec 2014 when I was going through a difficult time at home. Due to stress, my skin condition worsen. I saw Dr Leong from Rophi Clinic  in Feb 2015.

I was hospitalised for 4 days, had an antibiotic IV, steriod creams (what else?!) and anti fungal powdered on my swollen feet. I was well for a month plus and I had it worse. Then I saw Dr Kelvin Goh at Takashimaya and the famous Dr John Chiam at Ghim Moh. I spent more than $1K at John Chiam!

When I questioned Dr John and told him that, "you are not treating me, you are only suppressing the ezcema." He went into a defence mode and he even scolded me. "Don't believe everything you read from the internet. If it's so easy, then we don't need to study 6 years to get a doctorate".

All these doctors are recommended by my friends, so I really trusted the doctors and obediently accepted the jabs and creams. Though I time and again say I don't want steroids. But what else can they give other than
immunosuppressants (Deximmune) and steroids right?

Headache, they give paracetamol.
Stomach flu, they give antacids.
Ezcema, they give steroid creams.

It's their protocol. They really have nothing else to offer, sad to say.

So I told  myself. Enough is enough. I have to take control of this.

Recently (thanks to Health Champions Ezcema Facebook Group), I was introduced to http://itsan.org/, International Topical Steroid Addiction Network. It is a non-profit organization helping those with eczema. Based on the research of two doctors, Dr Marvin J. Rapaport and Dr. Mototsugu Fukaya, it shows that over use of topical steroids can make eczema worse. Long term (in fact just weeks) of TS use will lead to 'Topical Steroid Addiction', 'Steroid Induced Eczema', 'Topical Steroid Dependence or Rebound' or 'Red Skin Syndrome'.To be honest, I used the tapered approach. I dragged the steroid pills for 2 weeks slowly and then when I am emotionally and mentally ready, I went 100% without it. During that 2 weeks, my rashes slowly came back.

My typical meals is as follows:

Breakfast - apple/pear with oats
Lunch  - Brown rice with vegetables (xiao bai cai, broccoli, carrot, cabbage)
Snack - Apple + Bittergourd juice
Dinner - porridge with vegetables and minimal fish/mince pork

Throughout the day, I drink water with apple cider vinegar or Rooibos tea.

I also soak my feet (and hands) into a pail of Epsom salt with Lavendar or Baking Soda with Lavendar everyday.

The peak of the itch is usually about 10 pm to 6 am. There are many many times I can barely sleep at all due to the burning skin and itch and oozing. If i can have 3 hours sleep for a stretch is considered blissful.

Currently, I am on tcm medicine and seeing a naturopath doctor taylor bean.

Dr Bean gave me some chick weed cream, probiotics, fish oil, digestive homeopathic drops on the first visit. It costs me $500+ to see her.

Symptoms of Red Skin Syndrome ( I have them all)

Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. My skin literally BURNS.24/7

Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. There were several times, I was scratching until I see blood and I continued scratching uncontrollably.
Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off. I am literally a snake, shedding skin wherever I am.
Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.

Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.
Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch. My body is in constant pain. This raw and painful skin runs throughout the body. And I am soo soo scared to shower everytime.

Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.Insomnia or difficulty maintaining a normal sleep schedule.
One reason to explain the tiredness is insomnia. It is just so difficult to sleep due to the itch.

This is the monster me now. Almost a month into my tsw (total steroid withdrawal) journey. This is how my skin CRAVES for steroids.

I do not dare to step out of my house at all as i don't look very human.

Usually, when breastfeeding moms faced issues with latching/mastitis/thrush, there is a support group which is very active.

However, I feel mostly lonely in my tsw journey as the support group is not really as active and friendly. Or half the time, people in MLM will come and sell you things. Itsan forum is

a private forum and all content shown on the site is controlled by the owners of the site. Thus the sharing is limited and restricted.

Anyway, I want to say that after this happened to me, I am not going to trust any medical doctor or dermatologist anymore. T
he only way to recover from topical steroid addiction is to stop using the steroids. It IS the steroids that causes the condition, therefore, it IS the steroids that must be stopped.

I will share my (hellish) journey on my tsw on a monthly basis and if you are a fellow warrior and would like to connect, feel free to drop an email or message me on Facebook. I am Rachel Sihuei.

Take care.