0 Month TSW - August 2020

Started TSW on 2 Aug 2020...

Symptoms:

=> Noticeable flaking from head to toes. 

=> Oozing on some parts of body.

=> Edema started on week 3 on hands and legs.

=> Shivering and jerking all day long.

=> Body radiate hot flush.

=> Sleep talking.

 

 Treatments:

=> NMT 

=> High Pulse Blue Laser

=> Clean with Saline Water on oozing area.

=> Bath once a week.

She was bed-bounded, needed assistance on feeding and bathing due to restricted movements.

Medical Certificate: 19 Aug 2020 - 1 Sep 2020

 

 

 

 

 

 

 

[Overview of TSW] - Withdrawal Symptoms

This is a very informative video on the Overview of TSW which was created by Dr Heba Khaled, a dentist with degree in Biomedical Science, who is also a TSW Warrior.

 

Please click here to watch it in Korean language.

 

On our first visit to Skin Health Centre, Dr Jay checked what steroids (스테로이드) we were using. I showed him some of the steroid creams and was proud to tell him that she's actually using Protopic for her face which was not Steroid. Then also had Dupilumab (듀피젠트) injections for 5 months. 

 

He told us that even though Protopic (프로토픽) is not a steroid, the side effect is worse and will cause her to suffer more withdrawal symptoms than steroids! The whole world was just collapsing in front of my face! Everything is so wrong! We thought that they are much better and safer than using steroid... It's as if we paid so much money to get her to suffer from all the withdrawal symptoms instead of benefiting her.

 

It was really discouraging when Dr Jay listed down all the withdrawal symptoms that my daughter will be going through from steroids, Protopic & Dupilumab. 

 

We contributed photos in the above video as her whole body from head to toes (except her nose only) were affected in extreme conditions as following:

 

* Atrophy / Elephant Wrinkles / 코끼리피부동반 (9:05)

 

* Exaggerating Flaking Skin / 건조 탈각현상 (9:34)

 

 

 

At first we're uneasy because of her flaking skin as everyday the whole bed, sofa and floor covered with her skin. Dr Jay told us that we should worry if there's no flaking! Flaking is a good sign as her body still can generate new skin.

 

* Hyperpigmentation / 색소침착 (12:58)

 

* Oozing exudation / 진물 동반한 발진

 

 

We really thankful to find information on NMT (No Moisturizing Treatment). It really helped to minimize the oozing on her whole body.

 

* Edema / 부종

 

* Urticaria (Hives) / 두드러기

 

* Cradle Cap / 크래들 캡

 

It's not stop on the skin only, but TSW (탈스테로이드 증후군) also go deep down inside the nerve...

 

* Shivering & Jerking

After all the above, I do agreed with Dr Heba's conclusion. I won't visit Doctors or Dermatologist for her TSW. It's much better to get information from the support group as they're the real people suffering from TSW and finally recovered...  

 

Well, I know you all care, but sorry that really doesn't work as it's not eczema (as stated on the above). Please also don't ask me to try this or that, eat this or that as if I didn't do my best to take care my daughter. 

 

We tried to control her diet but please understand that it's impossible to give 100% vegetarian. We don't  appreciate artificial meats that have gluten or additives in them. She requires a lot of protein and collagen to regenerate as her skin is flaking 24 hours per day.

Please also don't ask to apply moisturizer as you think her skin is extremely dry. We actually purposely to make it dry because all these while we thought that moisturizer will help, but actually it make the skin harden and thicken skin which is more difficult to treat.

 

Your prayers are more appreciated as they help more than everything else. Thank you.

Indescribable TSW

My daughter will personally write the journey as she went through this mentally and emotionally. I will not be able to describe her overwhelming struggle, pain, itchiness, better than she is able to.  

 

Therefore, I will only post photos of her progress and maybe information that might be useful for others We just hope that others will not suffer from the side effects of steroids, protopics and other immunosuppressants. 

 

Dermatologists that we've visited misdiagnosed it as severe eczema and infection due to her shivering. They suggested admitting her to the hospital as she might have sepsis which is life-threatening. One of them even said that he had never seen someone in worse condition than my daughter. Too bad we didn't know earlier that shivering is common in TSW as the body unable to thermoregulate body temperature.

 

After 3 days of heavily applied with steroid, she was prescribed 

with more steroid when discharged from hospital on 1 Aug 2019.

After her discharge, her condition quickly worsened as we tried not to use steroid as prescribed and started her on Dupilumab injection from 19 Aug 2019 to Dec 2019 as it's not effective on her and had side effects on eyes and caused hair loss.

 

Coincidentally, my daughter went cold turkey for steroid and moisturizer 

a year after her hospitalization on 2 Aug 2020.

 

 

10 Oct 2020 - after being bed-bounded for 2 months, 

she stepped out of the house for the first time to visit Whitesands. 

She still felt pain when the wind blew and easily tired even from a short walk. 

 

  19 Dec 2020 - latest photos after taking a quick bath every week.

We try to follow NMT (No Moisturizing Treatment) by Dr. Sato although not that strict on water intake of 1L per day which helps to reduce oozing and dry up the skin (which is very effective). Please check Tokuko's blog for more information on NMT procedures as she translated it from Japanese to English.

We'd stopped High Pulse Blue Laser too as it's very expensive (more than my monthly salary). We couldn't judge how much it helped. However, we're thankful as Dr. Jay was very experienced, he's very sincere and caring his patients and explained to us in detail everything that we need to know about TSW.  

 

When I asked her what she wanted for Christmas around 2 weeks ago, she said that obviously her baby skin. But, she knows that won't happen in such a short period. Therefore, she's tearing while saying hopefully she'll have 75% clear skin on her coming birthday in Feb 2021 so she can go to school. Praying hard that her wish will come true~!

Stop Steroid Start TSW

Let me copy the previous post from meheartseoul to this new blog which will be mainly journey of my daughter's TSW...

You must be asking what is TSW?!! 

HELL!!! Yes, it's the hellish Topical Steroid Withdrawal. I found out about TSW after reading this article "26-year-old S’porean woman living with rare skin condition: I thought it was ‘severe eczema’"

All the symptoms matched exactly with my daughter's condition. I asked my daughter to read it, and we decided not to apply steroid from 2 Aug 2020. Actually, we tried not to use much steroid and kept asking doctors to not give steroids as what I knew it'll make the skin thinner, but didn't know that it'll lead to Red Skin Syndrome (RSS) and all the complications.

   

 These are all the medicines that she applied on different parts of her body.

My daughter said that she's thanking herself for being lazy to apply the medicines and moisturizer, which indirectly saved her skin! 

From the above photos, you can see Protopic which is not steroid. Please don't use it too as the side effect is even worse than steroid. We didn't know and thought that it's a good alternative.

She was admitted to hospital on 28 Jul last year. Dermatologist suggested to admit as the eczema flared up to her whole body and afraid that she might have sepsis due to infections. Although she didn't want to be admitted, but we forced her as her conditions were getting worsen. Amazing to see her back to the normal person and her skin perfectly cured in just 3 days! She even took the longest bath of 45 minutes and had to stop after found out that it's flooding outside her ward!!!

Nurse buttered her with steroid and thick moisturizer which made her whole body shinning!

To be frank, we were really relieved to see that she could sing instead of scream in the bathroom! 

So is steroids were amazing? after just 1 month we noticed that her eczema was starting to flare again and we started administering Dupilumab on 19 Aug 2019 and stopped in Dec 2019 because her condition was only controlled for one week after injection and there was noticeable hair loss and reddening of eyes.

By the way, now she goes for High-Pulse Blue Laser treatment weekly at Skin Health Centre. According to the doctor, the withdrawal usually will take 4-8 weeks, followed by a long recovering period. My daughter asked us not to worry about her as her skin will get back to normal soon. She is thankful for all the people praying and wishing for her speedy recovery.

As quoted from Dr Jay, "Stay positive!!!" this is very important because stress is one of the factors that cause skin to worsen.

 TSW Syndrome (Source: ITSAN)

 

I will post more about TSW when my daughter is getting better, as I really have no time as we need to take care of her 24/7 on top of our jobs.

* Feeding her meals, fruits and snacks as she eat double or triple!!! 

From Jing Rui's website we learned about No Moisture Treatment (NMT) to reduce water intake so there won't be too much oozing.

* Toileting 2 - 4x / day and showering 1x / week. 

It's too painful as water stings her so I had to bath her only with water without any shower gel or antiseptic bath gel which was suggested by dermatologists. Another reason is because she fainted twice when I was bathing her, likely due to the pain or sudden weakness.

* Scratching machine

In order not to let her scratch herself too hard, we became machines to gently scratch her as per her instructions.

* Endless cleaning, sweeping / vacuuming at bedroom, living room & bathroom.

We need to wash 2 sets of bedsheets and blankets everyday because she loses large amounts of flaking skin and oozes a smelly substance. I have to wake her up at 7 am and then rest her on the sofa until 7 pm so that I can do my work and take care of her at the same time. My mum helps me with most of these chores. I'm thankful because I can work from home so I could cope with all these issues. 

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 Red Skin Syndrome

Flaking from head to toes.

She asked to shave her hair so it'll be easier to manage and not stick to her neck, ear and skin.

Edema which might last for 3 months.

Fighting for smooth recovery all the warriors!