My
name is ahfaye I am New Zealand born Chinese. My family originated from Hong
Kong and were early migrants to New Zealand. I have been using steroids for
over 20 years on and off including the most potent creams, oral steroids and
injections too to help with my eczema. In fact all these steroids didn't help
and it make my life miserable a lot of the time. I had eczema at the age around
5 and doctors then gave me a light hydrocortisone creams to start off with. The
doctors said I will grow out of eczema. Well, I never really did. I probably
would have if I stopped using steroids! I have asthma and it gets bad I use the
Ventolin inhaler. I have chronic sinusitis most of the time. My parents don't
have eczema, I have two younger sisters and they have it too, but theirs have
never been as bad as mine. Our grandparents had a bit of eczema but it was
controllable. I have cataract developed in my both my eyes due to prolonged
steroid usage :( I had cataract surgery
for both my eyes in January 2014 and have clear-ish vision now.
This will be my last Topical Steroid Withdrawal (TSW). Yes, I say
LAST EVER TSW because thinking back, I actually went through about 6 times of TSW in the past! This
is just from memory of the very bad eczema times. I might have had more mini-TSWs
in between :(
First time from memory was about the age of 12,
I had severe red burning, oozing body and that was the first time I saw a
dermatologist. I got prescribed topical, oral steroids (again) with
antibacterial creams and antibiotics. Things seemed to have been better after
the course of drugs and I went back to school after stopping school for 2-3
weeks. Yes I say again because my GP
gave me the same shit and I pay thrice the price to see another “professional”
to give me the same shit. FFS!
Then the second rebound happened after my university
graduation in 2005, I started working and due to work stress (I was doing a
night shift job), my eczema seemed to get worse again. I took lots of courses
of oral and injected steroids then to control the condition. Every time I got
off oral steroids (Prednisone) my face would swell very badly to the point
where I had to get shots of the adrenaline. Then I knew Prednisone was a very
bad drug to take, so I swore I’d never take it again. So the doctors just
prescribed me topical steroids and antibiotics from then on. I think I took way
too much antibiotics (Amoxicillin) back then as I’m now allergic (resistant)
to it. I get a angry red, extremely itchy, rash over my chest when I take Amoxicillin. I
only remember one doctor ever telling me that I couldn't put steroids on my
face and I nearly cried when she told me as no one has ever told me that it can’t be put on my
face. Doctors told me to use it wherever I had a rash and they knew I had rashes on my face. I felt like I damaged
skin so bad, no doctor has ever told me to not use steroids as it just seemed
like a necessity for my eczema, they never talked to me about the risks of side
effects, apart from "it may thin your skin".....................
Then after a few treatments of TCM herbal
creams (they did not contain steroids), TCM concoctions, and washing my skin in
TCM concoctions it kinda got better. Probably cos I cut out egg and chives in
my diet! Stupid me! (I am highly allergic to eggs). Then we got introduced to
this acupuncturist by a family friend. She tortured me with her needles. It
wasn't traditional acupuncture which doesn't "hurt". I actually
got yellow pus from her needles too, obviously she didn't sterilize them properly
ewww. Anyway, not long after seeing her twice my foot was completely bruised
from her 'massaging' my acupressure points. Initially it was supposed to be a
full body acupressure massage but because my skin was so wounded she had to use
acupressure points from my feet. Later mum and I went to HK to meet up with bf.
It seemed as though the acupressure massage on my feet might have cleared up
something in my body? Dunno. Well there in HK I saw another TCM herbalist Dr
Lee who a friend recommended. I went to see another herbalist as I was skeptical of the one in China. Dr Lee said the herbalist in China used bad quality herbs which prolonged my recovery. After 2 weeks of TCM plus needle
acupuncture I felt so good. (I think I was much better already when I left
Guangzhou too). Dr Lee used a new pack of needles each time he treated his
patients. See this is professionalism :P By the time I went back to NZ I lost lots of
weight (due to fluid retention from steroids - much of this weight was gone
near end of Guangzhou treatment). But I thought the weight loss was from all
that bloody walking in China! Stupid me! Man the lack of knowledge I had back
then with steroids.
In 2007 I started my Postgraduate Diploma and then Masters in Psychology. With the stress and wrong diet I was eating I quickly developed eczema again. I went to doctors, got put back on steroids again. This time injections as well as topical... Sigh. Still not knowing it was bloody TSW. Stupid me! Ups and downs through the year and after I finally finished my Master's degree at the end of 2008, I was so relieved but then my eczema started coming back again!
In 2007 I started my Postgraduate Diploma and then Masters in Psychology. With the stress and wrong diet I was eating I quickly developed eczema again. I went to doctors, got put back on steroids again. This time injections as well as topical... Sigh. Still not knowing it was bloody TSW. Stupid me! Ups and downs through the year and after I finally finished my Master's degree at the end of 2008, I was so relieved but then my eczema started coming back again!
Later in early 2009 our uncle in
Canada introduced us to this herbal pill for psoriasis (we all thought our
eczema was psoriasis back then) and my sister tried it and it kinda healed her! Well let's say she was a lottt better and almost normal. So then I stated taking it too (see: www.de-psoriasis.com). OMFG. This time my fourth TSW was so intense. My whole body was inflamed,
swollen, burning, weeping and itched like crazy. I had to take sleeping pills
and antihistamines which would only work for 4 hours. The doctors in Canada which I
could email didn't say it was steroid withdrawal symptoms really, they just
said toxins in body I needed to get rid of to fully heal. But the hell period
went on for months and months about 9 months which I was so over and was in
total depression, bed-ridden and just wanted to die every day. See PHOTOS
section in 2009 where I took some photos of my TSW.
I was also getting married at the end
2009!! Then fiancé goes to Shanghai to seek business opportunities, I was a lil
tiny bit better then as I took antibiotics I think (don't quite remember) so I
went with my fiancé to Shanghai with a munted face (I thought customs would not
actually let me leave the NZ border cos I looked so different to my passport
photo!) and OMG I loss hair like a madur-fucker! I had hair falling down
wherever I walked! Once I went to the hairdressers and he must have thought I
had cancer. My fiancé's sister’s in-laws saw my horrific condition and took me
to see the doctors in Shanghai and the doctors there gave me a non-steroid cream - protopic ointment. It was called Tacrolimus
Ointment (see: http://dermnetnz.org/treatments/tacrolimus.html).
It was very bad using it initially, it gave me severe burning sensations and I
was constantly slapping my face to relieve pain. Then the burning cooled down
and my skin actually got better!! I quickly stocked up on a few more ointments
before I left Shanghai and asked dad to import some over too (which was a
hassle with customs!). Then found out that they actually have Tacrolimus
ointment in NZ! But it was non-subsidised medicine and it was $175/tube in NZ!!!
OMG BUT I of course still bought it!!! I used lotssss of tubes. I finally
got better before my wedding. Just ok still reddish and hands still awful at my
wedding especially after being sun burnt taking wedding photos! But yay the
wedding was finally over and done with! I enjoyed my first few months after the
wedding much in honeymoon mode :) and I actually lost a few more pounds too so I
was back to school days weight woohhooo!
Then after a few months after our wedding my nightmare began again. Eczema
started getting worse again. I went to A&E a few times cos since I moved
away from my local GP area to live with my husband now and had to work in the
day so I went to A&E at night. But all they gave me was same shit: antibiotics,
antihistamines and steroids. I went thru a period of being bed-ridden again. My fifth TSW rebound. Guess it was steroids as well as protopic withdrawal
this time. It was hell again and having to work OMFG. Luckily my boss was the
most understanding person ever and a lot of the times I said I'll work from
home but really I was just sick in bed, oozing, shivering, and caught up on all
the work afterwards. I didn't think I'd had to go thru this shit bloody
again?!!! Each day crawling out of bed to get in the shower was so painful then
as the water hit my wounded weeping skin ouchhhh! But I don't quite remember it
somehow got better as time past. I think it was with topical steroids again and
protopic. Oh yeah and Dr Cao's TCM, another herbalist I saw which was quite promising
initially but later it didn't last long cos she said putting on topical
steroids was ok just no oral and injections. Ok, I listened to her. Slap on the
steroid ointments and creams again.... Then I stopped seeing her as I got
better cos it was becoming quite costly.
Later I got pregnant! Ok another TSW
period started in August 2010 cos I can't use any steroids to harm my baby!!
Man this was hard being pregnant and going through TSW (my sixh time). But it wasn't that bad as being bed-ridden days.
Maybe cos I had most of the toxins out when I saw the last TCM herbalist. But it
was still bad cos I couldn't use anything or take anything for my eczema.
Labour was OMG. My face was weeping I had to push for my life and the nurse had
to keep wiping off my sweat (she thought it was sweat but it was bloody ooze). Disgusting.
OK I don't even wanna talk about it anymore lol
After my first boy was born, I took
him in for a 3-month vaccine around September 2011. This Chinese lady at my GP
clinic saw my hands and face and said 'Oh I feel for you. My son has eczema
like you but he's better now seeing a TCM herbalist Dr Shen. So I went to see
this guy. It was a home clinic. My skin improved a lot. With just drinking TCM
which was amazing and have never had this feeling before with my skin getting
better with only TCM concoctions (I always used a combo of TCM concoctions,
herbal creams and needle acupuncture in the past). The thing is he said it was
ok too to put a thin layer of topical steroids on if I itched very badly so I
did..... You guessed it same shit happens.... you guys must be getting sick of
my story! How can someone be sooo duhhh LOL
Well I later went to see an
allergist. Which I did blood test allergies and found out that I was allergic
to dust mites (very bad 4/4), eggs (3/4), milk (2/4), all nuts (2/4), pollens,
grass mix and trees (3/4). So I thought ok good. I’ll avoid these foods so that
I won't trigger my eczema. But the environmental allergies: dust mites and
grass etc was a bit hard to control. I am controlling dust mite by doing
immunotherapy vaccines where they inject tiny dust mute allergens in me so that
my immune system gets used to it. Ok, sorted I thought. But the eczema on my
hands and face was still very bad. So the allergist gives me his ‘special
steroid mix cream’ (LPC 3% (liquor picis carbonis - coal tar), salicylic
acid 1%, menthol 1%, dermol 50% (clobetasol propionate 0.05%). I use
it daily on my hands, face where ever there is yucky eczema. Wallah! It works
very well! Of cos he says only on the eczema spot and put a fatty cream layer
on top after 30mins. Then after 30mins put a barrier cream on and keep using it
so it gets deep down your skin even after you don’t see redness. It worked like
wonders following his rules. However, it started to not working after a few
months.
So I've been doing my research and
came across WATER FASTING. I thought 'ok this is my cure!' But after 25 days
into it I think it was the max I could do. I started cramping in my legs and
fingers by just holding a cup! My face went very red once I started fasting but
eczema was actually improving even though I looked tomato all the time. Improving
as in the spots and bumps disappeared and just turned into flat red skin! I
thought yay! But after 25 days of water fasted I ate again and my eczema
started to get worse from then onwards. I was very worried and thought ‘omg I
shouldn't have stopped fasting etc etc’ then one night in July 2013 I found Red
Skin Syndrome. I thought ‘oh that's not me’. Skip. Then after more searching.
It was actually STEROID ADDICTION!! Now all this shit makes sense!!!
I am addicted to steroids and all
this eczema is STEROID-INDUCED ECZEMA - a rebound effect of all the steroids
I've been using!! I was kind of relieved but at the same time angry at doctors
and myself for being so dumb! I even have cataract developed because of so much
steroid usage :( no one has ever told me about steroids having any effect on
one's eyes. Why?!
But now I have finally found a cure
to this miserable life! Topical Steroid
Withdrawal is my cure!!! I stopped applying topical steroids as
of 15th of July 2013. I will survive this TSW journey (my seventh fucking last ever TSW) for my loving family. I have two
lovely boys who are 2 years old and 9 months old. My husband and parents are wonderful and the most supportive persons I have in this TSW journey. I must
heal for them!
you are very tough woman! undergoing 4 times withdrawal, and during pregnancy? how was your kid? does he have eczema too? It‘s really hard being pregnant with tsw. Protopic is just bad as Topical Steroid. It‘s really depressing but your words encouraged me to fight. I must heal for them. We must heal for them.
ReplyDeleteThanks hun. Yeah more like stupid me needing to do TSW 4 times and not realising! My first child has very milk eczema on thighs n arms. He's allergic to cows milk and I just put a barrier cram on his eczema and it doesn't get worse usually. Kinda comes and goes. But I'll just let his body and immune system fight for it naturally. It's not serious at all so I'm not overly worried. My second son I used topical steroids while pregnant cos the dr said it was ok :( he's just got dry skin. Not really eczema. So no worries babe. Ur baby may not get eczema at all. Good luck with your pregnancy n take good care xxx
DeleteHi, my husband is goin thru TSW n nw is the 4th mth. Everyday is hell n he lies in bed everyday. He is taking tcm herbs but he cnt stand the cold n pain in his mouth n neck. Few tcm physician suggest that he take steriod injection n tcm together. I wish to ask u. Y did u stop taking tcm aft u hav seen improvement, instead u applied steriod again ? Wer v confused nw. Wer thinking if he tak steriod to relieve his pain temporary n then tak tcm, wil he suffered more later ? We wish to find a cure to this nightmare. At the same time, we hope he wil suffer less pain.
ReplyDeletehi there, i'm sorry your husband is going through this hell journey. it must be so hard for u too. it was hell for me months 2-5 then things started to get better. I hope ur husband and u get relief soon. i went back on topical steroids cos TCM herbalist said it was ok and i didn't know about TSW then and obviously the TCM herbalist... all this time i saw TCM herbalist they say it was NOT ok to take oral and injected but topical ok. but all them were wrong in my case. i remember reading somewhere that Dr Fukaya says that there seems to be no rebound effect with injected/oral steroids in some of his case studies but i had severe rebound effects with oral steroids tho face very swollen and took a week or two to swell down, i couldn't work. don't think i did with injected i only took it 2-3 times tho. but steroids are just such bad things i will never go back to it. i would just endure the pain now and get a good ending later. i am taking steroid anti-inflammatory eye drops now because of post-cataract surgery and im only taking it cos if i don't there is a chance my eyes get infected and dr says treatment involves having more stronger steroids. so no way! the skin around my eyes have improvred lots since those eye drops (lots of dead skin just peeled off easily) and i'm scared once i stop the drops my skin will get worse again. i hate this i hope it's not severe once i stop. u and ur husband will get through this, it is tough but stay strong and strive through. i won't take steriods for temporary relief myself personally as I think it's just going backwards and even tho I am on TCM it just means the road to healing will be longer. but do look into other cases esp the Japan case studies to get more information before ur husband decides to go back on steroids for temporarily relief during TSW. take care, keep me posted, u both will be in my prayers xxx
Deletehave a read through these sites if you haven't http://www.itsan.org/eczema_questions_answered.html
Deletehttp://mototsugufukaya.blogspot.co.nz/2013/06/paradoxical-idea-of-systemic-steroids.html
http://mototsugufukaya.blogspot.co.nz/search/label/A%20case%20of%20withdrawal%20from%20TS%20oral%20steroids%20and%20CsA
Thks alot for the links. V grateful. At least we knw what to do when wer in the hospital. My husband was warded shortly after reading ur reply. The cold was so unbearable and he stayed there for 5 days. Taken oral steriod n only applied lots of QV moisturizer. Rejected doc suggestion to use topical steriod, autoimmune drug n protopic cream. He is better now. Cold, itchy, burning chest n redness were less severe. Better than last time, 24 hrs bed ridden for 4 months. Now taking tcm n uvb ray treatment. The uvb ray treatment is a backup plan so that he wont flak up v badly again aft stopping oral steroid. Oral steriod hav to b stopped aft consuming for 1.5 mths. V happy to see my hubby walking n doin simple tasks. V thkful to u. V happy to see ur recent pictures. Hope all of tsw warriers wil b back to pink of health soon.
ReplyDeleteI went through very bad shivering days too, then sweating days. It's the body needing to regulate itself. This happens with other drug withdrawals too. I understand the feeling of needing to apply moisturisers every few minutes! But do research and consider about withdrawing from all moisturisers, it was the best decision I ever made in my TSW journey personally, see links: http://skinofrose.blogspot.co.nz/2012/07/to-moisturise-or-not-to-moisturise.html
Deletehttp://skinofrose.blogspot.co.nz/2013/09/tsw-event-report-from-japan.html
http://topicalsteroidsurvivor.blogspot.co.nz/2013/10/moisturizers-harmful-or-helpful.html
http://mototsugufukaya.blogspot.co.nz/2013/06/is-moisturizing-really-help-to-cure.html
http://topicalsteroidwithdrawal.blogspot.co.nz/2013/10/moisturiser-addiction.html
I hope the UVB ray treatment is helping, Sun exposure has been said to help with healing a lot esp in the late TSW stages. I hope your husband gets better day by day and you stay strong too. you are doing a wonderful job taking care of him :) xxx
Have you tried laser treatments?
ReplyDelete@Anonymous For skin? No I haven't. For my left eye I have had laser surgery. :)
ReplyDeleteI really felt for you reading your story, I have a very similar story to yours, have gone thought many trial and errors. There are days where I just want to hide and almost scared to look at myself. You are a very brave woman, your story is very encouraging :)
ReplyDelete@Ida TangHi Ida thanks for your kind words. Sux that some of us need to do all the trial and errors to find our way out. I hope you have found yours and love looking at your beautiful reflection in the mirror now. Am enjoying your recipes on your blog, great blog. All the best~ xxx ahfaye
ReplyDeleteThank you for sharing your fight against tsw!
ReplyDeleteYou are surely one strong woman!
I have moderate eczema and started phototherapy 5 weeks ago.
I'm wondering your thoughts about it...
There was a study that I read that said it's suppose to suppress itch and inflammation by modulating the immune system in our skin.
I feel less itchy these days!
Would you try phototherapy?
Does the sun help you generally?
Thanks,
Sophie
@Sophie Thank you for your kind words and support Sophie. I'm glad phototherapy is working well for u and the itch has decreased! I choose to empower my immune system naturally and not suppress it chemically/synthetically in any way. Natural sun light definitely helps as Dr Rappaort and Dr Sato has outlined with his TSW patients, this is after the bad oozing/weeping stage though. I try to soak myself in natural Vit D whenever I can :)
ReplyDelete