Topical Steroid Withdrawal: How bad can it be? (Part 1)

I am going to frighten you a little with the next few posts. I will show you how horrid I looked (and still look at times). Seriously I was surprised by the way my body reacted to the lack of steroids. Surely far from glam. In fact I I feel more like a clam. I was shocked by how horrid the symptoms were: 

On ITSAN website, http://itsan.org/eczema_questions_answered.html, it lists down for us the common symptoms of topical steroid withdrawal. I should really be a spokesperson for TSW as I have almost all the symptoms listed. In bold is quoted from the website. 

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. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads. 

My skin literally BURNS. In a matter of two weeks (when I was probably in my 3rd month of withdrawal), my skin flared, turned red and black. It was horrendous looking as my neck turned black and swelled. I looked like a 3rd degree burnt victim with burnt markings on my face and ears. I believe I shocked everyone (colleagues, students and church friends). Alex (hubby) was away in San Francs when I was at my worst (how glad). I told him he's spared from seeing me in that ghastly state.

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.

I am sure my students can verify this. I can't stop scratching even when I am in class teaching. I am so itchy and probably scratch 24/7 a day. The itch is so unbearable and nothing seems to help at night. Even the body fails to respond to the antihistamine. I used to take one antihistamine and be knocked off for the next 12 hours. Now, it can at most grant me a 3 hrs sleep. My scratching aids include my well filed nails, all sorts of combs, my mum (who has really nice sharp nails) and kids (who happily scratched my back hoping to score some brownie points I guess).  

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.

This is such an amazing part about TSW. I never knew I could shed sooooo much skin a day. 

New skin is formed as the previous layer is burnt off and the burnt layer will dry and shed. Most of the time, flakes are caused by scratching. It is my daily routine to sweep up the flakes. It can really be quite disgusting to see piles and piles of skin daily. But I still like to see the flakes because I believe my skin is rejuvenating. New skin is formed and that's nearer to healing. Oh yes, I believe my hair sheds with the skin too... somehow. Ok blame it all on TSW!

Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.

Oh my, this is really bad bad bad for me. My edema is sudden (fast and furious) and my feet are still super swollen today. I can barely fit into my crocs slippers and birkenstock. In fact I have been wearing these slippers everywhere I trod. Including church on Sundays. How pathetic. Indeed I bade farewell to my Chanels and Loubs (for a good few months I'm sure). I am looking to the day they can see day light again.

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.

Need I say more, see this picture and you can imagine how bad my ooze is.

I will work on part 2 of the symptoms later in the day. How glad I am to find a little more energy to follow the kids out on a Saturday. I was home bound for the last 4 Saturdays. Poor hubby got to manage 3 super energetic kids. Plucking myself up today and hopefully I can manage...The Lord's strength is sufficient!  

Topical Steroid Withdrawal (TSW)

I have decided to put my hands to good use instead of running all over my body, scratching non-stop, digging into the skin till I see blood and ooze. I have a new found mission, to resurrect this blog and to write to educate you on what I am going through. Hopefully, you (and your loved ones) can and will be spared from this torture.   

Background: 

From a young girl, I have been prescribed topical steroid (TS) for my eczema. I remembered the sense of helplessness and bouts of tears when told that I will never be healed from this skin problem. Obediently and with complete trust of the doctor, I started my years with TS. Fast forward 20 years, I have been using TS (to be specific Beprosone Oilment) for more than half my life. 

New found knowledge:

Recently (thanks to social media and globalisation), my sis 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'.

New decision:

Dr Rapaport suggests that the only way to stop this addiction (and to be healed from eczema) is to STOP the use of steroids immediately! Not tapered approach. Stop completely and be closer towards healing. I was a little skeptical but I thought its not a bad idea to stop steroids anyway.  

Little did I realise the decision to stop TS means I am moving into a horrrid, horrifying journey of withdrawal. As what was describe in the video, "it is a  long and often painful withdrawal process that each and every steroid addicted patient must go through in order to permanently rid themselves of this horrible skin disease." 

Start of this TSW journey:
I am not exactly sure when was the last time I stopped the use of steroids. You see, I am not a hard core user. I use it sparingly on my feet and hands when there's flare (cold weather when I'm overseas, stress from kids and work (especially after every work review! Oh yes!) or maybe some food triggers-which I can never tell). Flares are not on a regular basis. Maybe once of twice in a month or even longer. I will always opt for alternatives like Chinese liniments or whatever ointment I can find to relieve the itch or to suppress the flare. However when all defenses fail, I will turn to TS, Beprosone.  

How horrifying to know how my body is messed up by TS (without even me knowing) till I stopped the use of it. I have never applied TS onto my face, neck or body but the withdrawal suggests how TS has invaded my whole body and created a big fat mess of my immune system and functions of the skin.   

I am probably into my 4th to 5th month of withdrawal. Subsequently from here I will 'rewind' a little to weeks back of my withdrawal and document my horrendous process here. Be patient as I need to return to my scratching now.... Arrgh!