A-Z of Corticosteroid Withdrawal: Gooey Eyes

G is For Gooey Eyes:

Any steroid cream used on the face is likely to affect more than just the facial skin. there is a lot of evidence to show that it can affect the eye too. In fact, prolonged use of potent steroid creams on the face has been shown to cause glaucoma and cataracts.

When I used steroids daily on my face (betamethasone), I had recurrent eye infections, as well as nasty herpes infections on my eyeball (Ugh!) and eyelid. I never made the connection between the infections and the steroids, but I think that the creams lowered my immunity, thus causing the repeated infections. Interestingly, now I have stopped the steroid creams, a good side effect has been that I have had no eye infections at all, or any cold sores on my face or around my eyes.

However, this brings me to the rather odd subject of eye goop! Let me make this clear, most of the time, eye goop is NOT infection. It is just a weird side effect of steroid withdrawal that occurs in some people. Although I am not a doctor, my theory is that just as the blood vessels in the skin are dilated and damaged by TSW, so are the blood vessels in the eye, causing swelling and discomfort just like in the skin.

My personal experience has not been too bad. In the very early weeks of withdrawals, I noticed that my eyesight was blurry. I would try and read text on the TV and it was all blurred. I thought I was losing my sight! I quickly made the connection with the TSW though, and the phase did pass after a couple of months. I can see fine now!

I have had the odd morning when my eyes have been swollen and gooey on waking. This disappeared as the day went on, thus showing that it was not infection, just a side effect of TSW. Here is a picture of my eye at its worst:

That particular morning, I woke up with puffy, gooey eyes. You can see the skin under the eye is saggy too.

Here are a few comments from the google forum about their experiences with eye problems:

"They were literally oozing so much stuff
last night I just gave up and let it be. It was a sort of sticky goop
coming out and I was having trouble seeing. "


"We also tend to get lots of eye goop and hay fever-like symptoms, so in the beginning, I'd wake
up with my eyes crusted shut.  Now after a year, my eye goop is almost
gone, eye puffiness is minimal, and my runny nose is a lot better. "


"I think eye puffiness is common. I certainly woke with puffy eyes for many weeks and my eyes were usually full of yellow goop. For some reason, this persisted much longer in one eye (my right eye), in fact, it has only been in the last few weeks that I have noticed that I am not waking up with a puffy right eye. I recall others saying something similar"


In conclusion, eye problems, including puffiness and discharge are completely normal during withdrawals. on a bright note, recurrent infections, such as conjunctivitis and herpes may become less of a problem once steroid creams are stopped.

Day 161 Short Flare

My skin has descended into another mini-flare over the weekend. I thought I had seen the last of the oozing, but last night I woke up in the early hours with sticky ooze on my elbow flexures, chest and neck. The ooze was nowhere near as intense as previously, but it seemed like a huge step backward for me. I currently have no flaky skin, but plenty of red, juicy skin, which feels tender. My kids want hugs, but I wince with pain when they hold me tight!

I try to be philosophical and view each flare like a dose of medicine, necessary in order to heal a little more. I know that these flares are short lived, now, fizzing out after 2 or 3 days, and that helps keep me strong. The periods between flares are longer now, usually a week or more. In the beginning of withdrawals, I would have weeks of flares with the odd break, but it is the other way round now.

I know stress is a major cause of flaring, and am a little concerned, as I am due to move house in the next couple of weeks. I am sure that the upheaval of moving will cause my skin to go crazy, but I will have to cross that bridge when I come to it. I feel grateful that at least I have five months under my belt and I am in a good position to help and share experiences with the many new people that come to the forum every day, looking for answers.

Every day is a day closer to healing.

A-Z of Corticosteroid Withdawal: Fatigue

F is For Fatigue:

Almost everyone who stops using topical steroid creams experiences a severe wave of fatigue at the beginning of withdrawals. The tiredness is overwhelming, and it certainly took me by surprise when I first stopped the creams.

The fatigue first hit me a few days into withdrawals. I suddenly felt overwhelmingly tired and lay slumped on the settee day after day, with little energy to even get up and perform basic tasks. It was as if something had sapped every last bit of my energy. All I wanted to do was sit quietly and stare out of the window, which is not like me at all. I am usually the kind of person who gets fed up being stuck in at home and wants to get out and do things, but this fatigue knocked me down hard.

Despite the overwhelming tiredness, my sleep patterns were haywire. I would go to bed, feeling exhausted, but lie awake for hours, before dropping off for a couple of hours and waking again later. in the early weeks I would routinely lie awake until midnight, fall asleep, wake at 2 a.m., sleep again, wake at 4 a.m. and then go into a very deep sleep until I had to get up. It was if my body clock had shunted ahead by a few hours. Even now, five months into withdrawals, my eyes pop open at 2 a.m. every morning without fail, but thankfully, I soon fall back asleep again nowadays.

There is no doubt in my mind that the extreme fatigue is down to stress on the adrenal glands. These little glands sit on top of the kidneys and are responsible for regulating many important bodily functions. One important hormone regulated by the adrenals is Cortisol, an important steroid hormone. It affects the immune system and blood sugar levels in the body and is produced in response to stress. The body detects cortisol levels and either increases or decreases production on demand. Unfortunately, when steroid creams are used, the cortisone in the creams fools the body into thinking it is producing sufficient cortisol, and the adrenal glands slow down cortisol production. When steroid creams are suddenly stopped, the adrenal glands need time to recover and start making their own cortisol again, and this is what causes the fatigue.

Here are some of the experiences that the members of the google forum have had concerning withdrawal fatigue:

"...I had crisis on Tuesday, headache and tiredness, so I was sleeping
almost all day (of course I didnt sleep at night, I think its been 2
months now since the last time I could sleep before 6 am).
Does anybody know what is the case with this insomnia?"


"Hi, just a quick question to anyone out there ... did the Red Skin Syndrome
make you feel more tired than you have ever been in your life?
I slept in the afternoon yesterday for three hours, then last night from
12pm to 9am, now, i feel as though I want to go back to bed already.  I
have been like this for about three days now.  Night sleep is restless, but
that's nothing new.  The terrible fatigue, however, *is* new.   I know its
a trivial complaint compared to the various other symptoms we are all
enduring, but is this terrible tiredness usual?  I feel as though I never
want to wake again.  thanks. "


"I just want to be in my bed even just when face and neck is
flaring, having no energy. Originally when flaring on steroids I thought it
was just that I didnt want to face the world (that too!), but it feels so
much like fatigue, which leaves after flare subsides. The amount of energy
I have between flares can be enormous, it's just a rollercoaster, one hour
at a time. "

This extreme tiredness is a symptom very early on in withdrawals. As the adrenals heal and the body begins to recover (we are like burn victims), energy levels slowly return to normal. Those in the early stages of steroid withdrawal need to rest and listen to their bodies. this phase will pass soon enough.

A-Z of Corticosteroid Withdrawal: Excess Skin

E is for Excess Skin:

Excess skin is a weird symptom associated with topical steroid withdrawal. I am thankful that I haven't really had much of a problem in this area, other than the skin being a little baggy around my finger joints and wrists during bad flares, but this has subsided.

However, the problem of loose skin, lacking elasticity is a very common side effect when people stop using steroid creams. Here are some pictures of skin affected this way:

I am not a doctor, so don't understand why the skin reacts this way, maybe if there are any doctors reading this, they could shed some light on the subject for me! It's pretty scary thinking that prolonged steroid use can affect your body like this though. The good news is that the skin apparently does return to normal eventually, so this effect is not permanent.

Here are some comments that the members for the google group have made regarding their observations of excess skin on their bodies during steroid withdrawal:

"I'm just wondering if everyone is experiencing the extra thick skin in
joints.
In my elbow, knee and ankle joints I am finding it difficult to move freely
because
of the extra thick skin and/or swelling there. I am not sure if it's the
skin
or if it may be swelling. I can't squat for example and my ankles are very
tight if I try to point
my toes. "


"Yes (my son) has lots of extra skin around his wrists/hands/ankles/feet and
some appearing on his lower back, just been reading the bumph the hospital
sent home with us last week, and its says that 'blistering. scaling and
thickening is lichefication.  The extra skin that (my son) has seems to be
formed by much thicker skin, almost like an elephants hide.  Sorry bizarre
metaphor but it is thick and folded like that.


"right now I have elephant hands, for sure. They look ridiculous, can't
believe they're mine, they look way too old..."


This odd and distressing symptom of steroid withdrawal is only temporary, but is obviously very scary for the person experiencing it, especially if it is a young child. This symptom is yet another powerful evidence of the damage that overuse of steroid creams can do, when potent creams are used over a long period of time on the skin.

Day 157 TSW Blogs and Stories

Since my lovely improvement photos on day 148, my skin decided to rebel and go into a slight flare. The flare has mild compared to previous ones, but was still enough to put me on a downer, as I really wanted to believe I had seen the worst of it and that things were on the "up" for me.

Arms that had been white a few days before became red and blotchy once more and my face, which had been clearer than ever suddenly developed sore patches, which oozed a watery substance. This hit me quite hard emotionally.

Luckily, the flare has been quite short lived, and I felt well enough to go out last night. Ironically, despite the fact that I had been bemoaning the state of my skin earlier that same day, a friend of mine passed comment on how good my skin was looking.

"Your face looks great" she said. "So much better."

I was quite taken aback because I thought I looked grotty!

Then came the best line, which really made me smile....

"Have you gone back to using the steroid creams then?"

No! I blinkin' haven't!

It was good to know that people are noticing an improvement in my skin, even during what I would consider a bad phase. It just goes to prove that we don't need steroids to have good skin.

Changing the subject, the blog list on the right hand side of my page has grown massively over the last few days. More and more people are waking up to the idea that steroid creams are bad medicine, and are getting themselves, or their children off the creams. Please, if you haven't read any of my featured blogs, take time to look at the new ones.

"Itchy little world" is a great resource for all things allergy related. The mom who writes the site tried using steroids on her child years ago and found, like I did, that they cause terrible rebound symptoms.

Parents are really getting on board and challenging the idea that potent steroids are safe to use on kids for extended periods. Some of the blogs that I feature, such as kelou's blog and the new blog by Kline's mom are by parents who decided to stop using steroids on their kids after many years of daily use. The future is bright for these kids, as studies have shown that kids heal a lot quicker than adults from steroid addiction as they have less accumulated steroid in their bodies. My heart goes out to these amazing parents. Please read their stories.

Other blogs that I feature are International. Spela and Fay's blogs are designed to reach the International community and educate the world about the dangers of steroid cream overuse. In many countries, steroids are used as skin lighteners and addiction is common.

If anyone has a steroid withdrawal blog that they would like me to add to the list, please let me know. Please note that I am specifically interested in blogs about personal experiences of people coming off steroid creams.

A-Z of Corticosteroid Withdrawal: Depression

D is for Depression

Depression is a very real side effect of topical steroid withdrawal and although it is not a physical symptom, it can be just as devastating.

We know from articles written by Dr Rapaport and Dr Fukaka that healing from steroid withdrawal takes a long time. People who have used potent steroid creams for many decades may take several years to completely get over the damage that the steroid creams have done to the body and blood vessels. Withdrawal symptoms are hard to deal with, including burning, oozing and pain. Prolonged exposure to these debilitating symptoms causes the sufferer to become deeply depressed, despairing whether they will ever heal or regain normal skin.

It is not just the way that the skin feels that causes depression. it is also the way the skin looks. TSW causes a red, flushed face, sometimes with oozing and yellow crusts, sometimes with pustules and pimples on the skin, or scratch marks due to itching. Facing the world, with its high expectations of physical perfection, is a daunting task. I feel ugly all the time.

During the first few months of steroid withdrawal, the adrenals go crazy, causing extreme tiredness and an inability to perform even simple tasks, like cleaning or preparing food. If someone has had a previously active and busy life, this sudden lack of ability can be devastating and depressing.

I have had highs and lows over the last 5 months of steroid withdrawal. When my skin is good, I am so happy, but it is awful to see good skin disappear into a flare and this causes me to get very sad and teary. I have cried a lot during this time, sometimes shouting out and  screaming because of my inability to cope. in the early stages, when my body was on fire and all I wanted to do was lie quietly on the settee, I would wail and moan like a child having a tantrum. It is incredibly draining, both physically and emotionally.

 Emotionally, I am in a lot better place right now, although it only takes a brief flare up to make me feel "down" again. I actually have been flaring a bit over the last 3 days, after a long period of good skin. This has made me quite teary, as I really thought I was over the worst of it now.

Here are some comments from the Google group about TSA and depression:

"..am i the only one who can't do this? i'm trying really hard to forget what
i've lost and forget this pain/itch/discomfort.. but this depression is
like a blackhole that sucks me right in. sure, i'll feel fine for maybe 2%
of the time.. the other 98%, i'm back to that creature who locks herself
out from alot of people.. i can't face and interact with them right now.
even the closest people to me.. i find it hard to face them for the fear of
showing them how depressed i actually am."

"Tears are a constant.  Depression has arrived.  I'm not strong enough for this."

"I had many days of crying. Just defeated, depressed, skin aching, crying! My
husband would lose it when I was crying. It hurt him to see me like that.
Now we have days of laughing and hugging, which I couldn't do for a LONG
time due to painful skin.
Most of the time when I was crying, it was what I was thinking: Will this
flare ever end? Will I ever be normal? etc. Try to stay in the present
moment. One day at a time.
You can do it! I did it and it almost broke me. "

Topical steroid withdrawal is a dark time and anyone considering stopping steroid creams should prepare themselves for the fact that there are going to be hard times ahead. I am not writing this to put anyone off steroid withdrawal, but people need to be realistic about how hard it is.

When TSW gets me down, I try and focus on all of the success stories and pictures of people that are healed. I imagine myself in that position at some point in the future. Some of these photos are amazing and prove that healing IS possible. If we stay positive and have a confident outlook, we can successfully ride the wave of depression that comes with Red Skin Syndrome.

A-Z of Corticosteroid Withdrawal: Chills

C is for Chills:

The skin is the largest organ of the human body and responsible for many body functions, including the regulation of temperature. it is understandable, therefore, that when something is wrong with the skin, body temperature can fluctuate and chills and sweats can occur.

Chills are a common symptom of TSA/TSW and a symptom that I personally have experienced. When I first stopped using steroid creams, I would fluctuate between feeling very hot and very cold. I remember sitting on the settee with a blanket over me and I could feel the heat rising off my body in waves, as I shivered and juddered under the blanket.

Now I am five months into withdrawals, the chills are less intense, but I still experience them in the evenings quite often. I wrap myself in layers of clothing and start shaking and shuddering, whilst everyone else in the room tells me that they are perfectly warm! Chills may or may not be accompanied by sweating, as many people find that steroid use over a number of years actually causes sweating to stop, as it suppresses the sweat glands. In fact, sweating can be a good sign, as it shows that the sweat glands are no longer paralysed by the steroids in the body, and the body is slowly returning to normal.

Here are some comments about chills made by the members of the google group:

"I am 7 weeks into w/d and the whole time the chills have affected me quite
bad especially today, I look like a crack head needing my next fix is as
best as I can describe it. Its peak of summer here in NZ (23-27 degrees)
which is quite hot. When I get in the car I'm cranking the heat instead of
the AC.!!"

"I did get really bad chills.  It was mostly in the first
few months along with the profuse sweating.  My body temperature was
totally out of wack.  I'd be shivering violently and bundled up in
blankets while everyone else was in T-shirts.  Meanwhile I was
sweating and oozing through my clothes.  I hated this stage because
the sweat would make me itchy and I was always freezing."

"While on steroids, I had chills and shivers all the time.  I remember my
teeth even chattering.  But I am not sure I was really cold.  It was a wierd
chill that almost came from inside the body.   I could not stop shaking... "

Chills are an unpleasant symptom of topical steroid withdrawal, but like most symptoms, they do tend to subside over time.