What does it feel like?

The topical steroid withdrawal itch is pretty brutal, the itch isn't just an itch I can easily ignore.  

When I ignore it, I start feeling the itch crawling all over me, but the itch isn't just an itch, there's pain associated with it.  When I try to ignore it, it feels like pins and needles being jabbed into my skin and then sends me into spasms.  The burn feels like it comes from underneath the skin, it makes it incredibly hard to sleep.  Some people say this itch is a good thing, it's the skin repairing itself and that repair comes from underneath the top layer of skin.  

Interestingly enough, during the day the itch or burn isn't bad.  It is only when I change environments when the itch/burn acts up.  The moment I change clothes, I immediately feel itchy.  The worst itch is the one in the middle of the night.  I can't lie on my back because its itchy, can't lie on my side because my arms and torso are itchy. I can really rest my neck on my pillow because that's itchy as well.  It seems the itch is worse when it's around 3am in the morning.  It not only stings, it actually feels like it burns, it feels like my entire skin is on fire and pins and needles are attacking me.

The thing with the itch is that if I start scratching it feels good, but then it travels to somewhere else on my skin and I have to scratch there as well.   It's hell.  Of course the lack of sleep is really brutal, I slept maybe two nights completely through since I started TSW.  Sometimes I actually dread falling asleep because I know that horrible itch is going to come.  I really want this to pass.  I think my flare is waning, but the itch/burn are still very intense.  

Topical Steroid Withdrawal - Day 13

Foot has improved a lot, still on moisturizer withdrawal, but it's itchy as hell and I've opened up some new wounds :-(  It'll probably need to go through another few zombie cycles from the looks of things.

My skin is starting to dry out in some places but it is still insanely itchy.  This tsw flare has gone on for almost 2 weeks now.  I was hoping my flare would only last 2 weeks and I would start to heal, but it looks like this flare is payback for all those years of topical steroid abuse.

Neck is still itchy and it's push down towards my upper chest area, it's especially itchy around the collarbone area.  My upper abdomen was quite itchy as well as is my inner thigh.  Hell it's all itchy lol.

TSW Day 13 - 2014-04-13

   

Topical Steroid Withdrawal - Day 12

There's a little bit of improvement.  My neck is no longer oozing as much, it has started to dry up.  It still hurts a lot and is really itchy at the fringes, which leads me to believe it is trying to spread its evil.  

My foot as you can see has improved a lot, my left foot is a completely different shade than my right foot which has been spared so far.   My neck is clearly developed into red skin syndrome (RSS) by now.  The eczema on my arms are spreading, but the original bumps that started it all have subsided a bit.  This is going to be a long road to recovery.  I'm still using ACV every few hours.  I started taking oatmeal baths, I wish I had done this eons ago, it is so unbelievably soothing.  

Topical Steroid Withdrawal - Day 9

My this point, I was concerned about possible bacterial infections because of all the wounds I was inflicting on myself.     I've tried using isopropyl alcohol on my eczema (really stings), apple cider vinegar (also really stings), hydrogen peroxide (omg stinging), and salt water (hug-the-pillow crying out loud stinging).

Then I realized, I should actually be watering down this stuff.   I tried different combinations of water plus the stuff above (except the salt), but it seems like the apple cider vinegar (ACV) works best, it stings a little but it also soothes afterwards.   My neck was starting to ooze.  That night I saw my girlfriend's parents saw me at dinner and her mom gave me some bee pollen both to put on the eczema and also some for digestion.  The bee pollen does seem to have a nice soothing effect.

I haven't been sleeping well.  I can fall asleep alright, but within a few hours, the entire body starts itchy and there's pain.  The pain is unlikely anything I've ever experienced before.   It's like the skin is on fire, needles and pins pricking me all over but coming from underneath the skin.  The scratching is just a side show.  People on the ITSAN forums say that the pins and needles stinging is actually the skin trying to repair itself.     I try resist scratching but it sends my arms or back into involuntary spasms.   Plus, how could I possibly get sleep when I can't even rest my neck on my pillow?   :-(

Day 9 - 2014-04-09

Topical Steroid Withdrawal - Day 7

On Day 7, I had to leave work early and go home.  I was feeling terrible.  My office's heating system is really messed up and it was 29.5C indoors!   I had a fever and crashed when I got home.   My parents came by later that day to see how I was doing.   I was popping a few ibuprofen to deal with not only the fever but also the inflammation.   My dad helped me take those pictures of my back which are really hard for me to take myself.  The red patches were spreading to my neck.  I must have had a field day on my arms the night before because they were bloodied :(

Day 7 - 2014-04-07  Eczema is spreading

Topical Steroid Withdrawal - Day 6

I stopped using all topical steroids on April 1st, 2014.

After reading up on topical steroid withdrawal and watching videos of people who successfully beat this thing, I rationalized that my body was trying to have a flare, but I was suppressing it by using betamethasone.  I stopped using topical steroids cold turkey hoping it would allow my the flare to continue on its own.   And boy did the flare did resume!  Almost immediately the day after the itching and burning started.   At around this time, I started seeing a traditional Chinese medicine doctor and he thought my foot might have some fungal infection (athlete's foot) in addition to the eczema because he saw some circular patterns.  Of course I was also given some foul medicine to brew and drink twice daily.  That stuff makes me fart all the time and the farts smell pretty horrible.   The chinese doc gave me a TCM antifungal cream, that cream burned my foot and it caused the skin on my foot to crack.   I stopped using the cream on my foot (it hurt too much) and let the thing dry out, the TCM doctor did say to let it dry out to avoid bacterial infection.

It was around this time that I was reading about moisturizer withdrawal (MW) on the ITSAN.org forums and how it can speed recovery.  The theory behind MW makes a lot of sense.  The skin needs to form a scab to recover but moisturizer prevents the skin from doing so.  Furthermore, using moisturizers is apparently not a great thing to do because it tricks the skin into thinking it doesn't need to produce/retain its own moisture anymore, which is what leads to further eczema.   

I cleaned my foot with isopopyl alcohol (which helps dry the skin and is anti-baterial).  You can see my foot looks pretty bad, it really scared me at first because it looked like a zombie, the dry skin was initially really painful, but after a while I would get used to the pain and the skin became stronger and the scabs would lessen.  I was itching and burning all over, my foot was the least of my areas of concern now.  

2014-04-06

The Beginning

This is a picture of what my arms and legs looked like less than a week after I started getting these mysterious bumps on my skin.  The walk-in clinic doctor diagnosed it as folliculitis and gave me fucidin (an antibiotic oinment) to treat it.  Needless to say, that didn't work.  

2014-03-08

My Topical Steroid Addiction Story - Part 2

In 2012 I was also diagnosed with high blood sugar.   My A1C was 7.1, which is borderline diabetic and well beyond the so-called pre-diabetic range.   In an effort to get my A1C down, I lost 25 lbs by the end of 2012 but my A1C was still around 7.2, which was insane because I only weighed 140 lbs and yet I had the blood sugar levels of a diabetic which is usually due to obesity.  I eventually learned that some topical steroids are actually glucocorticoids, they cause the blood sugar levels to go up.

I stopped using any steroids on my foot sometime in 2013 and took another blood test about 4 months after, and my A1C was 4.8, shocking....  I thought I was in the clear.

During this time, whenever I was stressed, I would sometimes get small rashes.  I would subdue these rashes with the leftover steroids that I wasn't using on my foot.   Usually in two or three days the rashes would disappear and I would stop using the topical steroid.

In March of 2014, I did a run and a workout (not something I did regularly).   I started to get a rash on my abdomen area.  That rash looked like goosebumps but red.   They were itchy.  I managed to subdue the ones on my abdomen area by using some topical steroids.  I worked out again, and a couple of days later, some more bumps appeared, this time on the inside of my thighs.  Then a few more on my arms.  I went to a walk-in clinic, the doctor thought it was folliculitis and gave me some anti-bacterial medication.  I aslo had a cracked thumb, she told me it was definitely eczema and gave me some Lyderm.  I faithfully applied both on the prescribed areas.

Within two days, those bumps got bigger, to the point where they were the size of peas.  I went to the ER.  The ER doctor thought it was a case of scabies, but also gave me a referral to a dermatology rapid access clinic, just to double check his analysis.   Over the next two days, the situation got progressively worse.  I went to see the dermatologist.  The dermatologist said it was eczema...  I was emotionally crushed.

I had never been able to overcome the eczema on my left foot and now it was attacking the rest of me.  I felt angry, angry at the weather (it was a really cold winter), angry at all these misdiagnosis, etc.  The derm gave me 100g of betaderm (Betamethasone) and said in 3 days it would be gone.  I put the betaderm on, I put it all over my body like it was a moisturizer.  It did reduce the inflammation, but it didn't get rid of the itchiness and I was still getting more and more new patches elsewhere on my body.   I had spreading eczema.

I went to go see a traditional chinese medicine doctor.  He gave me some foul tasting concotion to take for 4 days and acupuncture.  I was skeptical it would help and it didn't help.  I was still get some occasional new spots and the itchiness wasn't dissipating.     I also saw a naturalpath and a different traditional chinese medcine doctor.  They all prescribed their "remedies" and got my hopes up, none of them worked.

I visited my regular doctor and she referred me to another dermatologist and gave me some topical steroids.  I was starting to get skeptical.   Their remedy is always some topical steroid and the one my doctor gave me was actually the one that caused my high blood sugar before.

I then started doing some research on the internet and that's when I stumbled upon http://www.itsan.org and learned about topical steroid addiction.   I realized my skin had become dependent and addicted to steroids over the years and that's why nothing worked.  I stopped using steroids for a while and my skin was trying to rebound, but I suppressed it using the betamethasone.   I immediately stopped using all topical steroids on April 1st 2014.  Within a day, the flare that had started 2 weeks earlier resumed in earnest.   I'm now in topical steroid withdrawal and this blog is going to be the story of my long road to recovery.

My Topical Steroid Addiction Story - Part 1

I'm going through Topical Steroid Withdrawal right now and it totally sucks.  Here's my steroid addiction story...

Once upon a time, I lived in Seattle and I also used to smoke (I know nasty habit).  I also had a kitten.   I didn't have any health problems... yet.  After the kitten grew up, I started getting asthma from his dander.   I was given an albuterol inhaler.  My doctor encouraged me to give up the cat, I resisted.   Somedays, I would avoid going home because I knew within 30 minutes of getting into the door I would have an asthma attack.   I lived in the cat's home.

I eventually did get rid of the cat, but I couldn't get rid of all his dander.   I was still asthmatic.  The smoking didn't help, it sometimes led to asthma attacks.   It was around this time, that I started getting some white patches on my back.   I had developed vitiligo.  The derm put me on clobetasol (an extremely potent topical steroid) and protopic (an immunosuppressant) to see if the pigment would return, it never did.  I think I was on that regiment for about 9 months.   I gave up, the vitiligo wasn't spreading and stopped using clobetasol and protopic.    Turns out albuterol is considered a steroid, it is sometimes used in bodybuilding and injected in liquid form for its anabolic effects.

In 2011, I moved back to Toronto (yay home), and my asthma disappeared within weeks.  Usually Seattle's climate is better for asthmatics, but the opposite was true for me.   It could have been that I left the dander infested place and moved into a place no one had ever lived in.   A few months later, I quit smoking.

In 2012, I went on a trip to Greece and Turkey.  I developed a small eczema rash on my left foot. I tried using some hydrocortisone on it, it didn't work.  I went to go see the derm to see what he could do.  He gave me some topical steroids for the rash.  It didn't really go away, in fact it was itchier and spreading.  He gave me a stronger topical steroid and told me to wrap it in serran wrap to make sure it got absorbed.  I listened to him, but he situation continued to worsen because it was itchy and I kept scratching it.   Eventually, I was using protopic on that foot and the condition seemed to start to fade but I read the protopic is potentially very dangerous and it was inconclusive whether it could lead to cancer, so I stopped that right away.

I still wanted this eczema to go away, I started using polysporin on it.  Polysporin is an antibacterial ointment that's sold primarily in Canada.  It actually helped quite a bit, but I was still scratching it because I put it in a occlusive dressing, being of the belief that if I kept the moisture in, it would keep the skin from drying out.  I would later learn this is a fallacy when it comes to skin moisturizing.  How naive I was then...