This is going to be a long post on eczema and topical steroid withdrawal, as a reply to a comment / question I sent out a while ago. It’s not an argument or an attack, just a good conversation about skin, which for eczema sufferers is something we fight with everyday.

Apologies for the weird reply format, wonder-fullmusings. I can’t reblog and a reply doesn’t give me enough space for what I want to say.. and I have a lot to say.

_______________________________________________________________

My original question:

Hi there, I’m replying to your post about steroids. I disagree with you, I think there SHOULD be a fear of using steroids, I don’t think two weeks on, two weeks off steroids is a good way to live so I’m trying to get off them. The two weeks of suppressed symptoms just isn’t worth the rebound flare or the skin atrophy. My skin is more lax and damaged than my 84 year old grandmother’s. I HAVE used them correctly, but let’s face the fact that it’s not a long term solution. What do you think?
_______________________________________________________________

wonder-fullmusings:

“Hey there, thanks for the message, and sorry I took so long to reply to it.

I think that eczema is a chronic condition that has no long term solution. It sucks, yes, and I wish it weren’t the case, but it’s the truth. It can be controlled (well!) but it can’t be ‘cured’.

I realise that my message here isn’t one of sunshine and hope, but of constant hassle and inconvenience, but I’d say I’ve had a shot at living a much fuller life than would have otherwise been possible THANKS to proper use of topical steroids.

If you think that you are having trouble with atrophy, then I would recommend (if possible, as I realise if you’re American it might not be) seeing a doctor or dermatologist. They will be able to tell if the skin is actually atrophied, and prescibe a different course of action if that is actually the case or reassure you if not. Everybody is different, and two weeks on, two weeks off isn’t right for everybody (I personally don’t use it).

The people that run around tumblr fearmongering by posting unverified (and for all I know fabricated) sensationalist stories about people dying or nearly dying from steroid use, and then using that fear to promote belief in a supposed ‘syndrome’ that isn’t medically or dermatologically recognised and has had NO research published on it has become a very worrying trend, IMO, and it is also very concerning how uncritically people buy their claims.

Poorly controlled eczema is very serious and debilitating, and can lead to very serious infections that may require hospitalisation. I find it very worrying that people are putting themselves through this because they’ve been told it will cure them, when there is zero evidence (and anecdotes =/= evidence) to suggest that that is the case.

I truly do think that the people who are promoting these things mean well, but the fact that they can’t provide any concrete evidence for their claims, and promote such things as naturopathy and homeopathy in their place is telling. These sorts of “alternative medicines” are well-verified as completely useless, with absolutely no scientific basis. The reason these things don’t have any side effects (and are thus attractive to some people) is because they’re not actually doing anything in the first place. At best they give you very expensive urine, and at worst they can cause increasing severity of the condition.

Just because you want to believe in something, doesn’t mean it is true. I realise I sound like something of a killjoy, but putting yourself through hell when the end point is a fantasy is just ridiculous. Steroids ARE safe when used correctly, this is well-supported by the medical literature, and while I do think care and caution needs to be taken, promoting fear of a treatment that can provide a great deal of help is ignorant and irresponsible.

I realise by posting this that I’m not going to get through to the people who are promoting belief in this— but if somebody is unsure, then I very much encourage them to do their own research, and cast a very critical eye at the claims that are being made and what evidence there is to support them.”

_______________________________________________________________

My reply:

Honestly? I agree with most of what you’ve said. Anecdotes about healing are great but not evidence. I don’t really believe in naturopathy or homeopathy either, I liked your line about expensive urine lol. I’m also wary of self diagnosis, the internet is a notoriously shitty medical tool. Nor do I agree with the people posting things like STAHP USING STEROIDZ YU GUIZE, ITS POIZUNNNN!!1!1!! That’s unnecessary.

But I do know my own skin, and what I’m going through isn’t eczema. I’m well aware that this is an anecdote - but I believe what I do because to me it is not an anecdote, it’s my body and I know how my skin behaves and usually I know the triggers for why. This time I didn’t. Bear with me, my anecdote will lead into SCIENCE.

This year for the first time, I ran out of steroids and didn’t refill my prescription. Thought I was doing ok, but my skin didn’t plateau and stay “ok”. It got worse than it had ever been and was nothing like the eczema I had had my whole life. Instead it burned, turned bright red and spread like wildfire. Before I did any research or even talked to anyone about it, I realised the only thing I had changed was that I’d stopped using my steroids for the longest time in the last four years. I found some - not a lot, but some medical opinions online that agreed with what I thought was happening to my own skin. Try here, here, here, here, here. The keyword there is opinion. Doctors can and do disagree on symptoms and treatment. I wasn’t looking for evidence of so called red skin syndrome, simply looking for evidence that stopping topical steroids after a long period of usage - however proper - would create a reaction.

I found doctors of the opinion that topical steroid addiction, and hence withdrawal is real, just as morphine addiction and withdrawal, nicotine addiction and withdrawal are real. With prolonged use of ALL of these drugs, tachyphylaxis will occur, users will need stronger and stronger doses to feel the same effects as before. For ALL of these drugs, if you have used a large amount of them and for a long period of time then when you stop using them whether by choice or chance, your body will react poorly. In fact, it will fucking suck. Why are there ads on tv for quitting nicotine? Why are there clinics for recovering morphine addicts? We already know that drugs that are absorbed into the body in a high enough dosage and for a long enough time will create dependency. Why not topical steroids? They’re strong enough to absorb into your skin and suppress inflammation, hence it stands to reason that with prolonged, even proper usage, your skin will become dependent on it to suppress that inflammation.

Also I think Red Skin Syndrome is a shitty name. People going through nicotine withdrawal don’t call it Irritable Twitchy Cravings Syndrome. It’s quitting nicotine. Exactly what topical steroid withdrawal is. Quitting topical steroids.

The theory that your skin will recover on its own is controversial, yes. I want it to be true, but that doesn’t mean it is. However, the side effects of long term topical steroid usage are well documented, and it’s obvious that I have them. And yes, I know for sure - my mum is radiologist, my uncle is a GP, my aunt is a pharmacist, another uncle is a surgeon. I have no shortage of medical support. Yet, the appearance of my skin puzzled them, and none of them believed me when I first said I thought my skin was withdrawing from topical steroids. But as the weeks went on my skin got worse, to the point where I couldn’t sleep, go to work or even leave the house. At the point where I couldn’t take any more time off work, I gave up my new theory, hated myself for even believing it and bought some hydrocortisone. Within 3 hours my skin wasn’t red anymore, within 12 it was dry and flaking off, and within two days it was almost ‘normal’. My eczema had never been cleared in two days by topical steroids before, but in complete relief, I stopped using the steroid as I always had. Bam, it all came straight back within a day.

THAT is how I know topical steroid withdrawal is real. It behaves exactly like a drug addiction. The effects on my skin are temporary and insatiable. What I was experiencing was no longer eczema. Firstly eczema doesn’t burn without you scratching it first, topical steroid withdrawal burns all the time. Secondly I had no lesions, something that had been a symptom of my eczema my whole life. Thirdly my burning skin blanched when pressed. That means the burning red colour originated from the inflamed blood vessels (no longer steroid suppressed) under my skin, not from my scratching and irritating the uppermost layer of skin into an eczema rash, which doesn’t blanch.

Why I post about it online is because I want other suffers of eczema to know to be even more careful with topical steroids than they already are. I see people with mild eczema using way too much, and too potent types of steroids on their skin. I see parents smothering their months old child with class III steroids and that scares me. If you can live without it, try to. If you must use it, keep your dosage low and your usage time low, then look for alternative means of control.

I still do believe that stopping topical steroids will allow my skin to eventually heal. Why? Because I actually DID grow out of eczema at 15. And I had 5+ years of glorious happy skin without steroids. Whether stress or whatever brought it back out, I went for the easy fix and slathered on the steroids, starting a 4 year merry go round that I now cannot get off. I literally cannot stop using the steroids right now because I can’t take time off work right now for the amount of time I think it would take for my skin to gain back some normality. I’m working on lowering my dose and frequency, and hoping that it will help when I eventually stop completely, but who knows, I’ll find out later.

If the terrible side effects of topical steroids didn’t make me want to quit, then the mere thought of being addicted to them sure as hell makes me want to quit. I do not want to be dependant on a drug for any part of my normal day to day functioning.

While I’m replying I want to say thank you for replying to me thoughtfully. I appreciate what you bring to the eczema tag that people should use their brains, do research and not just go to their doctor and slather on whatever they give them. I agree with you that eczema can be controlled, but all I’m saying is that what I’m going through is no longer eczema.

Me, 5 seconds into what I’d decided would be 1 minutes worth of divebombers: why did I do this to myself. 

Struggling. I had three really good days last week but that all went down the drain and I’m back to red, burning skin. I was so optimistic that I booked in my with hairdresser for a cut and colour, thinking I’d dye my hair blue/black. Will call her tomorrow and cancel that.

Anyone who says “just don’t scratch it” as a solution to eczema/tsw - go fuck yourself. Let’s compare it to say, me taking a pin and jabbing you randomly in quick succession and you try to resist whatever your natural reaction is mm? 

Read on for TMI. 

Read More

My eczema is better. It’s still red and dry but it’s not weeping or crusting up anymore, which is an improvement on last week. Major peeling and flaking however, which makes getting dressed a dilemma. I made the mistake of wearing black today.. as you can see below. Ended up fucking covered in flakes so I won’t be making that mistake tomorrow. My elbows are the worst, probably just because I’m bending them all the time and the heat irritates my skin. Even things like brushing my teeth and drying my hair take too long a time to be able to hold my elbow bent for.

Apart from that my main patches are better, less severe. But the little dry patches are spreading all over my body, some on my legs, my shoulders, my face. It’s annoying when everything I’m doing is to try and keep my skin moisturised. It’s been one month without steroids and I think I’ve got a long way to go to have normal skin without them.

I’ve been taking an antihistamine when I really can’t stand the itching anymore, mostly before bed. But I don’t want to take them regularly either because you can also experience withdrawal from long term use of antihistamines, especially Zyrtec. 

An old strategy I’ve used is that I scratch less when my nails are painted, because I don’t want to ruin my manicure haha, so my nails have been constantly painted lately.

Work is still boring me. I end up reading the news online at least ten times a day so at least I’m up to date on current affairs. My company seems to be struggling to pull work in lately and I’m just working on the same stagnant shit. I should be doing more personal design work but I’m feeling unmotivated.

I had dinner with my ex last night and it was good. It’s nice to see him happy and busy. I think he’ll find someone new before me, which is both sobering and slightly sad for me, but he is more outgoing and gets along with more people than me.

Mm. My life in a nutshell. 

Apologies for doing zero design blogging. Four day long weekend for Easter and I spent most of it at home battling my skin. My elbow eczema and my shoulder eczema is slowly joining up in the middle. Fucks sake.

It’s so tempting to think I could just ask mum to write me a prescription for some cortisone and I could be rid of this in days, but I just can’t stand being reliant on them anymore. I’ve been googling the word eczema and every possible treatment I’ve ever heard of. Trawling through blogs of other people going through topical steroid withdrawal for tips. I’ve been relying on steroids on and off to have “normal” skin my whole life.. that’s twenty three years worth of damage. Who knows how long it’ll take for my skin to get back to normal.

My neck is slowly getting better, but my legs are so bad I’m not even willing to put a photo up. I’ve been wearing cotton gloves to sleep but I can still scratch myself to a bloody pulp with them on. I read a blog where a woman wore boxing gloves to sleep.. maybe it’s worth a try. I’m pretty fucking desperate right now.

I know I don’t have it that bad. My hands are normal after three years of swollen flaking sausages for fingers. At least my eczema is in patches and not all over my body. At least my face is spared, just minor flaking and scarring on my eyelids. I scroll through the eczema tag on here and see everyone’s photos and I just want to hug you all because I know how painful it is to just have a shower, I know what it feels like to wake up in the middle of the night just wanting to rip your skin off. I know what it’s like not wanting to leave the house because you look hideous and you leave a trail of fucking flaking skin everywhere.

I guess I’m trying to talk myself into not giving up on this steroid withdrawal phase. I hope there will be a day I have beautiful smooth skin but without the steroids.

I don’t have anything insightful to say, I just want to ramble.

The last few weeks have strange. I broke up with my boyfriend of two years. To his credit he took it well, he knew it was on the horizon sometime so it wasn’t too much of a shock. Deep down I think he agrees with me that we just weren’t long term material. We’ve still been talking and I’m getting used to not calling him my boyfriend anymore, but it’s weird and “my friend” isn’t adequate.

My wardrobe needs a major overhaul, half my jeans have holes in them and my three blazers that I wear continuously at work at getting pilled and gross. I haven’t bought any staple wardrobe pieces for a few years so.. I guess I can justify spending at least one pay check improving my wardrobe. Then I need to clean out what I have hidden in my closet and sell all of it on eBay.

I’m a little frustrated at how inconsequential everything I’m doing at work is. I know I shouldn’t complain and I should just work really hard to make every design as amazing as I can but honestly.. how amazing can a school crest on a navy blue background be? Unadventurous clients are frustrating.

My skin is being a bitch still. I’ve been hanging out on the eczema tag on Tumblr more than ever. It makes me feel less alone when my skin is inflamed and hating me. I need to eat better and sleep better.

Yeah, as I said, a selfish post.

Some days I just want to rip my skin off. The back of my thighs, the back of my shoulders, my elbows, my neck, my eyelids. I take an antihistamine and grab an ice pack and try to lie still and not think about the burning, livid mess that is my skin. I lie in the bath with a cup of oatmeal in a stocking, endlessly squeezing the oatmeal dregs over my skin. I slather on moisturisers - Aveeno, Mario Badescu, Avene’s Cicalfate cream, pure jojoba oil - and on a really bad day? Plain petroleum jelly. I don’t use cortisone or hydracorisone anymore. I’m trying to cut back on Elidel because it doesn’t do anything for me in the long term and god knows how many immunosuppresants I’m absorbing from it. Some days at work my neck is just like one giant fucking rash, and I desperately try to keep my hands on the keyboard to stop myself from raking my fingernails down it over and over. I empty my mug and hold the cold ceramic against the curve of my neck until it’s warm and I have to put it down to let it get cold again. I try to just touch my skin gently to soothe the itch and think ‘10 more seconds and I’ll stop’, ‘5 seconds’, ‘5 more seconds’. 

I know I don’t have it that bad. At least my rashes come and go, some people have days like this every single day. But christ sometimes I can’t remember a day or night when the majority of my time wasn’t spent just trying to read, or drive, or sleep, or anything without clawing my neck to a shredded mess.

Leaving the house to take my dog for a walk, my Asian neighbours happen to be gardening, I say hi, how are you in Cantonese. As I walk away, an elderly Aussie man walks past with his jack russell and maltese, which are yipping their heads off at us, he looks at me condescendingly and says “You hold on” (mimes holding on) “that dog” (points) “your dog, very strong”. 

Pretty insulted, I put on a more Aussie accent and reply “Yeah I know mate, I’ve had him for 10 years.” Walk away patronizing old man, and take your barking rats with you.

We’re not close anymore. We barely talk. You only come to me when you need something. But you hear some whisperings of gossip about me and you suddenly message me with some poor excuse of an observation with hopes I’ll confide in you? lol I’m not gracing that with a reply. Not sorry.