I’m addicted. There, I said it. I’m an addict and it’s all my fault.
Well I didn’t know that the drugs I was prescribed would cause any long term problems at the time but it would seem topical steroids are a ticking time bomb.
At first the steroids worked but over time higher and higher doses were prescribed to keep the eczema at bay. It took years to understand the various triggers which were causing my problems, rather than just treating the obvious inflammation which is just a short term measure at best.
Topical steroids were invented way back in 1950 and I guess no one then knew what the long term effects might be. It feels like no one really cares in an NHS system where doctors prescribe anti-depressants, steroids and antibiotics far too frequently. There is so little diagnostic analysis into what might be causing a problem. Many of these man-made drugs are proving to create more problems than they solved, yet still they are being prescribed to yet more patients.
I first used steroids when I was a child. They worked at first. Hydrocortisone helped to heal patches on the backs of my legs and arms. But gradually I needed stronger steroids. The eczema did improve a little but in my twenties it came back with a vengeance and needed ever stronger steroids.
I also need an asthma preventative inhaler and another for instant relief. Yet more steroids and I cannot live without these. I inhale steroids every day to control my asthma. These drugs are life changing because without them I’d be so wheezy all the time and maybe I wouldn’t be here today. I’ve had a lot of hospital admissions with severe asthma and needed medical intervention.
Addicted to steroids
So I’m addicted and not just to one type or steroid; there’s one for the asthma and one for the eczema.
In the past I have been reduced to begging for more. For my next fix. Now Elocon, my current steroid drug of choice, is on my repeat prescription so I can make sure I have enough and never run out. My doctor trusts me, I don’t over use it and he has never refused me but I hate needing this stuff so much. I often find myself in denial and with a very bad flare-up, sleepless for weeks and itching like mad before I give in and get another fix. It works almost instantly.
If I can’t get any quick enough, if I run out, my skin inflames all over, even my feet. I become itchy like a million ants are crawling all over me, experience stabbing sharp pains, my temperature rises and I shake and sweat. It’s nasty.
Cold turkey from this stuff is something else, not that I’ve been through any other kind. I’ve never smoked and don’t have an addictive personality; my body however is hooked in a big way on topical steroids. It doesn’t pass in weeks, months but sometimes years for those who have managed to succeed with the topical steroid withdrawal.
I cannot live without steroids, at least not for long. You see the itch is so bad, the intense pain is unbearable, I just can’t live without the relief the steroids have brought me. They really are a miracle cure, but you know what? It’s never enough. It never is with addiction. The body craves more, that stronger hit, that something else that will take all the itching urges away and keep the skin smooth and eczema free.
But it’s a lie and it’s a trap. And it’s one of the nastiest and cruelest tricks I’ve even been played.
Because, now thanks to science, doctors and the genetics that gave me eczema I’ve been dealt topical steroid addiction.
My dermatologist refuses to believe this is a problem and tells me to just use steroids when I need to, in moderation and as advised. Just to keep using them. That there is no issue. Nothing to worry about.
So what do I do? The more I read about topical steroid withdrawal the more fear grips me. I cannot go through that alone with no support. I’ve seen some of the stories of people who have survived it with lovely clear normal skin but I’ve also seen the photos of what they’ve been through. I can’t do it. I cannot put myself through that and still work, function, live in normal society. I know what it’s like being in that much pain for a day, for a week, but for months and months, for years? Because that is how long it can take. Can I put myself through that?
But there is a lifeline. Check out ITSAN, International Topical Steroid Addiction Network. This condition is also referred to as Red Skin Syndrome because the skin glows the harshest, most swollen, most horrendous burnt red colour during the withdrawal process.
Just look at some of the photos in the gallery from people who have been through withdrawal. They are so awful and painful to look at. How could I go to work looking like that? Could I even get my job done looking like that?
I’m worried about topical steroid withdrawal
I’ve been reading about quite a few people who have stopped using steroids. I need stronger steroids. I need them more often. I can’t find anything else that gives me that high.
But it’s a false solution. Because for me, now it’s too late.
And if you think going cold turkey from alcohol and drugs looks bad, take a look at these blogs from brave people going through topical steroid withdrawal right now. Some of them are hospitalised, some are losing their hair, most of them are 1 year or even 18 months into the process and it can take up to 24 months to get through withdrawal to clear, healed steroid free skin.
- Cara Ward’s blog is packed with information. She has healed from TSW.
- Juliana’s Topical Steroid withdrawal journey.
- Topical Steroid Withdrawal Blogspot
- The Thick Skin Topical Steroid Withdrawal story
- Stopping topical steroids blogspot
The body is so completely addicted that it will create worse symptoms than you EVER had before. Instead of finding the source and triggers of eczema, we have created a monster condition.
But my doctor won’t talk about this with me. My dermatologist doesn’t think I have a problem, he says I just have eczema. Well yes, I do but it’s mutated. It’s morphed into this whole body, mind bubbling, skin altering, fizzing, screaming, burning hell if I don’t use steroids.
Protopic has transformed my facial eczema, the redness that covered my face in a kind of butterfly pattern like the worst crusty, dry, scaly eczema you could ever imagine. But is this just another addictive drug? A plaster to cover up a very nasty problem which one day I will have to address.
At this point in my life I just cannot consider going through the withdrawal. But I am now consciously monitoring my use and trying to slowly, slowly reduce my applications. I’m not sure whether this will work but going cold turkey is nasty.
I’m not sure I’m brave enough. I would love to hear from survivors who have done this before. How did you cope? Did you continue to work?
I feel for you. I know all about the lung issues. I could talk for hours on this but key points here:
“They really are a miracle cure,”. No hon, they are not. They don’t cure anything. They hide a symptom.
“my doctor won’t talk about this with me. My dermatologist doesn’t “. HAHA They don’t get those nice kick-backs and nice little incentives from big pharma unless you’re prescribed. (In the US now, we have gads of people developing shingles. Oddly, they were a
rarity until the drug company invented a vaccine. Once they introduced it and slapped the ads on tv; gave the docs the incentive…everyone (not me!) started getting this shot. Once one has been injected, they are now carriers for a bit. So those coming in contact, in turn, come down with this same affliction and now they run to get the shot. And the cycle continues. Of course, they are the serious pain drugs and some for itching as well. This is a trifecta for the prescribing doctor. Yes, it is cruel. We are being played with like a bunch of rats in a lab at the expense of a few. The medical system is an atrocity. I do not blindly attach any worth to anyone in the profession. The US is shamelessly horrible! I see pharma as the big machine and us humans as fodder to turn the cogs.
“work, function, live in normal society” Just for perspective..are they all really normal? What is normal? It sucks because the skin affliction is visible but who knows what they really have going on inside.
I had a lab coat tell me not long ago that my time should be up now. With no concern for dropping that bomb in my lap; he could have just as well been offering me a cup of coffee. I informed him that I was told that 10 years earlier and I new better then and I know better now. When one of them can live in my body; they can tell me how the hell I feel.
It’s all a racket. Not just the coats. Many of the ‘health food’ (hahaha); er, I mean supplement stores are owned by the same docs with a prescription pad. This way, they get your money on both ends. Beware these healthy foods. NO pre-packaged food is good for you. It’s just marketing. Many of these companies are owned by the big 4. So you’ll find Kraft, Nestle (what an atrocious company!), etc. are actually the owners of many of these fancy,gluten free, organic, etc. etc. smaller subsidiaries.
I’m thankful for my (dis)-ease. It has kept me alive! If not for all I know now, I would’ve been dead for swimming in the mainstream. A salmon, I am! I’ve been swimming upstream since I was born and I’m not stopping now.
I’ve gone on far too long. But I want to suggest to you some looking into my most important word. MYCOTOXINS. Get them out of your gut/body and you might just fight that steroid need subsiding on it’s own and without the side effects.
Thanks Heath. Very thoughtful comment as always. Agreed re big pharma. Very worrying. I try to eat as little processed food as possible as it just doesn’t agree with me at all. For those that don’t know and I had to google it, Mcotoxins are a group of naturally occurring chemicals produced by certain moulds. They can grow on a variety of different crops and foodstuffs including cereals, nuts, spices, dried fruits, apple juice and coffee, often under warm and humid conditions.
Hi Ruth
Really sorry to hear of your suffering. Have you ever been to the best and on the edge dermatology school, St Johns, based alongside Guys & St Thomas’?
If the problem is ongoing despite well adhered to interventions by GP and local dermatologist I think this would be the best bet. You could discuss your thoughts, fears and experience with them.
Best wishes
Andrew
Ah well that is an old photo of me, I should have qualified this. The protopic is keeping my syptoms at bay but the rest of my body flares up if I don’t get my steroid fix. I might try to get a referral to them to see if they would be able to advise me on whether I should embark on TSW and whether they would support me through it should I need help. It’s not something I relish.
Ps No company is giving kick backs to UK doctors these days. Steroid creams and inhalers are mainly generic anyway so no point in a kick back. This is so tightened up in the UK. It would take an idiot to try to take cash/etc… In fact it is more likely that a pharma company would report such behaviour to the GMC to score brownie points.
Andrew, I’m in US. Steroids inhalers, especially Symbicort are $400 each. There is no generic.
Dear Health,
Oh dear, that is then a major problem, I can see that. The socialised health care system does have advantages especially for the poor and middle income earners. It also has its problems.
I am guessing that Obamacare was a huge step but not one that has solved all of the negative issues. If you got health travel insurance and came to the UK and required Symbicort it would cost in the region of $100 or less. If you had generic…much less.
I wish you the very best indeed. I love spending time in the USA.
Andrew
Thanks for qualifying this Andrew and Heath. The difference between UK and US are interesting. I think I do still prefer our NHS system, warts and all.
Here is something I want you to consider. There is no such thing as topical steroid addiction. A couple doctors threw this out there when then realized that steroids were making the situation worse but this is not happening because steroids are the problem. It is happening because steroids reduce the inflammation and the infection runs rampant and turns the skin red. How do I know this? I see people every single day leaving TSW groups and trying Dr. Aron’s method and his method cures RSS and they only have eczema left. This could not be happening if these people were addicted.
Your article is wonderful and you seem very sincere. I just want you to consider this because like most, you will try TSW for the next few years and when you realize that there is no end to what you are going through, you will want to look up Dr. Aron. He will cure your red skin in a matter of weeks. I wish you much love and healing in your journey!
Thanks for sharing Cheryl… it does sound like an amazing cure. And having read all about TSW I am not sure I can put myself through that. I’ll look into this. Thanks again.
Not true, my TSW ended after 5 1/2 years, all eczema gone and no problems
Hi Cheryl, since writing this I did cut out the topical steroids, and now am 1 year TSW free. My skin is slowly slowly getting a bit better all the time with a few set backs along the way but I can see an end. 5.5 years is a long time though.. hope it doesn’t take me that long… what a nightmare battle. These steroids should not be being prescirbed as they are..
Sadly, Ruth – no steroids – not just no topical ones – are an answer. They re just an amazingly effective sticking plaster which genuinely do, when first used anyhow, control horribly painful, debilitating and disfiguring symptoms. And of course, because they are so effective at controlling symptoms, they are very hard to ‘give up’, even if not ‘addictive’ in the commonly accepted sense of the term.
However, my understanding is that, with the possible exception of asthma inhalers, they do also become less effective with long term regular use so I do think that your little by little attempts to reduce the amount you use has to be the sensible way to go. The benefit of reducing daily use is that you will still have them there – and effective – for emergency flare ups – if that is any help or consolation…….
Good luck – may the force be with you……. Meanwhile, worms?…….
Hi Michelle. Worms to you too! I’m so tempted by the little wrigglies but it’s the cost that puts me off. It’s at the back of mind, wriggling around there. I’m really pretty good at the moment with a very small amount of steroid on tiny bits and I’m slowly cutting back rather than just stopping which is what I keep trying to do. Slowly, slowly I’ll get there. TSW just looks barbaric and I really don’t think I’ve got the strength to get through it.
Give Dr. Aron a try. You won’t have to worry about RSS again. I suffered for 42 years and this has worked amazingly well right from the start! Lots of before and afters in this very large Facebook group. See what you think!
https://www.facebook.com/groups/draron
Hi Ruth
Such an interesting topic. I have spoken to a few people who have gone through TSW and it looks like nothing short of horrendous. Do you follow Jenny Stirling’s blog http://i-have-eczema.blogspot.co.uk/ – she has really been through the mill with her TSW but she is clear now and the difference really is astounding. The pharma industry disgusts me in so many ways, I have been doing a research project on it recently and the things I am discovering really are vile. It is one of the most wealthy and profitable industries in the world, as we all know, but their success is based on illness and disease being a highly profitable business plan…there is no profit in cure 🙁 There is also a lady I used to be in touch with a while ago who has been through TSW and has set up a new support group to help with exactly this. She is campaigning to raise awareness in the medical profession of steroid addiction and the awful side effects of withdrawal eczemabeacon.org/ – she used to be called Miss Kitty Fantastico but I think she uses another name now as far as I can see. I am so sorry you are struggling with this Ruth, it truly is awful but I think there is hope if you can bear to take it on. If there is anyway I can help, please get in touch. Happy to provide you with bucket loads of Skin Salvation free to help you get through it. I suspect it wouldn’t be much consolation when the going is really tough but if it would be any help at all, please let me know. i would love to help. Take care, Weze x
I did it. I cut them out, On year in and going strong. Not sure I saw these comments… had a tough few years getting myself ready to go cold turkey. Worth all the pain and really feel I’m coming out the other side.
Hi Ruth
That’s great to hear that you’re now steroid free.
Are you still using protopic?
Best wishes
Pam
Hi Pam, no I cut out Protopic in April last year. Still having face flares and plan to blog about this soon. Think I’m healing slowly and not going back to using these products. They are a mask that falls into such awful skin when it’s removed. This can’t be good. Working on finding the real eczema triggers and healing my skin from within.
Ruth,
Of course I know you cannot give medical advice. However, just want you to know your site is so informative.
I just don’t know what to do at this point because I don’t know if it is an allergy to Topical Corisone or TSW..I’ve been to two doctors today…an allergist and a dermatologist (Derm seems to know what she is talking about.)
I might have an allergy to hydrocortisone ointment 2.5% because this is the first time I took it and opthamalogist said I had dermititis on my eyelid. He gave me this prescription… I put it thereon eyelids…..and prescription was for 14 days…I only took it for 8 days as I felt I was allergic to it. So I stopped it and when I did I got a red face, itching, skin that looked 10 years older, and eye lids that were swollen and under eyes swollen. So I got came upon the ITSAN facebook site (in fact I posted Dr. Rapaport’s videos to help people on that site.) The weird thing is I had some of the same TSW symptoms and for only using it for 8 days.
So allergist today said it’s not that TSW because I took it for such a short time…Derm seemed to think the same.
So is this possible this is just an allergic reaction? I stopped taking it last Thursday. It is Monday and my face is still red and skin is pulled.
So what I’m saying is I don’t know if this is just an allergy to this Hydrocortisone or a preservative ..i or is it TSW after only 8 days use.
Went to four derms like a madwoman..they all say not TSW
One derm gave me no topical steriod but oral prednisone
Tapering off each day for 14 days. He does not think it is TSW.
So wondering if allergy to topical ointment is the same as TWS? Wondering if allergy I will have a rebound after this predizone sub is over.
I’m 70…the idea of doing a TSW at this point in my life is not for me.
Thanks so much.
Lucy
If you’ve only used steroids that one time I’d say it’s definitely NOT TSW but it’s still horrible none the less. You could be sensitive to any of the ingredients in the steroid cream and it’s hard to work out which. I hope it heals up soon. And hopefully you will not get a recurrence. Keep me posted. TSW is more for those who have used for long periods.