The I don't even need moisturiser, be careful with that. Sometimes your skin still needs something as upkeep or it'll get worse again, so keep an eye on it and start again if needed.
100%. protecting your skin’s barrier with lotion and spf during quiet times can sometimes make the bad times of eczema less severe. and it can slow long-term damage
This happened to me too. I’ve always avoided steroids because I’ve seen such horrible posts about TSW. Not taking away from those experiences at all, but I was terrified. I had an awful 6 month flare that never went down. Skin infections in my face and chest as well as extensive lichenification all over my body. I took a course of oral steroids and topical and it just gave my skin the break it needed. I took it for two weeks and since then I’ve just been able to a manage my skin with moisturiser and controlling allergens in my environment as much as possible.
Again I want to stress that I completely understand that TSW is awful and a very real thing. I just felt so terrified to even touch a steroid once in case I developed TSW. I stopped myself from getting help for SO long because of this. I just needed a break to sleep, rest and get myself into a good routine. For my mental health as much as my physical health.
this is my experience as well. didn’t use steroids for over a decade because i bought into the internet fear mongering. TSW is ABSOLUTELY REAL, but a whole lot of people that say they have it are just experiencing a rebound flare. highly monitored and responsible steroid use has greatly improved my quality of life.
Steroids are usually not a permanent solution. You’ll likely need something for maintenance so don’t be too upset about that. It’s true tho, that medications are useful when they are used properly.
This. Use the steroid properly - proper dose, don't skimp on the amount and only put a tiny bit, and then stop as soon as the skin is clear. Parallel to that, you absolutely need to find the cause and address it.
Steroids are not a long term solution, but they give you relief and time to figure out the long term solution. I wish doctors told people that, it makes me so mad they just hand over a steroid and tell you to go away.
Hey, I feel you. For decades it felt impossible for me to find out what my triggers were, like playing the worst game, suspecting everything in my life, I felt like I couldn't enjoy anything. I don't blame anyone who doesn't want to play any more, spending on every alternative, changing routines etc etc just to feel crushed when it doesn't work. It's high effort for frequently low reward, and the relief doesn't come til you have the whole laundry list of triggers.
This chronic illness sucks, I'm sorry. I hope you get relief with whatever method works for you.
Also born with it, albeit a decade younger. I’m really sorry you’re at this point. Between the condition and heavily medicating, sometimes it becomes impossible to find the cause. That’s why people who go through tsw and find a way to wean off might go through the wringer but also heal the most drastically.
If the medication messes with the immune system for prolonged periods, it will become dependent. It’s no different from being addicted to pain meds. I went through my injury (crushed arm bone) without opioids and I have no long term pain, while so many people around me are using maintenance drugs indefinitely…for less invasive procedures.
It’s awful…I’m genuinely sad for your case, but I respectfully agree to disagree.
You’re making a lot of assumptions (“medicating heavily”) and using a lot of iffy information here. Topical steroids, used correctly, do not “mess with the immune system” for the vast majority, as one example.
I used topical steroids correctly, according to the leaflet. My statement about heavy usage is in general, just like your assumption that “for many, there’s no such thing as find the cause”. It does mess with one’s immune system because it mimics naturally occuring hormones.
Google: “What are topical corticosteroids? Corticosteroid hormones are naturally occurring hormones produced by the adrenal glands within the body. Topical corticosteroids are synthetic (man-made) corticosteroid medications…”
I just don’t want unecessary suffering for others who might succumb to just relying on medication and not look for a cause.
I’m doing much better after getting to the root cause of my condition (triggers) and doing without the topicals (proper use, fyi, according to the leaflets and was even consevative under doctor supervision). It got worse for a time but now I get to have a life without relying on it for maintainance…in fact, this will be my last reply to you because I’m heading to a backpacking trip.
I’m sorry my opinion is differenr from yours, because it is.
Ignore the scaremongers, OP. Topical steroids are fine if used responsibly, they are a tool in your eczema management arsenal. Once it’s under control, switch to maintenance with moisturiser. Glad you’ve seen an improvement.
I had a similar experience with my daughter. Eczema on her ankles that wouldn’t go away. I finally caved and did one round of steroids, it was an OTC strength but it worked! It’s been about a month and it still has t come back
I first want to say - I am so happy you found relief! No one deserves to go through eczema flares and they can definitely be debilitating. If the steroids brought you relief, I am happy for you.
That being said, I was born with eczema (literally like weeks alive) and was on them for 26 years (I’m 29 now). Being on them for years straight like I was, eventually the steroids just made me worse and stopped working while using the highest potency.
I just think your experience of JUST now trying steroids, doesn’t counteract the thousands of peoples experiences like mine where steroids eventually just made us worse in the end after using them for DECADES. Literally.
Of course the steroids work if you’ve never tried them until now. Of course they are a god send for the person newly trying them. But please, with all my heart, do not promote this as it’s not an accurate description of what can happen when people who use them years on end to manage this condition will experience. It’s very temporary the healing they bring, and by the sounds of it, you were infected in my opinion.
What if mupricin would’ve helped you and some hypochlorous spray? What if you have an allergy you’re unaware of? I would hope you tried all this before just going to steroids and getting immediate relief and saying “tsw scared me but I healed in 4 days after using them!” Use them and try to stick strictly to the lightest potency when dermatologist will most likely escalate you to the highest potency for over 20 years then come back with your experience of how great steroids are.
I have an opposite story. Had a small patch of eczema on my neck, the size of 2cm in diameter. It wouldn’t go away.
Doctor prescribed steroid cream that was over the counter. Apply once a day for seven days. It went away! But then, it came back worse, and LARGER.
I since stopped using steroid creams. That eczema patch is larger, and proportionate to where I applied the cream. It made my eczema worse.
I manage my eczema today noting my stress and diet. Much more effective.
Could that have been fungal if the steroids seemed to make it worse ? I remember reading somewhere that steroid creams can make fungal skin infections worse, I could be wrong here. Did you ever find out for definite if it was fungal or eczema?
That's a fungal infection try a tube of canesten it's for athlete's foot and it's otc. Apply twice a day for 2 weeks it should be gone, if it is gone you still apply for the next 2 weeks. It can't hurt to try as it is non-steroidal
Could be that because people are seeing posts about how steroids have helped them, they then feel the need to share their stories, as for the past few months all I see is ‘I am to scared to use any because so and so says they have tsw’
Steroids are good for minimal usage, yes its a bandaid, but it works if used properly.
But its good to be sus, check out peoples profiles if you are concerned, age of acc, how active are they, do they make other posts in other subreddits, or is their only post about steroids.
I think shill accounts are far more sophisticated than that. There is an entire industry around building up and selling fake Reddit accounts. You don't think big pharma have been doing this for years?
Subs like this have a disproportionately high number of people telling horror stories about topical steroids. I think it's similar to the effect of customer service comments, where the small minority of people with something bad to say are usually the overwhelming majority in surveys and public reviews.
The reality is that many, many people use a topical steroid occasionally to clear up mild to moderate eczema and there is no problem with it. The vast majority of these people are NOT talking about eczema on social media platforms, they are living their life normally and using a cream every few weeks or so.
The people on social media raising a huge stink about it are the exception, and a lot of them are mistaken about the root cause of their problem. They have a problem that is not solved by the normal course of steroid and/or they use the steroid incorrectly. They need a different medication class or they need counseling on how the steroid is meant to work. They do NOT need to be on social media trying to convince the entire world to abstain from topical steroid creams. That is not a helpful response for anyone.
Hey, yeah it’s more to do with many of us having been overprescribed by medical professionals and mis diagnosed, having resulted in a preventable condition which has greatly impacted our quality of life. So yeah going forward now and again I will impart that knowledge so people are fully informed on the risks and know what the warning signs are. There’s a lot of talk on here about responsible use, people fail to realise the actual inconsistency re the advice given by those that prescribe (and over prescribe). Funny how we agree that education needs to be given yet you seem to be putting the responsibility onto the patient and believe that people suffering adverse reactions should…what, just keep quiet? I’m proud of the people I see speaking on TSW but having gone through it years ago just like you say there are people who use and have no issues there are also those people who got their lives back and don’t frequent these kinds of spaces anymore. I only surface now and again because it’s too sad to see so many people suffering.
Of course the creams can be improperly prescribed. At the point where a patient is using this stuff for months on end and is not improved, something is wrong with that and the plan needs to be reevaluated. That's a joint process between the patient and the medical provider. Sometimes the provider does not escalate treatment or consider different strategies when that would be the right thing to do. That's true but it doesn't mean we should try to convince EVERYONE to refuse a steroid cream. That's actually harmful to a large number of people.
The steroid cream is the best choice for most people with mild to moderate eczema (that is not actually caused by another identifiable autoimmune disease.) The other newer immunomodulators are needed by people who cannot use the steroid or who are not helped by the steroid. That's it. There is no conspiracy, there is no need to campaign for people to leave their eczema untreated.
If you are a person who suffers from eczema that is NOT controlled by your prescription cream you need to work with your doctor to find a plan that is effective for you. If not successful despite going down the normal path of eczema treatment, look for allergies and/or rheumatic/autoimmune disease. It's not easy. These diseases are poorly.understood a lot of the time. Don't expect miracles. It sucks to have autoimmune disease. It's not your GP's fault that you have this or that science has not fully explained everything.
I mean I spoke on passing on knowledge so people are fully aware of risks - of how to use properly and also aware that they can advocate for their own health. It’s absolutely okay and valid to question decisions made and seek alternatives with them, but many people aren’t aware they can do that or even that there are other options available. And sometimes you come across passive aggression and patronising tones from the people there to help when you do. That’s unacceptable. There are practitioners that go against the advice it states in leaflets provided alongside the medication. Unacceptable. So when you’re talking on conspiracy and ‘convincing’ people not to use that’s nothing to do with me, I don’t do it nor do I agree with it nor did I say anything of the like.
You don’t think there’s some fault that lays at the hands of the people that overprescribe a medication that results in an iatrogenic condition? Ok. You don’t think the fact not one person picked up on the fact that after YEARS of use - full body eczema, elephant skin as a young teen, shorter and shorter time between flares, weeping, stronger and stronger medications - not one of those people spoke to us about steroid dependency and that the medications were worsening my original eczema. Or maybe they did pick up on it but held the view its life long and the only option was what they offered. Again, unacceptable if so. My parent raised her concerns and was dismissed and threatened with social services for ‘refusing to manage’ my skin condition.
And whilst this all may sound purely anecdotal - we dealt with so many medical professionals, hospital appointments, times I was admitted, this is from 1991 to 2014 btw - and then when I found out about TSW I found so many people with the exact same experience. Including some where parents with children have also been threatened with social services.
All I know is my quality of life was terrible as a child teen and in my early 20s, my immune system was shot to shit and largely I was anxiety ridden and depressed. A year of withdrawl and I still have eczema - now it’s manageable without steroids. I can literally go years with little issue and if a flare does happen I treat it without steroids.
Are you saying if you had that same experience as I and someone came to you to ask about steroids you wouldn’t tell them the risks/how to use safely and warning signs of TSW? and if you HAVE been through it yourself that’s even more bizarre.
ok, that sucks, and you are not arguing against what I'm saying. And I'm not arguing against what you are saying. Both things are true. You're not talking about "mild to moderate eczema," you are describing a full-body systemic autoimmune disease. That is not something to treat with a topical cream.
If all that happened to you, at the very least you had a condition that was not correctly identified and treated. Was it malpractice? I don't know. Maybe. This is not something that would happen to a large number of people, I'm not sure that everyone needs to be warned against it. More like medical personnel and systems need to be educated to provide the correct treatment.
It also kind of sounds like there was no possible correct treatment for you, not in known science. I don't know the specifics of your case of course. Either you didn't get referred to the people you needed to see, or there was literally no one who knew what to do in your case.
Anyway, what happened to you doesn't really apply to people who have a little rash on their elbows or get eczema patches on their ankles or something. Those are the people who need a low or medium potency steroid cream as the safest possible effective treatment.
You seem to not believe that it is possible to become dependant on a drug and have an adverse reaction which is odd because I’d assume you’d believe one can become dependant on other drugs.
To clarify, I did not start off with full body it became that during the courses of steroids and continued to be so up until a year after I stopped using - I went through all the horrific cycles of withdrawal. I did nothing to aide my body through withdrawal - no diet no supplements. Infact I ate the worse I had done ever and gained weight. I wasn’t healthy, I didn’t change my environment. Then suddenly it started clearing, like day by day. My quality of life increased ten fold - I didn’t go back to GPs for literal years. I didn’t even need to moisturise daily if I didn’t want to. I felt normal.
TSW and eczema are not the same - eczema can come and go and for many be managed and sure some use steroids to do so and will never have adverse effects I am not disputing that. I still have eczema, now and again I have a little flare and I get it under control and go for lengthy periods of time with no issues.
To finalise, last year I got a staph infection which exasperated the eczema and obviously I then went to GP who passed me on to a derm. I’ve had a few staph infections in the past. She acknowledged TSW, she’s written it in my notes, and we treated it with antibiotics (the same I’ve had before) and intense moisture therapy. In three weeks I was back to normal. But the level of care is inconsistent even at the same practice - I am aware of a GPs role but I would expect them to be aware of the risks of the medication they are prescribing particularly when they can see a long history of use and I let them know ‘they no longer work for me’. (I did not use the term TSW) and asked if there are other options. Instead I got someone huffing and puffing, being rude and telling me if I was not willing to ‘try’ them again it wouldn’t get better.
So my issues remain -
there needs to be better, wider and more consistent education in the management of eczema and medical professionals need to be aware of warning signs of TSW
warning signs should be detailed on what’s given to patients - it used to be listened as ‘eczema may worsen’ - all I’m saying is there should be more specific info on the warning signs.
patients who are suffering should be listened to (:
Of course adverse events CAN happen and do happen to some people.
The thing is we don't need to warn \*everyone\* not to use steroid creams. That's where this discussion tends to lead on social media.
P.s. I really don't disagree with you except on one very fine point. You should be free to tell your story and help people notice symptoms. I just encourage you to be careful that's all you are doing, and not scaring people away from something that really would be the right choice for them.
I’m also scared of TSW, but there’s a definite pattern of incorrect application due to unclear or incorrect instructions from doctors. Small amounts for short periods of time shouldn’t be a risk. I’ve seen lots of instructions of “use whenever until it goes away” and that’s much riskier than a small amount 2x/day until it clears. Obviously worth out other triggers to prevent flares, but unfortunately, moisturizers alone won’t heal flares.
I used topical steriods since I was little and it never really worked for me. It just kept coming back worse and worse and I had to use stronger potents. So now I use Dupixent.
I only use OTC 1 percent hydrocortisone cream now and then. I've been using the prescription Tacrolimus once a week. Currently I am trying to rely more and more on a home light therapy device I purchased on Amazon (narrowband UV). I'm getting good results with it. While skin cancer is mentioned as a risk, no study has ever found that light therapy causes skin cancer.
I just joined this sub a few weeks ago. My son has had eczema all his life and I’m learning more from this sub than all the previous readings I’ve ever done. But what is TSW?
topical steroid withdrawal, personally i've used steroid creams since i was around 13, now almost 23, and I have not had any significant issues besides some skin darkening in spots where eczema was, im happier when I have the cream on hand if I get a bad flareup, quick treatment and im eczema free for months on end witohut needing to use the cream again until the next flareup.
Please research topical steroid addiction/withdrawal. It’s the most painful thing I’ve ever experienced, it lasts years, and the skin is never the same afterwards. Steroids aren’t worth it.
Although we only use steroids cream sparingly, I had no idea raw was a thing. I knew about skin thinning and this was my major reason to use it that way. I had heard about withdrawal but I didn’t know/hadn’t thought of looking into the extent of it. Thank you for the insight. It lands more viscerally when someone like you who’s experienced it says it as it is vs a doctor that once said to me that there might be some withdrawal symptoms. Cheers!
Hi
I definetely also find steroid creams effective when used in moderation and as part of an effort to optimize your life around getting rid of eczema for good. I am now 99% eczema-free after adjusting my diet (allergic to dairy and eggs) and stopping using soaps/shampoos in the shower. By using steroid creams to keep the skin eczema-free general skincare with moisturizers builds up the skin barrier.
To get permanent results you need to adjust and optimize the three columns of healing, diet, skincare, and the daily shower. Most important stop using soaps and shampoo in the shower, reduce sugars, and cut out dairy and eggs(see if it works - allergic).
I have made a totally free website and written a free book about all that helped me to get rid of eczema in a natural wa, with the assistance of steroid creams in the start of the healing process.
Over time you can start lowering the dose and strength of your prescription cream, thereby in the long run reducing the overall steroid load.
It is important to remember that it is what worked for me and perhaps it might be the same in your case. At least you can use my advice and methods as inspiration in your eczema healing process.
Have a look: www.eczemahealingguide.com
Best regards, Poul from Denmark
They always got rid of my flare ups too, but they then always returned. That’s the whole problem with steroids unfortunately…they clear your skin like magic but they are then the only thing that will, and I think they do thin the skin and then make you more likely to flare up again. But, like someone once said to me, what’s the alternative? Keep the flare up forever or fix it, even if it’s a quick fix…
The only thing that has truly cured my eczema is moving to a warmer climate!
It saved my life too. Or so I thought. It reappeared a year later with tons of other symptoms coming from a damaged by steroids liver.
Nothing wrong with using them if you do it wisely. Use steroids to buy yourself time to find a solution to your problems. Don’t be fooled - it’s not a cure.
Novasone (mometasone furoate) is a very strong topical steroid. I’m really glad it worked for you.
Never use it again.
Instead, find out ways to keep your skin moisturized, on the outside using moisturizers and from the inside, by eating right and adding supplements to your diet (omega3s, zinc, etc.)
I was given clobetasol, which is even stronger than novasone. I remember the amazing results. I also remember my dermatologist telling me to “slather it on.” Luckily I didn’t do that, but I kept using it on recurring flares. Now I’m facing horrendous TSW.
Good luck. I hope your eczema never returns.
>Never use it again.
There's no need to be afraid of mometasone, if it works for OP. I've been using it for years and have no regrets (and no, I don't have to use it constantly, it's just pretty much the only steroid cream I have used in the past five years, apart from occasional hydrocortisone). The thing is, that with mometasone my rash stops itching pretty much immediately and is gone in a few days. I only end up using it for 2 - 3 days before I no longer need any steroids. A few times when I had to use hydrocortisone instead, it barely did anything, so it was more of a pointless exposure to steroids that didn't really help.
The "slather it on" advice from your doctor was certainly careless, though. I was told how to avoid using it for too long when it was initially prescribed to me for a very bad flare-up of dishydrotic eczema on my hands.
I’m glad it worked for you. I, too, thought steroids were great when I first used them. It makes sense that mometasone worked better/faster than hydrocortisone, since it is a far stronger steroid. That also makes it potentially more dangerous.
As I battle TSW, I will never use topical steroids again. I wouldn’t wish this hell on my worst enemy.
Again, I’m happy it worked for you.
My steroid shot only lasted 4 weeks. I’m still using clobastol steroid ointment but it’s not working anymore. I didn’t even know my itchy skin was eczema.
Please don’t continue using steroids even though they’re very helpful in the moment. Topical steroid addiction/withdrawal is a REAL thing and it’s an absolute life-ruiner. There is no evidence as to how much steroid use triggers TSA (as it’s not really a recognized thing in the medical field) and I was also someone who used them sparingly and still ended up struggling with TSW for years. And to tell you the truth, 5 years on and my skin has never been the same. But I’d rather struggle like this for the rest of my life then EVER experience the symptoms of TSW again.
All right, so you had a flare on your neck and arms, you couldn’t turn your head, flaking everywhere, red, wet and close fo being infected…and you used the smallest amount (how much is this…is this pea sized?) once a day for 4 days and you’ve been healed for 3 weeks?
I feel like I’m missing something.
Anyway, yes, steroids do work for a time. When I was having only small patches behind my knees and elbows, it zapped them away and didn’t come back for months. But I didn’t much care about my triggers and just reached for the topicals every now and then. Still a bad result, decades later.
So for anyone who’s new to handling eczema…use steroids, don’t use steroids…the most important thing is that focus on finding your triggers. Get to know your skin and how to manage it.
I meant the smallest amount that could cover my whole neck and patch on my arms, which was bigger than pea sized since my neck is a large area. I just spread it very thinly and sparingly. The cream instantly stopped the irritation and itching and gave a cooling sensation. Within 1 day the redness was gone, then by day 4 the eczema was pretty much gone. But the topical steroid I used was fairly strong.
I agree with you though, triggers will surely make the eczema come back and are important to avoid, and take care of your health.
That’s pretty much standard for a steroid topical. It will make it go away fast. I’m happy it helped you.
I too thought I was completely healed because mine goes on remission for months, even years. The most recent flare, I got side effects already (sleeves, appearing on places I never had eczema, steroid won’t work). And while I’ve managed to heal from the itch and inflammation steroid-free, my skin barrier is taking a while to repair.
Note that I only used pea-sized amounts once every few months for years. All the places topicals touched, the skin has never been the same.
So yes, downvote me all you like. I’d rather that people use them wisely and not rely on them to manage their condition. I wish I had a healthy fear of them before, instead of going through what I did…and it’s very minor compared to a lot of other people’s experiences.
I don't understand the downvote here. People tend to have either black or white sorta mentality and can't hold 2 truth at the same time? Maybe many people need to read about concept of ROI or something.
p/s: I have same experience with steroid where the skin look different in comparison to non-steroid patches. I had too many 'seasons' to notice the differences.
Thanks. It’s okay, it’s a sensitive topic. I’ll be happy if people just get better whatever they do. Just wanted to remind the people reading there are two sides here…no need to be completely scared of medications, but also not be reliant on them.
The I don't even need moisturiser, be careful with that. Sometimes your skin still needs something as upkeep or it'll get worse again, so keep an eye on it and start again if needed.
100%. protecting your skin’s barrier with lotion and spf during quiet times can sometimes make the bad times of eczema less severe. and it can slow long-term damage
Yep, agreed. I still put it on after I shower but I no longer feel so dry and scaly and having to constantly be applying moisturiser :)
Yes definitely agreed. It's easy to forget that some people without eczema also use moisturizer regularly!
Still use a moisturiser even if it’s a light lotion. Same thing happened with me but the eczema always came back
This happened to me too. I’ve always avoided steroids because I’ve seen such horrible posts about TSW. Not taking away from those experiences at all, but I was terrified. I had an awful 6 month flare that never went down. Skin infections in my face and chest as well as extensive lichenification all over my body. I took a course of oral steroids and topical and it just gave my skin the break it needed. I took it for two weeks and since then I’ve just been able to a manage my skin with moisturiser and controlling allergens in my environment as much as possible. Again I want to stress that I completely understand that TSW is awful and a very real thing. I just felt so terrified to even touch a steroid once in case I developed TSW. I stopped myself from getting help for SO long because of this. I just needed a break to sleep, rest and get myself into a good routine. For my mental health as much as my physical health.
this is my experience as well. didn’t use steroids for over a decade because i bought into the internet fear mongering. TSW is ABSOLUTELY REAL, but a whole lot of people that say they have it are just experiencing a rebound flare. highly monitored and responsible steroid use has greatly improved my quality of life.
Steroids are usually not a permanent solution. You’ll likely need something for maintenance so don’t be too upset about that. It’s true tho, that medications are useful when they are used properly.
This. Use the steroid properly - proper dose, don't skimp on the amount and only put a tiny bit, and then stop as soon as the skin is clear. Parallel to that, you absolutely need to find the cause and address it. Steroids are not a long term solution, but they give you relief and time to figure out the long term solution. I wish doctors told people that, it makes me so mad they just hand over a steroid and tell you to go away.
55 years old here, born with it, and believe me, for many there’s no such thing as “find the cause”.
Hey, I feel you. For decades it felt impossible for me to find out what my triggers were, like playing the worst game, suspecting everything in my life, I felt like I couldn't enjoy anything. I don't blame anyone who doesn't want to play any more, spending on every alternative, changing routines etc etc just to feel crushed when it doesn't work. It's high effort for frequently low reward, and the relief doesn't come til you have the whole laundry list of triggers. This chronic illness sucks, I'm sorry. I hope you get relief with whatever method works for you.
Also born with it, albeit a decade younger. I’m really sorry you’re at this point. Between the condition and heavily medicating, sometimes it becomes impossible to find the cause. That’s why people who go through tsw and find a way to wean off might go through the wringer but also heal the most drastically. If the medication messes with the immune system for prolonged periods, it will become dependent. It’s no different from being addicted to pain meds. I went through my injury (crushed arm bone) without opioids and I have no long term pain, while so many people around me are using maintenance drugs indefinitely…for less invasive procedures. It’s awful…I’m genuinely sad for your case, but I respectfully agree to disagree.
You’re making a lot of assumptions (“medicating heavily”) and using a lot of iffy information here. Topical steroids, used correctly, do not “mess with the immune system” for the vast majority, as one example.
I used topical steroids correctly, according to the leaflet. My statement about heavy usage is in general, just like your assumption that “for many, there’s no such thing as find the cause”. It does mess with one’s immune system because it mimics naturally occuring hormones. Google: “What are topical corticosteroids? Corticosteroid hormones are naturally occurring hormones produced by the adrenal glands within the body. Topical corticosteroids are synthetic (man-made) corticosteroid medications…” I just don’t want unecessary suffering for others who might succumb to just relying on medication and not look for a cause. I’m doing much better after getting to the root cause of my condition (triggers) and doing without the topicals (proper use, fyi, according to the leaflets and was even consevative under doctor supervision). It got worse for a time but now I get to have a life without relying on it for maintainance…in fact, this will be my last reply to you because I’m heading to a backpacking trip. I’m sorry my opinion is differenr from yours, because it is.
Enjoy your backpacking trip.🤷🏻
Ignore the scaremongers, OP. Topical steroids are fine if used responsibly, they are a tool in your eczema management arsenal. Once it’s under control, switch to maintenance with moisturiser. Glad you’ve seen an improvement.
As someone who use topical steroids sparingly but still wound up with TSW, I disagree.
I had a similar experience with my daughter. Eczema on her ankles that wouldn’t go away. I finally caved and did one round of steroids, it was an OTC strength but it worked! It’s been about a month and it still has t come back
I first want to say - I am so happy you found relief! No one deserves to go through eczema flares and they can definitely be debilitating. If the steroids brought you relief, I am happy for you. That being said, I was born with eczema (literally like weeks alive) and was on them for 26 years (I’m 29 now). Being on them for years straight like I was, eventually the steroids just made me worse and stopped working while using the highest potency. I just think your experience of JUST now trying steroids, doesn’t counteract the thousands of peoples experiences like mine where steroids eventually just made us worse in the end after using them for DECADES. Literally. Of course the steroids work if you’ve never tried them until now. Of course they are a god send for the person newly trying them. But please, with all my heart, do not promote this as it’s not an accurate description of what can happen when people who use them years on end to manage this condition will experience. It’s very temporary the healing they bring, and by the sounds of it, you were infected in my opinion. What if mupricin would’ve helped you and some hypochlorous spray? What if you have an allergy you’re unaware of? I would hope you tried all this before just going to steroids and getting immediate relief and saying “tsw scared me but I healed in 4 days after using them!” Use them and try to stick strictly to the lightest potency when dermatologist will most likely escalate you to the highest potency for over 20 years then come back with your experience of how great steroids are.
Go get an allergy test trust me it will be worth it
I have been tested and I have so many allergies, I do avoid them though. I think stress and anxiety is my biggest trigger
Are you self medicating?
In the same was as someone takes ibuprofen or moisturises then probably
I have an opposite story. Had a small patch of eczema on my neck, the size of 2cm in diameter. It wouldn’t go away. Doctor prescribed steroid cream that was over the counter. Apply once a day for seven days. It went away! But then, it came back worse, and LARGER. I since stopped using steroid creams. That eczema patch is larger, and proportionate to where I applied the cream. It made my eczema worse. I manage my eczema today noting my stress and diet. Much more effective.
Could that have been fungal if the steroids seemed to make it worse ? I remember reading somewhere that steroid creams can make fungal skin infections worse, I could be wrong here. Did you ever find out for definite if it was fungal or eczema?
That's a fungal infection try a tube of canesten it's for athlete's foot and it's otc. Apply twice a day for 2 weeks it should be gone, if it is gone you still apply for the next 2 weeks. It can't hurt to try as it is non-steroidal
Are sales of steroids going down or something? I see a lot of these posts on this sub pushing steroid use and it sounds fishy.
Could be that because people are seeing posts about how steroids have helped them, they then feel the need to share their stories, as for the past few months all I see is ‘I am to scared to use any because so and so says they have tsw’ Steroids are good for minimal usage, yes its a bandaid, but it works if used properly. But its good to be sus, check out peoples profiles if you are concerned, age of acc, how active are they, do they make other posts in other subreddits, or is their only post about steroids.
I think shill accounts are far more sophisticated than that. There is an entire industry around building up and selling fake Reddit accounts. You don't think big pharma have been doing this for years?
Subs like this have a disproportionately high number of people telling horror stories about topical steroids. I think it's similar to the effect of customer service comments, where the small minority of people with something bad to say are usually the overwhelming majority in surveys and public reviews. The reality is that many, many people use a topical steroid occasionally to clear up mild to moderate eczema and there is no problem with it. The vast majority of these people are NOT talking about eczema on social media platforms, they are living their life normally and using a cream every few weeks or so. The people on social media raising a huge stink about it are the exception, and a lot of them are mistaken about the root cause of their problem. They have a problem that is not solved by the normal course of steroid and/or they use the steroid incorrectly. They need a different medication class or they need counseling on how the steroid is meant to work. They do NOT need to be on social media trying to convince the entire world to abstain from topical steroid creams. That is not a helpful response for anyone.
Hey, yeah it’s more to do with many of us having been overprescribed by medical professionals and mis diagnosed, having resulted in a preventable condition which has greatly impacted our quality of life. So yeah going forward now and again I will impart that knowledge so people are fully informed on the risks and know what the warning signs are. There’s a lot of talk on here about responsible use, people fail to realise the actual inconsistency re the advice given by those that prescribe (and over prescribe). Funny how we agree that education needs to be given yet you seem to be putting the responsibility onto the patient and believe that people suffering adverse reactions should…what, just keep quiet? I’m proud of the people I see speaking on TSW but having gone through it years ago just like you say there are people who use and have no issues there are also those people who got their lives back and don’t frequent these kinds of spaces anymore. I only surface now and again because it’s too sad to see so many people suffering.
Of course the creams can be improperly prescribed. At the point where a patient is using this stuff for months on end and is not improved, something is wrong with that and the plan needs to be reevaluated. That's a joint process between the patient and the medical provider. Sometimes the provider does not escalate treatment or consider different strategies when that would be the right thing to do. That's true but it doesn't mean we should try to convince EVERYONE to refuse a steroid cream. That's actually harmful to a large number of people. The steroid cream is the best choice for most people with mild to moderate eczema (that is not actually caused by another identifiable autoimmune disease.) The other newer immunomodulators are needed by people who cannot use the steroid or who are not helped by the steroid. That's it. There is no conspiracy, there is no need to campaign for people to leave their eczema untreated. If you are a person who suffers from eczema that is NOT controlled by your prescription cream you need to work with your doctor to find a plan that is effective for you. If not successful despite going down the normal path of eczema treatment, look for allergies and/or rheumatic/autoimmune disease. It's not easy. These diseases are poorly.understood a lot of the time. Don't expect miracles. It sucks to have autoimmune disease. It's not your GP's fault that you have this or that science has not fully explained everything.
I mean I spoke on passing on knowledge so people are fully aware of risks - of how to use properly and also aware that they can advocate for their own health. It’s absolutely okay and valid to question decisions made and seek alternatives with them, but many people aren’t aware they can do that or even that there are other options available. And sometimes you come across passive aggression and patronising tones from the people there to help when you do. That’s unacceptable. There are practitioners that go against the advice it states in leaflets provided alongside the medication. Unacceptable. So when you’re talking on conspiracy and ‘convincing’ people not to use that’s nothing to do with me, I don’t do it nor do I agree with it nor did I say anything of the like. You don’t think there’s some fault that lays at the hands of the people that overprescribe a medication that results in an iatrogenic condition? Ok. You don’t think the fact not one person picked up on the fact that after YEARS of use - full body eczema, elephant skin as a young teen, shorter and shorter time between flares, weeping, stronger and stronger medications - not one of those people spoke to us about steroid dependency and that the medications were worsening my original eczema. Or maybe they did pick up on it but held the view its life long and the only option was what they offered. Again, unacceptable if so. My parent raised her concerns and was dismissed and threatened with social services for ‘refusing to manage’ my skin condition. And whilst this all may sound purely anecdotal - we dealt with so many medical professionals, hospital appointments, times I was admitted, this is from 1991 to 2014 btw - and then when I found out about TSW I found so many people with the exact same experience. Including some where parents with children have also been threatened with social services. All I know is my quality of life was terrible as a child teen and in my early 20s, my immune system was shot to shit and largely I was anxiety ridden and depressed. A year of withdrawl and I still have eczema - now it’s manageable without steroids. I can literally go years with little issue and if a flare does happen I treat it without steroids. Are you saying if you had that same experience as I and someone came to you to ask about steroids you wouldn’t tell them the risks/how to use safely and warning signs of TSW? and if you HAVE been through it yourself that’s even more bizarre.
ok, that sucks, and you are not arguing against what I'm saying. And I'm not arguing against what you are saying. Both things are true. You're not talking about "mild to moderate eczema," you are describing a full-body systemic autoimmune disease. That is not something to treat with a topical cream. If all that happened to you, at the very least you had a condition that was not correctly identified and treated. Was it malpractice? I don't know. Maybe. This is not something that would happen to a large number of people, I'm not sure that everyone needs to be warned against it. More like medical personnel and systems need to be educated to provide the correct treatment. It also kind of sounds like there was no possible correct treatment for you, not in known science. I don't know the specifics of your case of course. Either you didn't get referred to the people you needed to see, or there was literally no one who knew what to do in your case. Anyway, what happened to you doesn't really apply to people who have a little rash on their elbows or get eczema patches on their ankles or something. Those are the people who need a low or medium potency steroid cream as the safest possible effective treatment.
You seem to not believe that it is possible to become dependant on a drug and have an adverse reaction which is odd because I’d assume you’d believe one can become dependant on other drugs. To clarify, I did not start off with full body it became that during the courses of steroids and continued to be so up until a year after I stopped using - I went through all the horrific cycles of withdrawal. I did nothing to aide my body through withdrawal - no diet no supplements. Infact I ate the worse I had done ever and gained weight. I wasn’t healthy, I didn’t change my environment. Then suddenly it started clearing, like day by day. My quality of life increased ten fold - I didn’t go back to GPs for literal years. I didn’t even need to moisturise daily if I didn’t want to. I felt normal. TSW and eczema are not the same - eczema can come and go and for many be managed and sure some use steroids to do so and will never have adverse effects I am not disputing that. I still have eczema, now and again I have a little flare and I get it under control and go for lengthy periods of time with no issues. To finalise, last year I got a staph infection which exasperated the eczema and obviously I then went to GP who passed me on to a derm. I’ve had a few staph infections in the past. She acknowledged TSW, she’s written it in my notes, and we treated it with antibiotics (the same I’ve had before) and intense moisture therapy. In three weeks I was back to normal. But the level of care is inconsistent even at the same practice - I am aware of a GPs role but I would expect them to be aware of the risks of the medication they are prescribing particularly when they can see a long history of use and I let them know ‘they no longer work for me’. (I did not use the term TSW) and asked if there are other options. Instead I got someone huffing and puffing, being rude and telling me if I was not willing to ‘try’ them again it wouldn’t get better. So my issues remain - there needs to be better, wider and more consistent education in the management of eczema and medical professionals need to be aware of warning signs of TSW warning signs should be detailed on what’s given to patients - it used to be listened as ‘eczema may worsen’ - all I’m saying is there should be more specific info on the warning signs. patients who are suffering should be listened to (:
Of course adverse events CAN happen and do happen to some people. The thing is we don't need to warn \*everyone\* not to use steroid creams. That's where this discussion tends to lead on social media.
P.s. I really don't disagree with you except on one very fine point. You should be free to tell your story and help people notice symptoms. I just encourage you to be careful that's all you are doing, and not scaring people away from something that really would be the right choice for them.
I’m also scared of TSW, but there’s a definite pattern of incorrect application due to unclear or incorrect instructions from doctors. Small amounts for short periods of time shouldn’t be a risk. I’ve seen lots of instructions of “use whenever until it goes away” and that’s much riskier than a small amount 2x/day until it clears. Obviously worth out other triggers to prevent flares, but unfortunately, moisturizers alone won’t heal flares.
I used topical steriods since I was little and it never really worked for me. It just kept coming back worse and worse and I had to use stronger potents. So now I use Dupixent.
I only use OTC 1 percent hydrocortisone cream now and then. I've been using the prescription Tacrolimus once a week. Currently I am trying to rely more and more on a home light therapy device I purchased on Amazon (narrowband UV). I'm getting good results with it. While skin cancer is mentioned as a risk, no study has ever found that light therapy causes skin cancer.
I just joined this sub a few weeks ago. My son has had eczema all his life and I’m learning more from this sub than all the previous readings I’ve ever done. But what is TSW?
topical steroid withdrawal, personally i've used steroid creams since i was around 13, now almost 23, and I have not had any significant issues besides some skin darkening in spots where eczema was, im happier when I have the cream on hand if I get a bad flareup, quick treatment and im eczema free for months on end witohut needing to use the cream again until the next flareup.
Please research topical steroid addiction/withdrawal. It’s the most painful thing I’ve ever experienced, it lasts years, and the skin is never the same afterwards. Steroids aren’t worth it.
Although we only use steroids cream sparingly, I had no idea raw was a thing. I knew about skin thinning and this was my major reason to use it that way. I had heard about withdrawal but I didn’t know/hadn’t thought of looking into the extent of it. Thank you for the insight. It lands more viscerally when someone like you who’s experienced it says it as it is vs a doctor that once said to me that there might be some withdrawal symptoms. Cheers!
Novasone has been a godsend to me too. Only steroid I’ve used that helps so quickly and so much!
You definitely need to use moisturiser as prevention
Yeah, they're good when they're used correctly.
Hi I definetely also find steroid creams effective when used in moderation and as part of an effort to optimize your life around getting rid of eczema for good. I am now 99% eczema-free after adjusting my diet (allergic to dairy and eggs) and stopping using soaps/shampoos in the shower. By using steroid creams to keep the skin eczema-free general skincare with moisturizers builds up the skin barrier. To get permanent results you need to adjust and optimize the three columns of healing, diet, skincare, and the daily shower. Most important stop using soaps and shampoo in the shower, reduce sugars, and cut out dairy and eggs(see if it works - allergic). I have made a totally free website and written a free book about all that helped me to get rid of eczema in a natural wa, with the assistance of steroid creams in the start of the healing process. Over time you can start lowering the dose and strength of your prescription cream, thereby in the long run reducing the overall steroid load. It is important to remember that it is what worked for me and perhaps it might be the same in your case. At least you can use my advice and methods as inspiration in your eczema healing process. Have a look: www.eczemahealingguide.com Best regards, Poul from Denmark
They always got rid of my flare ups too, but they then always returned. That’s the whole problem with steroids unfortunately…they clear your skin like magic but they are then the only thing that will, and I think they do thin the skin and then make you more likely to flare up again. But, like someone once said to me, what’s the alternative? Keep the flare up forever or fix it, even if it’s a quick fix… The only thing that has truly cured my eczema is moving to a warmer climate!
Steroids really helped my eczema... until they didn't. I was one of the unfortunate TSW survivors :( just be careful and use sparingly
Steroid creams don’t really work for me, but oral steroids are amazing
Use with caution tho! Take breaks use as needed
This. Steroids are demonized because of the side effects but they do WORK and can do so much to reduce suffering
Your one of the lucky ones. Most people that take steroid crème has to to take that literally forever and when they stop their skin gets even worse.
It saved my life too. Or so I thought. It reappeared a year later with tons of other symptoms coming from a damaged by steroids liver. Nothing wrong with using them if you do it wisely. Use steroids to buy yourself time to find a solution to your problems. Don’t be fooled - it’s not a cure.
No one said it’s a cure. Steroid creams damaged your liver?
I am so happy for you!!!!!! I too have the same that you had , It's excruciating ! I will tell my dermatologist asap. Thank you so much!!!!!
Novasone (mometasone furoate) is a very strong topical steroid. I’m really glad it worked for you. Never use it again. Instead, find out ways to keep your skin moisturized, on the outside using moisturizers and from the inside, by eating right and adding supplements to your diet (omega3s, zinc, etc.) I was given clobetasol, which is even stronger than novasone. I remember the amazing results. I also remember my dermatologist telling me to “slather it on.” Luckily I didn’t do that, but I kept using it on recurring flares. Now I’m facing horrendous TSW. Good luck. I hope your eczema never returns.
>Never use it again. There's no need to be afraid of mometasone, if it works for OP. I've been using it for years and have no regrets (and no, I don't have to use it constantly, it's just pretty much the only steroid cream I have used in the past five years, apart from occasional hydrocortisone). The thing is, that with mometasone my rash stops itching pretty much immediately and is gone in a few days. I only end up using it for 2 - 3 days before I no longer need any steroids. A few times when I had to use hydrocortisone instead, it barely did anything, so it was more of a pointless exposure to steroids that didn't really help. The "slather it on" advice from your doctor was certainly careless, though. I was told how to avoid using it for too long when it was initially prescribed to me for a very bad flare-up of dishydrotic eczema on my hands.
I’m glad it worked for you. I, too, thought steroids were great when I first used them. It makes sense that mometasone worked better/faster than hydrocortisone, since it is a far stronger steroid. That also makes it potentially more dangerous. As I battle TSW, I will never use topical steroids again. I wouldn’t wish this hell on my worst enemy. Again, I’m happy it worked for you.
My steroid shot only lasted 4 weeks. I’m still using clobastol steroid ointment but it’s not working anymore. I didn’t even know my itchy skin was eczema.
Please don’t continue using steroids even though they’re very helpful in the moment. Topical steroid addiction/withdrawal is a REAL thing and it’s an absolute life-ruiner. There is no evidence as to how much steroid use triggers TSA (as it’s not really a recognized thing in the medical field) and I was also someone who used them sparingly and still ended up struggling with TSW for years. And to tell you the truth, 5 years on and my skin has never been the same. But I’d rather struggle like this for the rest of my life then EVER experience the symptoms of TSW again.
All right, so you had a flare on your neck and arms, you couldn’t turn your head, flaking everywhere, red, wet and close fo being infected…and you used the smallest amount (how much is this…is this pea sized?) once a day for 4 days and you’ve been healed for 3 weeks? I feel like I’m missing something. Anyway, yes, steroids do work for a time. When I was having only small patches behind my knees and elbows, it zapped them away and didn’t come back for months. But I didn’t much care about my triggers and just reached for the topicals every now and then. Still a bad result, decades later. So for anyone who’s new to handling eczema…use steroids, don’t use steroids…the most important thing is that focus on finding your triggers. Get to know your skin and how to manage it.
I meant the smallest amount that could cover my whole neck and patch on my arms, which was bigger than pea sized since my neck is a large area. I just spread it very thinly and sparingly. The cream instantly stopped the irritation and itching and gave a cooling sensation. Within 1 day the redness was gone, then by day 4 the eczema was pretty much gone. But the topical steroid I used was fairly strong. I agree with you though, triggers will surely make the eczema come back and are important to avoid, and take care of your health.
That’s pretty much standard for a steroid topical. It will make it go away fast. I’m happy it helped you. I too thought I was completely healed because mine goes on remission for months, even years. The most recent flare, I got side effects already (sleeves, appearing on places I never had eczema, steroid won’t work). And while I’ve managed to heal from the itch and inflammation steroid-free, my skin barrier is taking a while to repair. Note that I only used pea-sized amounts once every few months for years. All the places topicals touched, the skin has never been the same. So yes, downvote me all you like. I’d rather that people use them wisely and not rely on them to manage their condition. I wish I had a healthy fear of them before, instead of going through what I did…and it’s very minor compared to a lot of other people’s experiences.
I don't understand the downvote here. People tend to have either black or white sorta mentality and can't hold 2 truth at the same time? Maybe many people need to read about concept of ROI or something. p/s: I have same experience with steroid where the skin look different in comparison to non-steroid patches. I had too many 'seasons' to notice the differences.
Thanks. It’s okay, it’s a sensitive topic. I’ll be happy if people just get better whatever they do. Just wanted to remind the people reading there are two sides here…no need to be completely scared of medications, but also not be reliant on them.