I remember a little boy in my class in the 70’s crying in the playground because it was so cold and he had shorts on and his eczema was bleeding on his knee joints…the teachers didn’t seem to care…it still upsets me now to think of that.
Finally this is reaching the mainstream! Thank you This Morning for pursuing this. I was applying for 2.5 years. Now at 15 months of TSW I’m over the worst of it. A horrific “condition”. The whole pharmaceutical industry is corrupt. They want us to be addicted! Remember - a patient healed is a customer lost.
As someone who had eczema as a child and not again until age 39 (this year), I can't believe the things I've come to learn, that they just ply you with steroids and aren't warned of the risks. I'm just lucky I'm a cautious person and do my own research. My eczema is moderate, but I'm absolutely not going down the steroid route (other than the initial 7 days and a tiny bit now and again if I get a bit of inflammation on my face), I can't risk suffering from TSW like this poor woman and countless others. I'm trying to manage eczema through methods she mentioned, actually. Dead sea salt and oat baths, plus I use it in a spray solution on non bath days and lots of moisturiser. I've not scratched in just over 2 weeks at this point. I still get itchy but I'm able to resist, just hoping it will start to improve soon.
I experienced this when I was given steroidal cream for my face acne at 17, two years later my skin was messed up and the dermatologist was horrified that I had been given this cream, let alone for my face. Took 15 years to balance back to normal
Oh thank GOD a dermatologist is finally acknowledging this in public! I’ve been suffering from TSW for 3 years - it is a fate worse than death, and most of us have to battle through it alone with no support from the medical community.
Yes! It saw so many doctor, dermatologists, allergists etc and everyone just told me to get back on the steroids. FINALLY, I went to get another dermatologist and she heard my story. The first thing she said back, without me even bringing it up, was “I think your skin is withdrawing from steroids” She saved my life!
I believe all dermatologist are singing hymn sheet. All say the same thing. Moisture and put the steroids cream on. The only people who seem to understand are the people who have it. I believe everyones eczema is unique to them. One type of medication won't work for everyone. These dermatologist think they know your eczema better than you which is annoying. It's a all about diet and mental health, that's how you can control, but easier said than done
I’m so sorry your having to deal with this. It’s insane the medical industry still don’t have real answers for this. I can’t recommend the Medical Medium books enough, there’s plenty of free info online too from Medical Medium talking all about the real root causes of eczema and psoriasis and how to heal it. I had psoriasis all my life and would break out in spots of it all over my body. I don’t now I’ve healed it. Yes it can be healed and reversed!! I’ve been following the protocols from the Medical Medium books, totally life changing.
I suffer with chronic eczema and found this to be very helpful. What a brave woman. Also the Doctor had a lovely good old fashioned bedside manner with empathy. Wish there were more like him.
Try Hanna sillitoe Multi strain Biotic. It all starts by improving the gut health. My daughter has eczema, had the biotic and within 6-8 weeks was clear. Sea salt baths do help Also
I’ve had TSW for 2 years this month. I’m So glad it’s getting more recognition. The worst thing about this is that there no help from doctors or dermatologists
What a brave lady to come on and address such a widespread issue of the dangers of topical steroid use. Dermatology is NOT the foolproof science backed, has all the answers solution that it professes to be. Having gone through my own struggle with painful rosacea and skincare products worsening my skin over the past 10 years and the only advice from dermatologists was to carry on using these products and once being prescribed a steroid cream which i reacted horrificly to.... I can safely say after a year of putting nothing on my skin it is Finally begining to heal. But my god the horrible journey I've been on just like this brave woman. We honestly need to question dermatologist advice and realise that they give very blanket advice that does not take into consideration more sensitive skin types which are so so common today. Great awareness for TSW. Sending strength and love to everyone going through it. If you feel suicidal you are not alone. You are so brave and please persevere with no steroids and letting your skin heal on its own even if it takes years.
Thank you to Amy and Dr Moncrieff for speaking out about this. I’ve been going through TSW for 2.5 years and it has been the most brutal and traumatic experience of my life. I hope the medical profession and the government are listening. This condition is ruining lives. Listen to your patients, fund more research and please take TSW seriously!
@@emms4867 it’s a lot better. Not completely healed but I’m able to live a pretty normal life with tolerable irritation on my hands (where the steroids were). At the start of TSW the symptoms were severe and full body and I was bed/housebound for 7 months. I’m very grateful for where I am now but it has been an incredible struggle with very little support from doctors or dermatologists. I hope change is coming soon because no one should have to suffer like this, especially not due to a prescribed medication.
Amy you are strong beyond words! The symbolism of that butterfly shirt is not missed on me girl!! You are in the throes of such a devasatingly painful metamorphosis and the humble grattitute you showed for your friends and family demonstrates such profound inner beauty witnessed only by those who also know the depths of this kind of suffering. I was in your condition for what felt at the time like eternity. My withdrawal took four years, the first two severe, full body, and debilitating. The later comprised of many good months followed by surprising and long heartbreaking flares. It seemed to define my whole existence, because everything else about me seemed to be stripped away. I'm fully healed now with minor rashes here and there probably not worth mentioning. I swim in the ocean, run and sweat, wear makeup and perfumes, and revel in the softness of silk of chenille! I know you will arrive at this place too and will be utterly overwhelmed with peace and relief if you can only survive this. It's okay if you don't do it perfectly or know exactly to be really good at being chronically ill, but if you can just live through it, you will be met with an answered prayer. And that feeling will come back over and over again in simple and quiet ways, like some future day when you dip your hands into a cold stream to splash your face. And I know that day is not here now, and so this distant fantasy might come across as empty words. So, if I can offer you one thing now, it's the recognition of the indestructible light within you. If you cannot have physical ease, then I pray you have peace from knowing you are strong and you are loved and you WILL endure!! All my best Amy. -Amanda
I had TSW. As a mother in my 30s with a full time job, I couldn’t ride it out. Never suffered with my mental health before but honestly wanted to die. I’ve never experienced pain like this and pray to God I never will again! I took methotrexate and I’ve been clear two and a half years 🙌
I really feel for this lady😢 I don’t have eczema, but I have severe psoriasis and it’s very similar and debilitating. Sending love to everyone who is suffering, stay strong💪🏼
The pain of a doctor telling you steroids are "your only option" is unbearable when you know tsw exists. The fear of being stuck between steroids and uncontrollable pain with no offered alternative is heartbreaking and it's amazing to see people speak about it publicly 💕
My heart truly goes out to people suffering with this debilitating condition. One of my children suddenly broke out when he was only 4/5 months old and thankfully grew out of it but there was a period of a few months before we got referred to the children’s allergy clinic when he would scratch so badly he would bleed, sleep was disturbed etc it was so awful.
It's amazing to see this... like this woman, iv been using topical steroids all my life... stopped using them in January this year... my skin has been constantly itching oozing and stinging and I haven't been able to sleep consistently for months... as the dr said i am of those who cant use my emollients as they sting to wash even stings..I can't even wear underwear and have to wear very light clothing.. so I went no moisturise and changed my diet ... low hystamine, hi protein diet, no dairy diet...drink lots of turmeric tea with vit a c b12 b5 and 6 and vit d.. now my skin although still very itchy has calmed down alot...it now wants oils as it has become very dry...it's hard but I would never go back to that poison of topical steroid.... the pharmaceutical industry need suing as far as I'm concerned.. Dr's need to look in to holistic therapies that they've been opposed to for all these years they will find some answers there...
Amy I am in the exact same boat as you. I'm 21 diagnosed with Severe Widespread Eczema. I've been on dupixent for a few months and it's been better but it's still nowhere near perfect. I empathise with you so so so so much. Thank you for representing our community with such bravery ❤
i’ve had eczema since birth too, it’s getting better now, im 22 and focused on my diet or triggers and have started training at the gym. my skin has never been better. you need to figure out the triggers and work round them. I really feel for her, i know exactly how she feels, I was at the lowest points of my life when mine was bad.
For me it has been 7 years. Everything is fully healed except my hands. I am in agony. My hands are very cracked open and it keeps me from doing stuff around the house so you can imagine how hard it is for me at work. I have to believe that it will get better.
For those doctors who have always given me topical steroid creams and laughed in my face when I told them I'm in TSW and I don't want any steroid, they should be re-educated!
It’s honestly a joke. They say that the cream should be applied for the short term, no more than 2-4 weeks, but when you tell them that you’ve been using for months/years it’s a disgraceful contradiction to they tell you to keep using!
My sibling is suffering from a severe case of eczema that has covered his entire body, leading to immense physical discomfort and greatly impacting his mental health and overall well-being. We are feeling helpless and are reaching out for any help and advice that can alleviate his condition.
I suffer from the same extreme condition. I’ve been on steroids, tried light therapy(UV and red light) and many medications. Most did not work well; however, I am on a new medication, a biweekly injection called Adtralza for the last six months. Most relief I’ve had in years. It’s a horrible condition and I wouldn’t wish it on anyone. All the best to your sibling in their fight to get better💚
I’ve been through this over the past year and it’s completely soul destroying. Was sent to 2 specialists who tried to prescribe me more steroids. It was an experienced nurse who listened and understood. Ended up having UV light therapy which was pretty good. Not out the woods yet. Just know that there are others out there that are also suffering. You are not alone.
@@robertthomas1154 I’m still in the healing phase but way better. Yes quitting alcohol works. I found if I had 1 drink my skin would burn. Very odd. But must be due to dilation of blood vessels. Sorry UV Didn’t work out. Are you going to try any other methods?
@@FizzWizard congrats for getting better. It’s a long journey. I live in China so I’ve tried various traditional medicines here. Acupuncture helped but I really hated the needles. I bought “The eczema diet” book a year ago, I’m glad I did, following the instructions helped a lot too.
It’s so nice to finally see a dermatologist/doctor from the industry finally recognising the realisation of us who suffer with TSW and eczema itself! I suffered with this 3 years ago and still have my flare ups at seasonal peaks of the year - seen doctors, dermatologists and nothing seems to work for the long haul. Much better than I was, I couldn’t even put water on my face/body as the pain was so severe and awful I would scream.
My child suffered exzema and they pushed steroids and I said no. His evzema is gone but there are food issues - food allergies that lead to exczema. It is a gut issue, address gut problems and you will cure it. It is not skin issue, its a gut.
I was on steroids for a week and I looked like a hot mess. I was so bloated and swollen. It only masked my symptoms and once I got off the steroids my symptoms came right back in full force. Never again will I agree on taking steroids.
I dealt with this two years ago, worst thing that ever happened, I'm totally healed now. I used to put on topical mometasonefuroate on my lips every 3 days for 6 years straight, when I came of from it, it came with a severe vengeance of lips being swollen, kracking bleeding and shedding for 3 months, also got eczema on places I never had before never in my life ever again
Prescription steroids are the first medication doctors go to. Steroids have to be used so carefully and minimally. When your skin breaks down like this it leaves you so vulnerable to infection. Eczema is so personal to the person, as what suits one doesn’t suit another. Speaking as an eczema sufferer and parent of a child diagnosed with acute eczema at age 4 months. I find diet is very important, sleep, keeping healthy, natural fibres, non scented cleansers, natural products and recently no gluten or lactose. As I say everyone is different and I am so sorry Amy and others are experiencing TSW.
I’m going through this now and I know people say to use dry therapy not washing or drinking much water, just letting your skin dry out but this is what makes the itching worse and your skin is trying to detox from the cortisone. I made up a tallow cream adding frankincense essential oil and it has been a lifesaver. My skin is still inflamed but it is bearable. I can sleep and the itching is significantly decreased. There are many UA-cam tutorials on making this natural cream. It doesn’t hurt to apply at all. Because the beef tallow is similar in makeup to our own skin it works wonders. I buy suet from grass fed cows from my butcher and they mince it for me. It is very cheap to buy. I render down 1 cup suet in a heavy based pan on the stove on lowest heat. Then add 1/4 cup avocado oil then add 15 drops pure frankincense essential oil
My eczema improves when I eat a strong probiotic like Cocoyo yogurt. I'm definitely allergic to even the tiniest trace of black mold on the skin of onions, even if the skin is peeled off. Eating lots of cocoyo suppresses the eczema response. Good luck to everyone. Following an anti inflammatory diet helps as well to control the eczema.
Been on severe eczema and topical steriod withrawal myself for 9 mos and now I am clear. Frustrated from all my dermatologists I had to go to a functional doctor. must say I had to fix my leaky gut to heal from the inside. having grain free anti inflammatory low-carb and high protein diet, exercise, daily morning walks, and supplements like probiotics,digestive enzyme, zinc, fish oil, turmeric, glutamine has worked for me tremendously. Going to a functional doctor who knows about leaky gut and tsw will definitely help fix it.
I suffered this for 3 and half years after total cessation of steroid creams , my god , living torture , my dermatology put me on dupilimab, saved my life literally 😢❤
I have been suffering with the same for 30 years on and off. And only within the last few years was it at its worst. I stopped using steriods for a number of years now, but i do get waves of withdrawals, right now i am at my worst so i hope things get better.
Diet does absolutely. I had it since a child where my skin would itch and split on my hands and knees especially. As a little girl, a boy called me "alligator skin". But my parents fought hard for me from UV lights to taking me to salt water beaches to steroid creams. Diet was improved when I got older and I really watched eating around my triggers. I can have diary now where I couldn't back then. But food and some seasonal allergies still remain. God has just helped me be free from the more heavier part of it.
I’m sorry to hear about this experience - I have atopic dermatitis and that alone is exhausting: even when the skin isn’t ‘flared’, it’s incessantly dry and sensitive. Topical steroids work but as soon as they’re stopped, it starts coming back and then it’s another month of watching your skin flare before allowed to start steroids again. I don’t feel safe in the hands of dermatologists (my referral wait time is a year long), but I dearly hope all who suffer with it start receiving better, more empathetic treatment soon, with higher quality emollients available on the NHS (eczema can be EXPENSIVE!)
My son had eczema shortly after he was born , one midwife thought it was a heat rash but advised to make a doctors appointment , year later 2009 i ended up with eczema
💯this happened to me.. tsw is a million times worse than my eczema ever was.. and after tsw I now live with constant anxiety that I never had before and my immune system hasn’t been the same either
I think it's absolutely so important that this doctor acknowledges that there is a problem with steroid use. It's wonderful to see. However, I lost him on the last part where he said the vast majority of people do fine with longer term use. This is very misleading. He needs to learn the piece from Dr. Rapaport about 2 weeks of use. These drugs are so strong now that addiction can happen to anyone. I am definitely addicted to these drugs. Over 20 years ago I was going to the GP (of all things) about every 2 weeks and ended up with stronger and stronger stuff. If that doesn't fit the definition of addiction than I don't know ☹That's the hardest piece of the puzzle of this condition, unfortunately- the addiction
Thank you This Morning for raising awareness of TSW. I'm 8 years in and still have flares. Steroid creams are not a long term solution for skin problems.
Just read an article of a girl who suffered from Topical Steroid Withdrawal symptoms and got better after using the 'no moisture treatment': no use of a moisturiser, a few cool showers a week, moderate exercise, and reduced water intake Thank God, her skin started healing some weeks after.
It’s so unfair that some people suffer with this. I know so many people who have this and it’s just horrible. It must be awful to be massively itchy and sore all the time. Steroid cream is so harsh for the skin, no wonder it inflames already inflamed eczema skin 😢I hope this woman’s skin improves, it’s just so unfair
I have seen some serious cases like Amy's on TV and YT lately. I can't imagine how terrible their situation is. I have eczema that is 5-10% of what they have, but even that is terrible. Doctors have to educate themselves in waiting for better medical treatment.
This is recognized as a decease in Japan, UK and Australia, dermatalogist aren't speaking enough. Dr. Marvin Rappaport has been treating this desease for many many years and even he says that doctors in general don't treat it right or omit the root cause.
Really feel for anyone who suffers from this, it’s a horrendous condition. I myself have had eczema on and off since a young age and have used ointments and creams too, not understanding that it’s a gut imbalance. I have found avoiding dairy, gluten and sugar has really helped my skin. I can’t recommend a good nutritionist enough to help with this. Agree with others here, functional medicine route is the way to go. Please do see a nutritionist or kinesiologist, it will really help you. I pray you will get better 😢
I believe my son is suffering TSW, after been prescribed steroid creams from the age of 9 months to age 16, he was also prescribed protopic as well, which I also thinks adds to suffering.
Topical steroids withdrawal is very real and fairly common when coming off steroid creams. Best thing to do is go down the natural remedy route. Personally I found Ayurvedic treatments work best for me.
Working with private lab testing under the guidance and support of a naturopathic or functional medicine provider is KEY. Don't treat the symptoms - address the root cause.
I am now 2 years and 2 months with TSW. I am under the care of Dr. Rapaport and from reading all his work and studies, he has always said that eczema usually wears off at a certain point, but eczema does not burn and itch as bad as going through TSW. I'm in California and my general doctor and dermatologist does not want to recognize my condition. I've been through a whole lot and testings that they gave me and it was on my own when I found out that I was suffering with TSW. It's a serious condition and nothing can be done but hand holding and maybe a sleeping med and a medication for itch, but that's it. Just have to go through the motion.
I have been incredibly irritated at the medical profession not acknowledging steroid withdrawal and there isn't enough research on it either. Its pathetic really meanwhile so many people suffer with it. Madness!!
I think they are not aware that it is even more dangerous. The don’t have a clue about the actual results of tsw. Most people find out and never go to a dermatologist in their life and don’t talk about it. They probably put that in the statistics as a persons that was cured.
I've experienced something similar on my hands. I stopped the steroid cream and did my own research and bought a cream from Eucerin that actually helped. Steroid gave me a reaction and I'd still itch and have disturbed sleep, and swelling, cracked hands. Very sore and painful! Thank you for raising awareness. Steroids are not a long term solution
What about gut health? Probiotics? Kefir ? Chuckling goat has amazing kefir. Start with a teaspoon a day only increase if you can tolerate. They do lotions as well and super sensitive skin balm which is amazing
Homeopathy was the answer for me, please try it. I struggled for over 20 years. I tried creams, steroids, different foods, avoided foods etc and I tried homeopathy and it changed my life. It’s an alternative medicine and encourages the body to heal itself
Doctors should suggest more natural methods for slight eczema patches first before it gets worse. Such as applying a combination of oatmeal, eurucin, honey, aloe vera, and etc. Consuming magnesium, fish oil, and vitamin c supplements helps with the pain and bleeding/freezing. There should be more investigations into supplements/ natural topical appliants rather than steroids. Try all flowers/plant species and compare if needed. Rather than going straight for a steroid application.
I'm wondering if something in the ingredients in these steroids changed in recent years. I used them off and on but never had these type of reactions until I was an adult. We know consistent steroid usage over long periods of time isn't good but these companies are cutting corners more and more for larger profit.
I have been battling eczema since we came out of the pandemic and managing it is so difficult at times it really brings you down and there is just no cure for it, steroids are not a long term fix there needs to be more done to help people suffering with this
I used daktacort cream 2% from my doc for ringworm, got rid of the ringworm rash and now my tsw is worse red sare and oozing. Where ever I put the cream 😡
Try taking mineral oil. My father had firery eczema and for about 3 straight years he lost so much weight... Was always freezing cold... Itching and flaking all over the place. Fortunately his face was about the only part that was not effected. He started taking mineral oil every day and his skin cleared right up. It took a couple months before the skin started to feel soft again.. But the extreme itching and pain noticeably diminished within a few days.
Removing gluten from my diet is a life changer. Removing dairy and sugar will also help. Read up about the gut microbiome. I highly recommend Metagenics Vitamin D3 5000 to 10 000 international units per day is also a game changer. 10 000 international units use on a temporary basis
Diet is not always going to be the answer. And what helps one person is not going to help everyone. Amy, the woman in this video, stated she has celiac disease… so she never eats gluten anyway.
@@abbyk9774 but the likelihood that she has replaced the gluten with so-called "Free From" products filled with preservatives, refined maize, stabilisers, preservatives, SOY and other junk is very high. The fact that they didn't even MENTION her diet is crazy.
While I agree with the statement of examining the gut microbiome, each person's diet and nutrient response is different. We have to be very careful about encouraging people to take out foods because it contributes to food fear, eating disorders, and unnecessary allergy response. I've personally benefitted from removing gluten, dairy, soy, and egg, along with some other things, but I don't think that needs to be the case for most people. A person should only take supplements based on their blood work and having it reviewed by a qualified provider, as it can be unhelpful if you take something because it sounds like a good idea and have no idea where your baseline is. Another big angle of this is the health of the liver (which steroids do have a signficant impact on), and the pH balance of the stomach acid. Jennifer Fugo's "The Healthy Skin Show" on UA-cam is a great resource for those interested in exploring more the root causes of skin rashes.
Also make sure to check if your intolerant to any food as that is a main cause. I had issues with severe excema Milk, Sugar and Yeast was the cause. In regards to Meds. Cyclospolorine is a good for for a couple of years. Dupixent injection might help but again look at what food you might be intolerant on
I can’t speak for her of course, but many of us who have been harmed by medications, as is the case with topical steroid withdrawal, are understandably fearful of turning to other medications to solve the problem, especially as there is currently no research into effective treatments for TSW.
Dupixent is the best thing that ever happened to me, it's so freeing knowing something finally works, I had severe atopic eczema all my life , in and out of hospital all the time and dupixent was an absolute godsend when I got put on it the second it was available
@@QuintilliousI’m glad to hear it helped you, and am sorry for the horrible experience you had to go through before finding it. May I ask how your skin is doing now while on the medication? Does it still dry up lots every day or get red?
Used hydrocortizon for about a month - disaster my fore arms were "scared" from sunburn in S African beaches so used about 4 tubes of Hydrocortizon over a month, big mistake now after about a week without my skin is just getting back to normal thickness,
I had this then started using over the counter cera ve and never looked back. Wasted 3 years listening to doctors who gave me steroid cream that ruined my skin.
AMY sweetheart. How about asking DR VIVEK JOSHI (with over 2Mil subscribers) whether his DIY Fermented Rice Water would help? 🤔🤔 He has JUST uploaded the most simple NO FUSS NO COOKING etc. recipe on his channel.
Look at Demodex Folliculorem as a potential irritant. I used Ivermectin to control it. Ivermectin works well on parasitic infections. The inflammation Demodex cause is when they die off. Killing all of them within a month caused a great flare up of symptoms, then my face cleared up. Opthalmalogists are a great resource on Demodex, as they tend to colonize eyelash follicles early on.
This doc is cool but he’s bugging. Look you don’t treat eczema with creams. You treat it with diet, fixing gut microbiome or avoiding allergens. Prior to the 60s they didn’t use cream.
Doctors don’t like you questioning their diagnosis as they want to appear as the most intelligent when root cause analysis would be more beneficial. Way more needs to be done around stool sample analysis and gut health.
I remember a little boy in my class in the 70’s crying in the playground because it was so cold and he had shorts on and his eczema was bleeding on his knee joints…the teachers didn’t seem to care…it still upsets me now to think of that.
There is a lack of empathy in this world
Finally this is reaching the mainstream! Thank you This Morning for pursuing this. I was applying for 2.5 years. Now at 15 months of TSW I’m over the worst of it. A horrific “condition”. The whole pharmaceutical industry is corrupt. They want us to be addicted! Remember - a patient healed is a customer lost.
im in my 2nd week, mental symptoms are insane, I am literally suicidal and weeping and having nervous break downs
@@evefairy7740I hear you!!
As someone who had eczema as a child and not again until age 39 (this year), I can't believe the things I've come to learn, that they just ply you with steroids and aren't warned of the risks. I'm just lucky I'm a cautious person and do my own research. My eczema is moderate, but I'm absolutely not going down the steroid route (other than the initial 7 days and a tiny bit now and again if I get a bit of inflammation on my face), I can't risk suffering from TSW like this poor woman and countless others. I'm trying to manage eczema through methods she mentioned, actually. Dead sea salt and oat baths, plus I use it in a spray solution on non bath days and lots of moisturiser. I've not scratched in just over 2 weeks at this point. I still get itchy but I'm able to resist, just hoping it will start to improve soon.
I experienced this when I was given steroidal cream for my face acne at 17, two years later my skin was messed up and the dermatologist was horrified that I had been given this cream, let alone for my face. Took 15 years to balance back to normal
Oh thank GOD a dermatologist is finally acknowledging this in public! I’ve been suffering from TSW for 3 years - it is a fate worse than death, and most of us have to battle through it alone with no support from the medical community.
Yes! It saw so many doctor, dermatologists, allergists etc and everyone just told me to get back on the steroids.
FINALLY, I went to get another dermatologist and she heard my story. The first thing she said back, without me even bringing it up, was “I think your skin is withdrawing from steroids”
She saved my life!
Ditto
I believe all dermatologist are singing hymn sheet. All say the same thing. Moisture and put the steroids cream on. The only people who seem to understand are the people who have it. I believe everyones eczema is unique to them. One type of medication won't work for everyone. These dermatologist think they know your eczema better than you which is annoying. It's a all about diet and mental health, that's how you can control, but easier said than done
Please look at homeopathy guys
I’m so sorry your having to deal with this. It’s insane the medical industry still don’t have real answers for this. I can’t recommend the Medical Medium books enough, there’s plenty of free info online too from Medical Medium talking all about the real root causes of eczema and psoriasis and how to heal it. I had psoriasis all my life and would break out in spots of it all over my body. I don’t now I’ve healed it. Yes it can be healed and reversed!! I’ve been following the protocols from the Medical Medium books, totally life changing.
I suffer with chronic eczema and found this to be very helpful. What a brave woman. Also the Doctor had a lovely good old fashioned bedside manner with empathy. Wish there were more like him.
Try Hanna sillitoe Multi strain Biotic. It all starts by improving the gut health. My daughter has eczema, had the biotic and within 6-8 weeks was clear. Sea salt baths do help Also
I’ve had TSW for 2 years this month. I’m So glad it’s getting more recognition. The worst thing about this is that there no help from doctors or dermatologists
What a brave lady to come on and address such a widespread issue of the dangers of topical steroid use. Dermatology is NOT the foolproof science backed, has all the answers solution that it professes to be. Having gone through my own struggle with painful rosacea and skincare products worsening my skin over the past 10 years and the only advice from dermatologists was to carry on using these products and once being prescribed a steroid cream which i reacted horrificly to.... I can safely say after a year of putting nothing on my skin it is Finally begining to heal. But my god the horrible journey I've been on just like this brave woman.
We honestly need to question dermatologist advice and realise that they give very blanket advice that does not take into consideration more sensitive skin types which are so so common today.
Great awareness for TSW. Sending strength and love to everyone going through it. If you feel suicidal you are not alone. You are so brave and please persevere with no steroids and letting your skin heal on its own even if it takes years.
Thank goodness it’s being spoken about in the media! Feeling validated !
Thank you to Amy and Dr Moncrieff for speaking out about this. I’ve been going through TSW for 2.5 years and it has been the most brutal and traumatic experience of my life. I hope the medical profession and the government are listening. This condition is ruining lives. Listen to your patients, fund more research and please take TSW seriously!
Sending love and support. Sorry you had to go through this. just curious about your experience, how is your skin now 2.5 years on?
@@emms4867 it’s a lot better. Not completely healed but I’m able to live a pretty normal life with tolerable irritation on my hands (where the steroids were). At the start of TSW the symptoms were severe and full body and I was bed/housebound for 7 months. I’m very grateful for where I am now but it has been an incredible struggle with very little support from doctors or dermatologists. I hope change is coming soon because no one should have to suffer like this, especially not due to a prescribed medication.
@@emms4867 I’m doing very much better thanks. Still a bit of healing to go but mostly doing well. Been a struggle I would not wish on anyone though.
You’re over the worst of it. I’m at 15 months now. My worst breakouts were at months 9 and 12. Getting better now though.
Amy you are strong beyond words! The symbolism of that butterfly shirt is not missed on me girl!! You are in the throes of such a devasatingly painful metamorphosis and the humble grattitute you showed for your friends and family demonstrates such profound inner beauty witnessed only by those who also know the depths of this kind of suffering. I was in your condition for what felt at the time like eternity. My withdrawal took four years, the first two severe, full body, and debilitating. The later comprised of many good months followed by surprising and long heartbreaking flares. It seemed to define my whole existence, because everything else about me seemed to be stripped away. I'm fully healed now with minor rashes here and there probably not worth mentioning. I swim in the ocean, run and sweat, wear makeup and perfumes, and revel in the softness of silk of chenille! I know you will arrive at this place too and will be utterly overwhelmed with peace and relief if you can only survive this. It's okay if you don't do it perfectly or know exactly to be really good at being chronically ill, but if you can just live through it, you will be met with an answered prayer. And that feeling will come back over and over again in simple and quiet ways, like some future day when you dip your hands into a cold stream to splash your face. And I know that day is not here now, and so this distant fantasy might come across as empty words. So, if I can offer you one thing now, it's the recognition of the indestructible light within you. If you cannot have physical ease, then I pray you have peace from knowing you are strong and you are loved and you WILL endure!! All my best Amy. -Amanda
Beautiful words ❤. Love from a TSW caregiver
I had TSW. As a mother in my 30s with a full time job, I couldn’t ride it out. Never suffered with my mental health before but honestly wanted to die. I’ve never experienced pain like this and pray to God I never will again! I took methotrexate and I’ve been clear two and a half years 🙌
I really feel for this lady😢 I don’t have eczema, but I have severe psoriasis and it’s very similar and debilitating. Sending love to everyone who is suffering, stay strong💪🏼
The pain of a doctor telling you steroids are "your only option" is unbearable when you know tsw exists. The fear of being stuck between steroids and uncontrollable pain with no offered alternative is heartbreaking and it's amazing to see people speak about it publicly 💕
My heart truly goes out to people suffering with this debilitating condition. One of my children suddenly broke out when he was only 4/5 months old and thankfully grew out of it but there was a period of a few months before we got referred to the children’s allergy clinic when he would scratch so badly he would bleed, sleep was disturbed etc it was so awful.
It's amazing to see this... like this woman, iv been using topical steroids all my life... stopped using them in January this year... my skin has been constantly itching oozing and stinging and I haven't been able to sleep consistently for months... as the dr said i am of those who cant use my emollients as they sting to wash even stings..I can't even wear underwear and have to wear very light clothing.. so I went no moisturise and changed my diet ... low hystamine, hi protein diet, no dairy diet...drink lots of turmeric tea with vit a c b12 b5 and 6 and vit d.. now my skin although still very itchy has calmed down alot...it now wants oils as it has become very dry...it's hard but I would never go back to that poison of topical steroid.... the pharmaceutical industry need suing as far as I'm concerned.. Dr's need to look in to holistic therapies that they've been opposed to for all these years they will find some answers there...
This brave girl speaks for many. Dermatologists listen and listen closely .
Amy I am in the exact same boat as you. I'm 21 diagnosed with Severe Widespread Eczema. I've been on dupixent for a few months and it's been better but it's still nowhere near perfect. I empathise with you so so so so much. Thank you for representing our community with such bravery ❤
this info needs to be in every waiting room of every doctors office and dermatologist in the uk
i’ve had eczema since birth too, it’s getting better now, im 22 and focused on my diet or triggers and have started training at the gym. my skin has never been better.
you need to figure out the triggers and work round them. I really feel for her, i know exactly how she feels, I was at the lowest points of my life when mine was bad.
For me it has been 7 years. Everything is fully healed except my hands. I am in agony. My hands are very cracked open and it keeps me from doing stuff around the house so you can imagine how hard it is for me at work. I have to believe that it will get better.
@kerabubble Try calendula cream or tincture for bathing your hands in, it healed all my cracked fingers/hands.
For those doctors who have always given me topical steroid creams and laughed in my face when I told them I'm in TSW and I don't want any steroid, they should be re-educated!
It’s honestly a joke. They say that the cream should be applied for the short term, no more than 2-4 weeks, but when you tell them that you’ve been using for months/years it’s a disgraceful contradiction to they tell you to keep using!
Yup let them learn to unlearn.
I have been suffering with atopic eczema so good to have this on here
Great program My daughter in law suffers terribly with this condition and it's so good to see it's getting g some recognition thank you
My sibling is suffering from a severe case of eczema that has covered his entire body, leading to immense physical discomfort and greatly impacting his mental health and overall well-being. We are feeling helpless and are reaching out for any help and advice that can alleviate his condition.
I suffer from the same extreme condition. I’ve been on steroids, tried light therapy(UV and red light) and many medications. Most did not work well; however, I am on a new medication, a biweekly injection called Adtralza for the last six months. Most relief I’ve had in years. It’s a horrible condition and I wouldn’t wish it on anyone. All the best to your sibling in their fight to get better💚
I’ve been through this over the past year and it’s completely soul destroying. Was sent to 2 specialists who tried to prescribe me more steroids. It was an experienced nurse who listened and understood. Ended up having UV light therapy which was pretty good. Not out the woods yet. Just know that there are others out there that are also suffering. You are not alone.
How’re you getting on now? I tried UV but it didn’t work for me. I’ve made much better progress since quitting alcohol and sugar.
@@robertthomas1154 I’m still in the healing phase but way better. Yes quitting alcohol works. I found if I had 1 drink my skin would burn. Very odd. But must be due to dilation of blood vessels. Sorry UV Didn’t work out. Are you going to try any other methods?
@@FizzWizard congrats for getting better. It’s a long journey. I live in China so I’ve tried various traditional medicines here. Acupuncture helped but I really hated the needles. I bought “The eczema diet” book a year ago, I’m glad I did, following the instructions helped a lot too.
It’s so nice to finally see a dermatologist/doctor from the industry finally recognising the realisation of us who suffer with TSW and eczema itself!
I suffered with this 3 years ago and still have my flare ups at seasonal peaks of the year - seen doctors, dermatologists and nothing seems to work for the long haul.
Much better than I was, I couldn’t even put water on my face/body as the pain was so severe and awful I would scream.
My child suffered exzema and they pushed steroids and I said no. His evzema is gone but there are food issues - food allergies that lead to exczema. It is a gut issue, address gut problems and you will cure it. It is not skin issue, its a gut.
I was on steroids for a week and I looked like a hot mess. I was so bloated and swollen. It only masked my symptoms and once I got off the steroids my symptoms came right back in full force. Never again will I agree on taking steroids.
I dealt with this two years ago, worst thing that ever happened, I'm totally healed now. I used to put on topical mometasonefuroate on my lips every 3 days for 6 years straight, when I came of from it, it came with a severe vengeance of lips being swollen, kracking bleeding and shedding for 3 months, also got eczema on places I never had before never in my life ever again
Prescription steroids are the first medication doctors go to. Steroids have to be used so carefully and minimally. When your skin breaks down like this it leaves you so vulnerable to infection. Eczema is so personal to the person, as what suits one doesn’t suit another. Speaking as an eczema sufferer and parent of a child diagnosed with acute eczema at age 4 months. I find diet is very important, sleep, keeping healthy, natural fibres, non scented cleansers, natural products and recently no gluten or lactose. As I say everyone is different and I am so sorry Amy and others are experiencing TSW.
I’m going through this now and I know people say to use dry therapy not washing or drinking much water, just letting your skin dry out but this is what makes the itching worse and your skin is trying to detox from the cortisone. I made up a tallow cream adding frankincense essential oil and it has been a lifesaver. My skin is still inflamed but it is bearable. I can sleep and the itching is significantly decreased. There are many UA-cam tutorials on making this natural cream. It doesn’t hurt to apply at all. Because the beef tallow is similar in makeup to our own skin it works wonders. I buy suet from grass fed cows from my butcher and they mince it for me. It is very cheap to buy. I render down 1 cup suet in a heavy based
pan on the stove on lowest heat.
Then add 1/4 cup avocado oil then add 15 drops pure frankincense essential oil
Hi, do you follow the non washing therapy?
My eczema improves when I eat a strong probiotic like Cocoyo yogurt. I'm definitely allergic to even the tiniest trace of black mold on the skin of onions, even if the skin is peeled off. Eating lots of cocoyo suppresses the eczema response. Good luck to everyone. Following an anti inflammatory diet helps as well to control the eczema.
also going through it for 42months now.. still oozing on my chest & neck
Been on severe eczema and topical steriod withrawal myself for 9 mos and now I am clear. Frustrated from all my dermatologists I had to go to a functional doctor. must say I had to fix my leaky gut to heal from the inside. having grain free anti inflammatory low-carb and high protein diet, exercise, daily morning walks, and supplements like probiotics,digestive enzyme, zinc, fish oil, turmeric, glutamine has worked for me tremendously. Going to a functional doctor who knows about leaky gut and tsw will definitely help fix it.
I suffered this for 3 and half years after total cessation of steroid creams , my god , living torture , my dermatology put me on dupilimab, saved my life literally 😢❤
I have been suffering with the same for 30 years on and off. And only within the last few years was it at its worst. I stopped using steriods for a number of years now, but i do get waves of withdrawals, right now i am at my worst so i hope things get better.
@@MrWozOSRS did they get better? What helped?
Most of my eczema and spots cleared up once I gave up dairy 👍
Dairy has huge links with skin conditions.
Diet does absolutely. I had it since a child where my skin would itch and split on my hands and knees especially. As a little girl, a boy called me "alligator skin". But my parents fought hard for me from UV lights to taking me to salt water beaches to steroid creams. Diet was improved when I got older and I really watched eating around my triggers. I can have diary now where I couldn't back then. But food and some seasonal allergies still remain. God has just helped me be free from the more heavier part of it.
I’m sorry to hear about this experience - I have atopic dermatitis and that alone is exhausting: even when the skin isn’t ‘flared’, it’s incessantly dry and sensitive. Topical steroids work but as soon as they’re stopped, it starts coming back and then it’s another month of watching your skin flare before allowed to start steroids again. I don’t feel safe in the hands of dermatologists (my referral wait time is a year long), but I dearly hope all who suffer with it start receiving better, more empathetic treatment soon, with higher quality emollients available on the NHS (eczema can be EXPENSIVE!)
My son had eczema shortly after he was born , one midwife thought it was a heat rash but advised to make a doctors appointment , year later 2009 i ended up with eczema
Finally they recognize it, I went through tsw a year ago. 99% recovery
@MariiaMykhailova-r3k please share your healing process ❤
Great to see, all the best Amy. Shout out to this Doc 🤝
💯this happened to me.. tsw is a million times worse than my eczema ever was.. and after tsw I now live with constant anxiety that I never had before and my immune system hasn’t been the same either
I think it's absolutely so important that this doctor acknowledges that there is a problem with steroid use. It's wonderful to see. However, I lost him on the last part where he said the vast majority of people do fine with longer term use. This is very misleading. He needs to learn the piece from Dr. Rapaport about 2 weeks of use. These drugs are so strong now that addiction can happen to anyone. I am definitely addicted to these drugs. Over 20 years ago I was going to the GP (of all things) about every 2 weeks and ended up with stronger and stronger stuff. If that doesn't fit the definition of addiction than I don't know ☹That's the hardest piece of the puzzle of this condition, unfortunately- the addiction
Brave amy 👏 we will get recognition we deserve
Thank you This Morning for raising awareness of TSW. I'm 8 years in and still have flares. Steroid creams are not a long term solution for skin problems.
My heart goes out to you. It's awful.
Just read an article of a girl who suffered from Topical Steroid Withdrawal symptoms and got better after using the 'no moisture treatment': no use of a moisturiser, a few cool showers a week, moderate exercise, and reduced water intake
Thank God, her skin started healing some weeks after.
It’s so unfair that some people suffer with this. I know so many people who have this and it’s just horrible. It must be awful to be massively itchy and sore all the time. Steroid cream is so harsh for the skin, no wonder it inflames already inflamed eczema skin 😢I hope this woman’s skin improves, it’s just so unfair
I am with you. I have the same condition. It's extremely painful and it affects all aspects of life.
I have seen some serious cases like Amy's on TV and YT lately. I can't imagine how terrible their situation is. I have eczema that is 5-10% of what they have, but even that is terrible. Doctors have to educate themselves in waiting for better medical treatment.
This is recognized as a decease in Japan, UK and Australia, dermatalogist aren't speaking enough. Dr. Marvin Rappaport has been treating this desease for many many years and even he says that doctors in general don't treat it right or omit the root cause.
Really feel for anyone who suffers from this, it’s a horrendous condition. I myself have had eczema on and off since a young age and have used ointments and creams too, not understanding that it’s a gut imbalance. I have found avoiding dairy, gluten and sugar has really helped my skin. I can’t recommend a good nutritionist enough to help with this. Agree with others here, functional medicine route is the way to go. Please do see a nutritionist or kinesiologist, it will really help you. I pray you will get better 😢
I believe my son is suffering TSW, after been prescribed steroid creams from the age of 9 months to age 16, he was also prescribed protopic as well, which I also thinks adds to suffering.
Topical steroids withdrawal is very real and fairly common when coming off steroid creams.
Best thing to do is go down the natural remedy route. Personally I found Ayurvedic treatments work best for me.
Brave lady. As a lifelong eczema sufferer I can empathise.
Dupixent changed my life with this.
Working with private lab testing under the guidance and support of a naturopathic or functional medicine provider is KEY. Don't treat the symptoms - address the root cause.
I am now 2 years and 2 months with TSW. I am under the care of Dr. Rapaport and from reading all his work and studies, he has always said that eczema usually wears off at a certain point, but eczema does not burn and itch as bad as going through TSW. I'm in California and my general doctor and dermatologist does not want to recognize my condition. I've been through a whole lot and testings that they gave me and it was on my own when I found out that I was suffering with TSW. It's a serious condition and nothing can be done but hand holding and maybe a sleeping med and a medication for itch, but that's it. Just have to go through the motion.
I have been incredibly irritated at the medical profession not acknowledging steroid withdrawal and there isn't enough research on it either. Its pathetic really meanwhile so many people suffer with it. Madness!!
Changing your diet and removing milk protein containing products is very helpful.
I think they are not aware that it is even more dangerous. The don’t have a clue about the actual results of tsw. Most people find out and never go to a dermatologist in their life and don’t talk about it. They probably put that in the statistics as a persons that was cured.
going through it right now. sooo painful :( i just want to be okay
I've experienced something similar on my hands. I stopped the steroid cream and did my own research and bought a cream from Eucerin that actually helped. Steroid gave me a reaction and I'd still itch and have disturbed sleep, and swelling, cracked hands. Very sore and painful! Thank you for raising awareness. Steroids are not a long term solution
What about gut health? Probiotics? Kefir ? Chuckling goat has amazing kefir. Start with a teaspoon a day only increase if you can tolerate. They do lotions as well and super sensitive skin balm which is amazing
Homeopathy was the answer for me, please try it. I struggled for over 20 years. I tried creams, steroids, different foods, avoided foods etc and I tried homeopathy and it changed my life. It’s an alternative medicine and encourages the body to heal itself
Same I tried all steroids for 2 years mine go worse and started spreading then stated homeopathy that help still taking …..
I'm going through it now and it's very difficult
You got this! 💪 It's been a year for me. Your skin will get better.
Doctors should suggest more natural methods for slight eczema patches first before it gets worse. Such as applying a combination of oatmeal, eurucin, honey, aloe vera, and etc. Consuming magnesium, fish oil, and vitamin c supplements helps with the pain and bleeding/freezing. There should be more investigations into supplements/ natural topical appliants rather than steroids. Try all flowers/plant species and compare if needed. Rather than going straight for a steroid application.
I'm wondering if something in the ingredients in these steroids changed in recent years. I used them off and on but never had these type of reactions until I was an adult. We know consistent steroid usage over long periods of time isn't good but these companies are cutting corners more and more for larger profit.
I have been battling eczema since we came out of the pandemic and managing it is so difficult at times it really brings you down and there is just no cure for it, steroids are not a long term fix there needs to be more done to help people suffering with this
Thank you - Scabb
Try being a canadain with a 9 month wait list for a dermatologist.
I had this condition for 4 years and it is like being dead in life, I can say that I am cured today. It is an experience of learning and love.
How did you manage to cure it; I’ve got it on my face sadly
I used daktacort cream 2% from my doc for ringworm, got rid of the ringworm rash and now my tsw is worse red sare and oozing. Where ever I put the cream 😡
Try taking mineral oil. My father had firery eczema and for about 3 straight years he lost so much weight... Was always freezing cold... Itching and flaking all over the place. Fortunately his face was about the only part that was not effected. He started taking mineral oil every day and his skin cleared right up. It took a couple months before the skin started to feel soft again.. But the extreme itching and pain noticeably diminished within a few days.
Removing gluten from my diet is a life changer. Removing dairy and sugar will also help. Read up about the gut microbiome. I highly recommend Metagenics Vitamin D3 5000 to 10 000 international units per day is also a game changer. 10 000 international units use on a temporary basis
Total agree
Diet is not always going to be the answer. And what helps one person is not going to help everyone. Amy, the woman in this video, stated she has celiac disease… so she never eats gluten anyway.
@@abbyk9774 but the likelihood that she has replaced the gluten with so-called "Free From" products filled with preservatives, refined maize, stabilisers, preservatives, SOY and other junk is very high. The fact that they didn't even MENTION her diet is crazy.
@@minionsgamespuzzles So true!!
While I agree with the statement of examining the gut microbiome, each person's diet and nutrient response is different. We have to be very careful about encouraging people to take out foods because it contributes to food fear, eating disorders, and unnecessary allergy response. I've personally benefitted from removing gluten, dairy, soy, and egg, along with some other things, but I don't think that needs to be the case for most people. A person should only take supplements based on their blood work and having it reviewed by a qualified provider, as it can be unhelpful if you take something because it sounds like a good idea and have no idea where your baseline is. Another big angle of this is the health of the liver (which steroids do have a signficant impact on), and the pH balance of the stomach acid. Jennifer Fugo's "The Healthy Skin Show" on UA-cam is a great resource for those interested in exploring more the root causes of skin rashes.
Also make sure to check if your intolerant to any food as that is a main cause. I had issues with severe excema Milk, Sugar and Yeast was the cause. In regards to Meds. Cyclospolorine is a good for for a couple of years. Dupixent injection might help but again look at what food you might be intolerant on
Why has she not tried Dupixent?
I can’t speak for her of course, but many of us who have been harmed by medications, as is the case with topical steroid withdrawal, are understandably fearful of turning to other medications to solve the problem, especially as there is currently no research into effective treatments for TSW.
Dupixent has its own bad side effects
Dupixent is the best thing that ever happened to me, it's so freeing knowing something finally works, I had severe atopic eczema all my life , in and out of hospital all the time and dupixent was an absolute godsend when I got put on it the second it was available
Dupixent messed up my daughter's skin around her eyes horribly and she still hasn't recovered completely a year later after being off of it.
@@QuintilliousI’m glad to hear it helped you, and am sorry for the horrible experience you had to go through before finding it. May I ask how your skin is doing now while on the medication? Does it still dry up lots every day or get red?
I dont have ezcema 😭😭😭 what i have now is topical steriod wiyhdrawl😭😭😭😭
I got dermititis put on different moisturisers for ages made it worse leave it alone helps more
Hanna sillitoe Multi strain Biotic works well. You have to start with improving gut health. Its cleared my daughter's eczema.
Used hydrocortizon for about a month - disaster my fore arms were "scared" from sunburn in S African beaches so used about 4 tubes of Hydrocortizon over a month, big mistake now after about a week without my skin is just getting back to normal thickness,
I'm scared of steroids for life, OTC and prescription. 😂
I had this then started using over the counter cera ve and never looked back. Wasted 3 years listening to doctors who gave me steroid cream that ruined my skin.
I wonder if red light therapy would help
Tried it, it didn't help my daughter
Please try a cream called Kailash Jeevan. Not a quick fix but a couple of weeks and you can see the change
I mix glutamine powder with coconut milk or water and Chua seeds and I feel much better.
Say no to prossess oils only olive and rapseed oil
Could it be diet? Perhaps eliminate some foods? Go on a fast could help.
l don't understand, the person has a chronic problem and has to stay without taking medication withot doing anything?
AMY sweetheart. How about asking DR VIVEK JOSHI (with over 2Mil subscribers) whether his DIY Fermented Rice Water would help? 🤔🤔 He has JUST uploaded the most simple NO FUSS NO COOKING etc. recipe on his channel.
i have eczema and acne..
Look at Demodex Folliculorem as a potential irritant. I used Ivermectin to control it. Ivermectin works well on parasitic infections. The inflammation Demodex cause is when they die off. Killing all of them within a month caused a great flare up of symptoms, then my face cleared up. Opthalmalogists are a great resource on Demodex, as they tend to colonize eyelash follicles early on.
This doc is cool but he’s bugging. Look you don’t treat eczema with creams. You treat it with diet, fixing gut microbiome or avoiding allergens. Prior to the 60s they didn’t use cream.
i sparingly use steroid cream. Diet plays a major roll. Cut the dairy maybe go on the carnivore diet, gut health is the key.
I wish they'd say how much of it she used. Daily? You're supposed to go on and off of it and not use it to constantly use it to repair the skin
Zoe bee beauty. Can you help this lady? X
I wonder if a laser or a chemical would work?
The clues and answers lie with the patients. Doctors: please believe your patients!!!
Blackcurrant seed oil helped my eczema a lot, nearly dissappeared.
Doctors don’t like you questioning their diagnosis as they want to appear as the most intelligent when root cause analysis would be more beneficial. Way more needs to be done around stool sample analysis and gut health.
You have to withdraw from drinking and smoking and eat healthly it starts within.
😢
Not being funny but drinking more water and Hydromol cured my severe eczema. I stopped all steroid treatment and avoided my allergies.
Calendula flower natural for eczema