My heart broke when I saw the pain in that woman’s eyes. Thank you for recognizing not only the disease itself, but how people are emotionally and physically affected by this. ❤️
Oh my goodness.. I had this for 2 1/2 years. The absolute worst pain of my life. It's so, SO good to see a dermatologist acknowledging this bc the majority of skin doctors DON'T. It's so frustrating to be gaslit by dermatologists when you're suffering so much. Thank you for raising awareness and acknowledging us.
Wow this is amazing. Thank you for bringing this to light. So many doctors just accept people ending up housebound as an acceptable outcome. These people deserve better. Well done Dr.
This is good information to know. I suffer with eczema really bad on my hands and feet. I have tried topical steroids but just did not want to continue them. My heart hurts for those that suffer from topical steroid withdrawal. It looks painful and I am glad something is on the horizon them.
Thank you so much for acknowledging TSW and raising awareness! I developed TSW after 30 years of steroid use for eczema, and was homebound for almost a year. It was the worst thing I have ever been through, and at the time no one could figure out what was wrong with me. I am now 2 years steroid free and have my life back!
Guys, I am going through it right now. I am so terrified and lost. Please, say, do you have a full remission and what was your medical treatment like? Sorry for my English, I am not a native speaker.
@kayblock8009 Let's hope for the best, stupid steroids, I wish somebody had told me about the consequences before it was too late. Uf. Everything is gonna be ok, we'll make it
You guys can and will make it. I made it through. Several times i just wanted to die cus i had no life and the pain was so high. Cant go out in public cant shower, flakes all over, oozing wounds, depression. Yea its so bad, but do whats in front of you and then do the next thing. U can make it
THANK YOU FOR ACKNOWLEDGING US!! We need more doctors to just simply agree and understand that no one properly knows yet. Too many people are suffering now, wether that being still on steroid creams or withdrawing.
The why is known. Topical steroids have a binding affinity of up to 600x that of cortisol and the dose is instant on a very small area of the body, say 3mg, as opposed to 1mg (of the 600x weaker cortisol) released systemically over 24hrs. The result is that glucocorticoid receptors are reduced by as much as 90% and blood vessels dilate uncontrollably upon ceasing the steroids. The endogenous production of the much weaker and small amount of cortisol cannot dampen any inflammatory response in the area that topical steroids have been applied, nor can they constrict the blood vessels. All cells have glucocorticoid receptors and 20% of genes are influenced by the receptor. Topical steroids should be banned for skin conditions in my opinion as 20% of children now have "eczema" and it is only increasing since steroids hit the market in the 60's and became much stronger in the 2000's. The strongest that should ever have been made and applied should have been 1:1 binding affinity with cortisol. Medical industry is in shambles in the current year.
This makes the most amount of sense with the research I’ve done too. It’s why giving it time is what usually works for people. I personally am not messing around with any more pharmaceuticals for skin issues unless it’s an emergency. If they “can’t explain” the phenomenon that’s happening to so many people, why on earth would a trust another drug?
OMG you are the best Dr. Idriss! Can’t believe you are talking about this topic! I’ve never had eczema and I personally went through TSW because of a mistreatment of an allergic reaction I had postpartum. I only used mild TS on and off on my face for 2 months and I had TSW after, only on my face. One of worst things I’ve ever been through that’s for sure. I had postpartum depression during that time and one of the side effects of TSW is depression. So it worsened my ppd during that time. Even now 1 y 4 months TSW I’m still experiencing mini flares but it’s so much better than before.
Because many dermatologist start talking about TSW. Before all quiet. Off course need have propaganda of new miracle drug like Dupixent. It's really not work for TSW. Time is working.
Thank you for addressing this issue. My daughter has TSW. She was on Dupixent but had to stop due to side effects. Traditional dermatologists have not been able to help her so she's trying a more holistic approach.
@@darkflower9090 She stopped using any kind of steroid or non-steroid drug for eczema to get them out of her system. She went to an allergist for tests to see what she's allergic to so she could avoid those potential triggers. She joined Facebook support groups for people with eczema and TSW. Right now she's seeing an acupuncturist, who she feels is helping. She uses ointments like Vaseline rather than creams or lotions, avoids any products with fragrance or essential oils, and takes an antihistamine like Benadryl for itching. She is careful about what she eats. It is a slow process with a lot of trial and error to see what helps and what doesn't.
I have TSW, I am part of a lot of TSW support groups. The problem is that when you stop taking dupixent, you will also have withdrawals and experience all the symptoms of TSW again. It’s a Band-Aid for the problem, not a solution. As someone who has suffered with TSW for nearly three years now, I can understand the desperation. The medical and pharmaceutical companies are not being held responsible for the damage that these over the counter creams are causing.
This ^^^ I went through TSW and am fortunately healed. I still have some atopic dermatitis (that was present before i went on topical steroids). But I was in all the TSW forums and everyone said what you just said. Depixent helps but then you flare again when you stop taking it. It doesn't cure or heal the underlying issues with TSW, it just suppresses symptoms, just like the steroids were doing before that.
Thank you so much for posting this - it is so great to finally see a medical professional acknowledging the existence of this condition rather than denying it because they can't explain it (due to lack or research - as you mentioned).
Dupilumab is having amazing results for many patient - in the UK two more drugs in the same group have also been licensed which will mean more people can benefit.
Thank you for helping spreading awareness. I am going through TSW and also on Dupixent. It is helping me, although I still have some of the systemic TSW symptoms. It definitely has made life more livable though.
Topical steroid withdrawal can be caused by OTC topical steroids too. I used it on my face for a long period of time and am suffering the consequences, two years post using them. Also a lot of us in the United States can’t afford dupixent unless we have good insurance. I really wish there was something that could help everyone going through this.
My thing is, how can I trust any dermatologists they are are the people who prescribed this nightmare medication to me. Nobody told me 35 years ago. This could happen to me it’s a living. Hell no person should have to go through this.
Yep this happened to me… thanks to a pcp who prescribed topical steroids for a “rash” on my face. Getting off the steroid was a horrible experience and took months of antibiotics and years to recover. I now have rosacea. Please please please always go to a dermatologist for skin concerns. Had I done so, I wouldn’t have gone through that horrible experience.
Omg I think we went through the EXACT same thing! Same symptoms! I’ve never had eczema before and got proscribed TS by a derm for an allergic reaction on my face. I put it on and off for 2 months and stopped for good. I recovered the worst phase myself now I’m 1 y 4 months TSW, I have mild to moderate rosacea like flares sometimes on my face. Some people in the TSW community said it’s just a TSW flare but I don’t know…..
Ruby mars I am 11 months out of steroid. Had acne due to mask and dr gave me ST and I ended up in this condition. I am very upset with my self for using that cream that was doing more harm than good. I want this to get over and get my life back. How can I connect with you?
This can also happen with topical immunosuppressants like tacrolimus. A lot of dermatologists are prescribing topical immunosuppressants now instead of topical steroids. This is not the answer. Just like topical steroids, your body will become dependent on the immunosuppressant, it will become less effective, and you most likely will withdrawal from it just like a topical steroid. I don't really know much about Dupixent, but I would be weary of being on any drug for an indefinite amount of time. I'm not a doctor, but I have had TSW from tacrolimus, so I'm skeptical of any drug now. Just do your research before committing to being on a medication for the rest of your life. I think dependency, declining effectiveness, and withdrawal can come from just about any drug.
Thank you so much for bringing up this topic. Im currently going through this phase of my life after using cortisone for over 4 years for my eczema. My tip is to take constant warm showers. Like 3 showers a day. It sounds like a lot but it definitely helped me. Put on a moisturizer then a ton of Vaseline. Ive seen ton of improvement in about 2 weeks.
It happened to me 2 years ago and ever since everything dr Idriss mentioned (minus disability plus pigmentation). I think the most difficult moment was when it reached eyelids and blinking hurt.
I've had this condition. JAK inhibitors are coming out on market and worked better for me than Dupilumab. Cibinqo is the drug I used that works better than Dupilumab. I was on a clinical trial for both in a double blind study, and dupixent worked for me for about 6-8 weeks before reverting back to TSW. It is a biologic so your body can get used to it or fight it. Also 30% of patients have allergic conjunctivitis that take dupilumab which I did. Cibinqo was just FDA approved and an oral pill once a day vs biweekly injections from Dupilumab and less side effects with greater efficacy. Research and take with your doctor's recommendation.
I always come back to you please help my son has steroid cream withdrawals. What is the name of the cream you mentioned could you show a picture of it .
I had TSW. It was so bad that it lasted 3-4 years and the reason why it went away is because I was one of the test trial for the dupixnt or people call it dupilumab. I was taking the risk and danger of injecting myself with a trial medicine so that my TSW could be cured. Let me tell you that it worked.
Thanks so much for this intro. I’m on Mometasome 0.1% for my scalp and my doctor says I can use it indefinitely. Do I risk steroid withdrawal? I’m a little worried
I have used Synalar for four weeks. two weeks 2x a day, 2 weeks once a day. My dermatologist told me there was no risk of me overusing it but i do see an area thats red on scalp now.
Yes. I have had this experience. It was awful. 5 months of antibiotics to get rid of it. My best skincare friends during this time were Avene and La Roche Posay products. It was worth getting to the other side. 😊
also, sorry to bother you. what antibiotic did you use? did you stop using steroids immediately or did you gradually stop using it?(if yes, please a guide). thanks. I just noticed symptoms and I’m really going through it right now.
Thank you for acknowledging TSW My partner has been going through TSW the past 6 months and it breaks my heart seeing him suffer, I wish I could take it away from him and go through it myself instead 😢 Does moving to a warmer climate help?
I've been there...its so painful that we can loose our mind...but we have to get through that because stay with steroids does not the answer to heal..after 4 years i still hv flare up hefe and there but not so much pain anymore...time only the thruth healer...depwnda on the body and our mind..thats all..the sufferer has to love themself to get through this...and its all worth it
I’m on Dupixent and I was very bad. I will never stop taking it. No scratch. Little really no flares . Slowly everything resurfaces. The skin is the first thing to change is the skin
I worry about this for my young child with eczema. The derm dismissed TSW as a concern, but we use it on his eczema patches every few days. Is this something I should be more concerned about? Eczema causes him to suffer, too, so it’s a hard spot to be in.
All I know is that I used OTC hydrocortisone on my son one week on and one week off as prescribed by his doctor and he ended up with TSW and I think he was showing signs a few months into doing that but we didn't realize until almost a year into using steroids and by that point we were using stronger stuff because the hydrocortisone stopped working. Not everyone will develop TSW but I can tell you the warning signs I wish I had listened to. Every time we used the steroid cream the rash would come back and it started coming back worse then before and spreading to new areas after treatment, while this was happening the steroids were becoming less and less effective at clearing him, stepping up steroid doses or using them more often or for longer seem to work for the first couple treatment cycles but the same thing would happen and the steroids would be less and less effective the more we used it, eventually they stopped working and didn't clear him hardly at all. Then we stopped using them and he a bright red, full body rash and had TSW symptoms like unable to regulate body temperature and nerve pain. Also his growth had slowed down and then stopped while we were still using the steroids and he was dropping many percentiles which was another warning signs of TSW.
Please consider finding the root problem that causes the ezcema. Using the topical steroid is just a temporary plaster and you'll just keep using it. X
14 months after the start of my tsw. Use it on my neck off and on for 6 months. Cleared up about 80.% after more than a year . I recently got an ear infection. The drops had riods in them , after 14 months of hell I'm back to square 1 FML
I thankfully recovered from TSW (used topical steroids for 15+ years from my PCP and was stopped as soon as a derm saw my skin about 10 years ago now) but have permanently red skin and noticeable skin atrophy. In case this helps anyone, skin patch testing can help with avoiding your triggers of eczema flares and help your skin barrier to recover (why did no one suggest this to me until my thirties?!). This kept my skin clear until the crazy flare that ended with me taking dupixent two years ago. There are support groups on facebook for both TSW and for dupixent, and they are both generous with information. I wish I'd found those groups before taking dupixent so I'd made a more informed decision about possible side effects (my doctor brushed those off and it's certainly true than many people don't have any, but I tend to get rare side effects from any medication I take, which I was very up front about). I wanted to make an informed decision about what I was getting into, and even called the folks at dupixent and asked for results of their clinical trials, but the drug was just too new then. Unfortunately dupixent was not for me -- it cleared my eczema but also resulted in hair loss, a strange fungal rash on my face, an eye gland disease, and uncovering of underlying joint hypermobility -- and I found the facebook group after I took the medication. This is not to say dupixent doesn't work wonders for some, and technically it did for me too, but if you're already feeling horrible and used to dealing with one issue, swapping it for something else can also be really difficult emotionally.
Doesn't just have to be topical..if you misuse steriod cream and then take oral steriod, this can worsen your condition. This goes for eye, ear, and inhalers with CORTICOSTERIODS. I was 1 year in to tsw recovering 90% i got and ear infection. The drops had antibiotics and dexamethasone in them..48 hours later, my face was extremely swollen (my neck disappeared) and peeling. I had zero chin. It had given me red sleeves which I never had with my first go round with tsw. Dr. Rapport has said that if you use topical wrong or for too long first... the corticosteroids will set you back. For me its been far worse than the first go round.
I remember my dermatologist told me to just stop scratching, and would prescribe me more cream with instructions to use sparingly. I got rid of him. My new Dr got me dupixent, it worked great, but then insurance wouldn't cover it because it is over $10,000 a year.
Does it affect all the body or only the areas where the patient applied topical steroid for a long period of time? I have so many questions I wish that you dedicated a specific video about this phenomenon. How long does it last? What are the treatments? What can people do to prevent it ? What are the symptoms? etc
No it doesn't only affect the areas where you used steroids it can spread to your entire body. Withdrawal symptoms can last for a year or more. My son when through TSW at 18 months old and now three years later he is completely clear except for a few small ezcema patches. From what I can see being in a support group for TSW the most popular treatments are no moisture treatment, traditional Chinese medicine, homeopathy, sometimes immune suppressants, or the drug she talked about here. Then some people heal with nothing but moisturizers and time or other various treatments like dead sea salt baths, special diets, or light therapy.
I would like to know as well. I used a middle strength steroids on my cheeks and since the day after I have a very tight and uncomfortable feeling at my upper cheek. I can’t even laugh or smile now without feeling discomfort there. I wonder if I have TSW.
Doctor it's good you are honest and saying many don't know why this is occuring. However, Honestly I've been reading up on much research studies it says the herbal creams work best for skin issues.
Wow, sounds like this can trigger ME/CFS, which is a nightmare of an illness (and eliminates your life). Thank you very much for bringing this up, good reason to avoid topical steroids as much as possible and be mindful for those of us with eczema!
It's supposed tp be for short term use. That's why they keep prescribing ot month after month, year after year. 'It could thin your skin' is all we're told. 💀👿💀
How sad that doctors who are supposed to have to have their patients best interests in mind can be sponsored into putting patients on one drug or another. Thanks for sharing this new drug. I wish all medical advice was to help people not make mega money.
not just long term, I used steroids (momentasone) for one week -in my face- and I suffered a hard topical steroid withdrawal, it was incredibly horrible. 💔😭 I had all the symptoms. my skin looked awful and I was devastated, so much pain, itching and flaky skin. I’ve never before was suffer something like that.
I’m in the same situation. I’ve used it on my cheeks for one week due to redness and itching. I’ve used it 7 days in the last 10 days. My skin hasn’t healed but I want to stop anyway because I’m terrified of this. Have you recovered ?
Hi doctor! I saw in a previous video you recommended a retinol eye cream. I’ve read retinol can permanently affect eye lubricating glands that help to keep our eyeballs moisturized. What are your thoughts?
I was a long-term user (35 years) and the answer to that is that they stop working and we become addicted to them. My body didn't give me a choice at the end
Do Dermatologists routinely address nutrition? See Dr Ken Berry’s channel, Dr Shawn Baker, Dr. Anthony Chaffee, Dr. Bright, Dr. Robert Kiltz. Prevention and reversing skin conditions with food rather than steroids sure sounds safer
They do not because there is not enough research supporting it yet, besides just “eating well.” There is no hard and fast rules for eczema because it is a combo of genetics and environment
Oh my gosh, I use Betamethasone for Grover dz - not every day but, maybe one or twice a week now. Have you done any videos for Grover dz? How common is it?
My heart broke when I saw the pain in that woman’s eyes. Thank you for recognizing not only the disease itself, but how people are emotionally and physically affected by this. ❤️
Oh my goodness.. I had this for 2 1/2 years. The absolute worst pain of my life. It's so, SO good to see a dermatologist acknowledging this bc the majority of skin doctors DON'T. It's so frustrating to be gaslit by dermatologists when you're suffering so much.
Thank you for raising awareness and acknowledging us.
How did you heal???
Wow this is amazing. Thank you for bringing this to light. So many doctors just accept people ending up housebound as an acceptable outcome. These people deserve better. Well done Dr.
This is good information to know. I suffer with eczema really bad on my hands and feet. I have tried topical steroids but just did not want to continue them. My heart hurts for those that suffer from topical steroid withdrawal. It looks painful and I am glad something is on the horizon them.
Thank you so much for acknowledging TSW and raising awareness! I developed TSW after 30 years of steroid use for eczema, and was homebound for almost a year. It was the worst thing I have ever been through, and at the time no one could figure out what was wrong with me. I am now 2 years steroid free and have my life back!
I used it for 3 years. It took me 6 months to leave my house. This is the worst thing I've ever experienced
Guys, I am going through it right now. I am so terrified and lost. Please, say, do you have a full remission and what was your medical treatment like? Sorry for my English, I am not a native speaker.
@@YourGrannyLolI’m going thru it too! Week 6! I am not mentally ok
@kayblock8009 Let's hope for the best, stupid steroids, I wish somebody had told me about the consequences before it was too late. Uf. Everything is gonna be ok, we'll make it
You guys can and will make it. I made it through. Several times i just wanted to die cus i had no life and the pain was so high. Cant go out in public cant shower, flakes all over, oozing wounds, depression. Yea its so bad, but do whats in front of you and then do the next thing. U can make it
THANK YOU FOR ACKNOWLEDGING US!! We need more doctors to just simply agree and understand that no one properly knows yet. Too many people are suffering now, wether that being still on steroid creams or withdrawing.
The why is known. Topical steroids have a binding affinity of up to 600x that of cortisol and the dose is instant on a very small area of the body, say 3mg, as opposed to 1mg (of the 600x weaker cortisol) released systemically over 24hrs. The result is that glucocorticoid receptors are reduced by as much as 90% and blood vessels dilate uncontrollably upon ceasing the steroids. The endogenous production of the much weaker and small amount of cortisol cannot dampen any inflammatory response in the area that topical steroids have been applied, nor can they constrict the blood vessels. All cells have glucocorticoid receptors and 20% of genes are influenced by the receptor.
Topical steroids should be banned for skin conditions in my opinion as 20% of children now have "eczema" and it is only increasing since steroids hit the market in the 60's and became much stronger in the 2000's. The strongest that should ever have been made and applied should have been 1:1 binding affinity with cortisol. Medical industry is in shambles in the current year.
This makes the most amount of sense with the research I’ve done too. It’s why giving it time is what usually works for people. I personally am not messing around with any more pharmaceuticals for skin issues unless it’s an emergency. If they “can’t explain” the phenomenon that’s happening to so many people, why on earth would a trust another drug?
Thank you for speaking on this!!
OMG you are the best Dr. Idriss! Can’t believe you are talking about this topic! I’ve never had eczema and I personally went through TSW because of a mistreatment of an allergic reaction I had postpartum. I only used mild TS on and off on my face for 2 months and I had TSW after, only on my face. One of worst things I’ve ever been through that’s for sure. I had postpartum depression during that time and one of the side effects of TSW is depression. So it worsened my ppd during that time. Even now 1 y 4 months TSW I’m still experiencing mini flares but it’s so much better than before.
Because many dermatologist start talking about TSW. Before all quiet. Off course need have propaganda of new miracle drug like Dupixent. It's really not work for TSW. Time is working.
Thank you for addressing this issue. My daughter has TSW. She was on Dupixent but had to stop due to side effects. Traditional dermatologists have not been able to help her so she's trying a more holistic approach.
Mind if I ask what side effects? Considering Dupixent, trying to weight out pros and cons
@@sarahlandry826 She was on Dupixent for about a year. She developed severe joint pain, especially in her hands, so she stopped it.
Hi! May I ask what was her approach? 🙏🏻
@@darkflower9090 She stopped using any kind of steroid or non-steroid drug for eczema to get them out of her system. She went to an allergist for tests to see what she's allergic to so she could avoid those potential triggers. She joined Facebook support groups for people with eczema and TSW. Right now she's seeing an acupuncturist, who she feels is helping. She uses ointments like Vaseline rather than creams or lotions, avoids any products with fragrance or essential oils, and takes an antihistamine like Benadryl for itching. She is careful about what she eats. It is a slow process with a lot of trial and error to see what helps and what doesn't.
@@lindachafetz2670 thank you for your reply, hope she will be completely cured soon 🙏🏻❤️
Thank you for bringing awareness!!!!
Thank you so much for speaking on this! 🙏
I have TSW, I am part of a lot of TSW support groups. The problem is that when you stop taking dupixent, you will also have withdrawals and experience all the symptoms of TSW again. It’s a Band-Aid for the problem, not a solution. As someone who has suffered with TSW for nearly three years now, I can understand the desperation. The medical and pharmaceutical companies are not being held responsible for the damage that these over the counter creams are causing.
This ^^^ I went through TSW and am fortunately healed. I still have some atopic dermatitis (that was present before i went on topical steroids). But I was in all the TSW forums and everyone said what you just said. Depixent helps but then you flare again when you stop taking it. It doesn't cure or heal the underlying issues with TSW, it just suppresses symptoms, just like the steroids were doing before that.
Thank you so much for posting this - it is so great to finally see a medical professional acknowledging the existence of this condition rather than denying it because they can't explain it (due to lack or research - as you mentioned).
Dupilumab is having amazing results for many patient - in the UK two more drugs in the same group have also been licensed which will mean more people can benefit.
I not have results with Dup
Thank you for helping spreading awareness. I am going through TSW and also on Dupixent. It is helping me, although I still have some of the systemic TSW symptoms. It definitely has made life more livable though.
Thank you for making this dr.
I just recently started dupixent! Loving it so far. Didn’t have tsw but severe atopic dermatitis
Topical steroid withdrawal can be caused by OTC topical steroids too. I used it on my face for a long period of time and am suffering the consequences, two years post using them. Also a lot of us in the United States can’t afford dupixent unless we have good insurance. I really wish there was something that could help everyone going through this.
My thing is, how can I trust any dermatologists they are are the people who prescribed this nightmare medication to me. Nobody told me 35 years ago. This could happen to me it’s a living. Hell no person should have to go through this.
Exactly this. Imagine going on dupixent and then suffering from a worse withdrawal in years to come.
I have been through this. Please share this. People need to know about this.
Yep this happened to me… thanks to a pcp who prescribed topical steroids for a “rash” on my face. Getting off the steroid was a horrible experience and took months of antibiotics and years to recover. I now have rosacea. Please please please always go to a dermatologist for skin concerns. Had I done so, I wouldn’t have gone through that horrible experience.
Omg I think we went through the EXACT same thing! Same symptoms! I’ve never had eczema before and got proscribed TS by a derm for an allergic reaction on my face. I put it on and off for 2 months and stopped for good. I recovered the worst phase myself now I’m 1 y 4 months TSW, I have mild to moderate rosacea like flares sometimes on my face. Some people in the TSW community said it’s just a TSW flare but I don’t know…..
Ruby mars I am 11 months out of steroid. Had acne due to mask and dr gave me ST and I ended up in this condition. I am very upset with my self for using that cream that was doing more harm than good. I want this to get over and get my life back. How can I connect with you?
This can also happen with topical immunosuppressants like tacrolimus. A lot of dermatologists are prescribing topical immunosuppressants now instead of topical steroids. This is not the answer. Just like topical steroids, your body will become dependent on the immunosuppressant, it will become less effective, and you most likely will withdrawal from it just like a topical steroid. I don't really know much about Dupixent, but I would be weary of being on any drug for an indefinite amount of time. I'm not a doctor, but I have had TSW from tacrolimus, so I'm skeptical of any drug now. Just do your research before committing to being on a medication for the rest of your life. I think dependency, declining effectiveness, and withdrawal can come from just about any drug.
this right here!!
Could you please make a more in depth video about this? I can’t seem to find a doctor who believes me or is willing to help me with this condition
YOU ARE STUNNING!
Thank you so much for bringing up this topic. Im currently going through this phase of my life after using cortisone for over 4 years for my eczema. My tip is to take constant warm showers. Like 3 showers a day. It sounds like a lot but it definitely helped me. Put on a moisturizer then a ton of Vaseline. Ive seen ton of improvement in about 2 weeks.
Is it still working ? I’ve though about using Vaseline on the effected areas.
It happened to me 2 years ago and ever since everything dr Idriss mentioned (minus disability plus pigmentation). I think the most difficult moment was when it reached eyelids and blinking hurt.
Is Dr. Dan's Lip Balm safe to use long term?
I was on Dupixent for my eyelid eczema and it was so helpful and the I didn’t experience any side effects
Great information, im bagging this, doc wants me to have chiropractor to apply on my knee skin
I've had this condition. JAK inhibitors are coming out on market and worked better for me than Dupilumab. Cibinqo is the drug I used that works better than Dupilumab. I was on a clinical trial for both in a double blind study, and dupixent worked for me for about 6-8 weeks before reverting back to TSW. It is a biologic so your body can get used to it or fight it. Also 30% of patients have allergic conjunctivitis that take dupilumab which I did. Cibinqo was just FDA approved and an oral pill once a day vs biweekly injections from Dupilumab and less side effects with greater efficacy. Research and take with your doctor's recommendation.
And have so terrible side effects.
is cortizone 10 over the counter ok to use 1 week on and 1 week off?
I always come back to you please help my son has steroid cream withdrawals. What is the name of the cream you mentioned could you show a picture of it .
I had TSW. It was so bad that it lasted 3-4 years and the reason why it went away is because I was one of the test trial for the dupixnt or people call it dupilumab. I was taking the risk and danger of injecting myself with a trial medicine so that my TSW could be cured. Let me tell you that it worked.
Thanks so much for this intro. I’m on Mometasome 0.1% for my scalp and my doctor says I can use it indefinitely. Do I risk steroid withdrawal? I’m a little worried
I was JUST going to ask this same question I’m very curious about this
I have used Synalar for four weeks. two weeks 2x a day, 2 weeks once a day. My dermatologist told me there was no risk of me overusing it but i do see an area thats red on scalp now.
But I have to say thank you for recognizing it. It’s quite refreshing for a dermatologist TV even admit that this exists.
Yes. I have had this experience. It was awful. 5 months of antibiotics to get rid of it. My best skincare friends during this time were Avene and La Roche Posay products. It was worth getting to the other side. 😊
please what exact products did you use? and how long were you on steroids for?
also, sorry to bother you. what antibiotic did you use? did you stop using steroids immediately or did you gradually stop using it?(if yes, please a guide). thanks. I just noticed symptoms and I’m really going through it right now.
@@karinaakosubo7432 me too. We need to talk to someone who is going through this it only helps and ease hearts.
does using pemicrolimus or tacrolimus cause this too?
Can someone spell out the name of the medication please, I didnt understand :(
I've been using desonide cream and I love it. I have not seen anything weird from it yet. It's been over a year.
Thank you for acknowledging TSW
My partner has been going through TSW the past 6 months and it breaks my heart seeing him suffer, I wish I could take it away from him and go through it myself instead 😢
Does moving to a warmer climate help?
I've been there...its so painful that we can loose our mind...but we have to get through that because stay with steroids does not the answer to heal..after 4 years i still hv flare up hefe and there but not so much pain anymore...time only the thruth healer...depwnda on the body and our mind..thats all..the sufferer has to love themself to get through this...and its all worth it
I am one struggling with red skin symdrome. I used dupixent but it caused lot of eye redness and I have to quit it.
Does betnovate cause this too
dupixent was life changing for me!! ❤
For me nothing help
I’m on Dupixent and I was very bad. I will never stop taking it. No scratch. Little really no flares . Slowly everything resurfaces. The skin is the first thing to change is the skin
I worry about this for my young child with eczema. The derm dismissed TSW as a concern, but we use it on his eczema patches every few days. Is this something I should be more concerned about? Eczema causes him to suffer, too, so it’s a hard spot to be in.
All I know is that I used OTC hydrocortisone on my son one week on and one week off as prescribed by his doctor and he ended up with TSW and I think he was showing signs a few months into doing that but we didn't realize until almost a year into using steroids and by that point we were using stronger stuff because the hydrocortisone stopped working.
Not everyone will develop TSW but I can tell you the warning signs I wish I had listened to. Every time we used the steroid cream the rash would come back and it started coming back worse then before and spreading to new areas after treatment, while this was happening the steroids were becoming less and less effective at clearing him, stepping up steroid doses or using them more often or for longer seem to work for the first couple treatment cycles but the same thing would happen and the steroids would be less and less effective the more we used it, eventually they stopped working and didn't clear him hardly at all. Then we stopped using them and he a bright red, full body rash and had TSW symptoms like unable to regulate body temperature and nerve pain. Also his growth had slowed down and then stopped while we were still using the steroids and he was dropping many percentiles which was another warning signs of TSW.
Please consider finding the root problem that causes the ezcema. Using the topical steroid is just a temporary plaster and you'll just keep using it. X
TSW is worse. Your child may need help with leaky gut and/ or food allergies.
My dad is in his 60s and suffer from this because he used steroid cream for eczema alot and often
14 months after the start of my tsw. Use it on my neck off and on for 6 months. Cleared up about 80.% after more than a year . I recently got an ear infection. The drops had riods in them , after 14 months of hell I'm back to square 1 FML
That's absolutely horrific. Sorry man.
Dupixent is a live saver for my Son!! I'm so happy it was invented
I love how she talks
I thankfully recovered from TSW (used topical steroids for 15+ years from my PCP and was stopped as soon as a derm saw my skin about 10 years ago now) but have permanently red skin and noticeable skin atrophy. In case this helps anyone, skin patch testing can help with avoiding your triggers of eczema flares and help your skin barrier to recover (why did no one suggest this to me until my thirties?!). This kept my skin clear until the crazy flare that ended with me taking dupixent two years ago. There are support groups on facebook for both TSW and for dupixent, and they are both generous with information. I wish I'd found those groups before taking dupixent so I'd made a more informed decision about possible side effects (my doctor brushed those off and it's certainly true than many people don't have any, but I tend to get rare side effects from any medication I take, which I was very up front about). I wanted to make an informed decision about what I was getting into, and even called the folks at dupixent and asked for results of their clinical trials, but the drug was just too new then. Unfortunately dupixent was not for me -- it cleared my eczema but also resulted in hair loss, a strange fungal rash on my face, an eye gland disease, and uncovering of underlying joint hypermobility -- and I found the facebook group after I took the medication. This is not to say dupixent doesn't work wonders for some, and technically it did for me too, but if you're already feeling horrible and used to dealing with one issue, swapping it for something else can also be really difficult emotionally.
Doesn't just have to be topical..if you misuse steriod cream and then take oral steriod, this can worsen your condition. This goes for eye, ear, and inhalers with CORTICOSTERIODS. I was 1 year in to tsw recovering 90% i got and ear infection. The drops had antibiotics and dexamethasone in them..48 hours later, my face was extremely swollen (my neck disappeared) and peeling. I had zero chin. It had given me red sleeves which I never had with my first go round with tsw. Dr. Rapport has said that if you use topical wrong or for too long first... the corticosteroids will set you back. For me its been far worse than the first go round.
My son didn't use steroids for long at all and ended up with this even with hydrocortisone
I remember my dermatologist told me to just stop scratching, and would prescribe me more cream with instructions to use sparingly. I got rid of him. My new Dr got me dupixent, it worked great, but then insurance wouldn't cover it because it is over $10,000 a year.
It is NOT "more common in women". It's just that one study mainly focussed on women.
Does it affect all the body or only the areas where the patient applied topical steroid for a long period of time?
I have so many questions I wish that you dedicated a specific video about this phenomenon.
How long does it last? What are the treatments? What can people do to prevent it ? What are the symptoms? etc
No it doesn't only affect the areas where you used steroids it can spread to your entire body. Withdrawal symptoms can last for a year or more. My son when through TSW at 18 months old and now three years later he is completely clear except for a few small ezcema patches. From what I can see being in a support group for TSW the most popular treatments are no moisture treatment, traditional Chinese medicine, homeopathy, sometimes immune suppressants, or the drug she talked about here. Then some people heal with nothing but moisturizers and time or other various treatments like dead sea salt baths, special diets, or light therapy.
czcams.com/video/x4ypA9w81f0/video.html
Watch the link I shared for u
dupixent ? really ?! have you seen those withdrawal symptoms ! horrific.
How does a person know if someone has this topical withdrawal?
I would like to know as well. I used a middle strength steroids on my cheeks and since the day after I have a very tight and uncomfortable feeling at my upper cheek. I can’t even laugh or smile now without feeling discomfort there. I wonder if I have TSW.
Dear...could u plz name the medicine....i couldnt get the name
Dupixent
Doctor it's good you are honest and saying many don't know why this is occuring. However, Honestly I've been reading up on much research studies it says the herbal creams work best for skin issues.
Wow, sounds like this can trigger ME/CFS, which is a nightmare of an illness (and eliminates your life). Thank you very much for bringing this up, good reason to avoid topical steroids as much as possible and be mindful for those of us with eczema!
It’s hell it should be categorize as a disability I struggle to get to work because of it I might have to quit my job idk how I’m going to get income
Dupixent and Rinvoq don't work.
Please help me I've highly affected by steroid pls help me its quite pain full and hurting 😭🙏😭🙏😭
It's supposed tp be for short term use. That's why they keep prescribing ot month after month, year after year. 'It could thin your skin' is all we're told. 💀👿💀
How sad that doctors who are supposed to have to have their patients best interests in mind can be sponsored into putting patients on one drug or another. Thanks for sharing this new drug. I wish all medical advice was to help people not make mega money.
Please talk about led masks for face
It's everywhere these days
Don't mention that it mainly affects women because then it will take another 20 years before it even starts to be researched.
not just long term, I used steroids (momentasone) for one week -in my face- and I suffered a hard topical steroid withdrawal, it was incredibly horrible. 💔😭 I had all the symptoms. my skin looked awful and I was devastated, so much pain, itching and flaky skin. I’ve never before was suffer something like that.
I’m in the same situation. I’ve used it on my cheeks for one week due to redness and itching. I’ve used it 7 days in the last 10 days. My skin hasn’t healed but I want to stop anyway because I’m terrified of this.
Have you recovered ?
This condition is known in science but happens to limited number of population but no one knows why
dude my legs are destriyed
Forget Drugs, drugs is what causes it, why would they trust another new drug, doesn’t make sense to me
I have eczema on my face
Hi doctor! I saw in a previous video you recommended a retinol eye cream. I’ve read retinol can permanently affect eye lubricating glands that help to keep our eyeballs moisturized. What are your thoughts?
PROOF THAT X-ZYME HELPS ECZEMA.
From bangladesh,,,love you sweety
Frying pan to fire!
You need to read the peer reviewed research paper on this. Research from like Dr. Rapaport and Sheary who's had experience treating this condition.
Why not just continue the steroid?
Because it stops working after some time, people build resistance to it
It stops working
I was a long-term user (35 years) and the answer to that is that they stop working and we become addicted to them. My body didn't give me a choice at the end
Thanks, drug dealer
Hi Dr. Idriss, here is a link to Dr. Rapaport - czcams.com/video/DaWf5GoxYgU/video.html
Do Dermatologists routinely address nutrition? See Dr Ken Berry’s channel, Dr Shawn Baker, Dr. Anthony Chaffee, Dr. Bright, Dr. Robert Kiltz. Prevention and reversing skin conditions with food rather than steroids sure sounds safer
Sure it is great to eat well, but lots of eczema can't be treated only by adjusting nutrition.
@@emmalarsson8291 proper Human Diet has for many
@@irishlovely8867 If that helps people, I am happy for them.
They do not because there is not enough research supporting it yet, besides just “eating well.” There is no hard and fast rules for eczema because it is a combo of genetics and environment
I've had success by eliminating gluten and sugar.
Oh my gosh, I use Betamethasone for Grover dz - not every day but, maybe one or twice a week now. Have you done any videos for Grover dz? How common is it?