Is Topical Steroid Withdrawal Real? Dermatologist Answers TSW
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- čas přidán 3. 06. 2024
- Today we are going deep dive into the intriguing world of dermatology where we explore a much-debated topic: Is Topical Steroid Withdrawal (TSW) real? Join us as Dr. Dustin, a board certified dermatologist sheds light on TSW, offering expert insights and answers to your burning questions.
🔍 What's Inside:
00:00 Introduction
02:34 What are topical steroids?
05:38 What is TSW?
06:14 What causes TSW?
10:12 Diet & Nutrition
12:03 Medications for TSW
13:36 Daily routine
14:22 No Moisture Treatment NMT
16:18 Supplements
16:55 Microbiome for TSW
19:24 Red Light & Phototherapy
21:00 Mental Health & TSW
Products Discussed:
Dr. Rogers Restore Healing Balm - urlgeni.us/amzn/roghb
LED Light Therapy - urlgeni.us/amazon/LEDthx
(I have not personally used this brand, but it is well reviewed on Amazon)
Understanding TSW: We begin by defining Topical Steroid Withdrawal, unraveling its symptoms, and examining why it occurs. This segment is crucial for anyone looking to grasp the basics of TSW.
Potential Causes and Treatments: Delve into the scientific explanations behind TSW. Discover the potential causes and explore the latest treatment options available.
Controversy and Discussion: TSW has been a subject of much debate. Hear the perspectives of medical professionals and patients alike, as we dissect the controversies surrounding this condition.
📚 Educational and Informative: This video is packed with evidence-based information, aiming to educate viewers on Topical Steroid Withdrawal. Whether you're a patient, a healthcare professional, or simply someone interested in dermatology, there's something here for you.
🔔 Stay Informed: Don't forget to like, comment, and subscribe for more insightful discussions on dermatology topics. Share your experiences or thoughts about TSW in the comments below!
👉 Follow Us: Stay connected for more updates and expert insights into various dermatological conditions.
📒 Show Notes and Resources 📒
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My daughter is suffering a living hell! She used topical steroids as prescribed by her doctor and dermatologist. Please do not suggest for 1 second that it has anything to do with patient misuse! I just want the medical professionals to shout out that this is real . You need to study more cases. Nothing other than time cures this condition. My daughter has had septicaemia twice and nearly died. You need to heal from the inside out. The nervous system has been damaged by these steroid creams . Live with the patients and then comment! People have committed suicide. There's no financial help when they lose their jobs. They need 24/7 care . Years and years of pain!
Theres actually a number of researches done on TSW. Dr. Marvin Rapaport have written a number of peer reviewed articles on this. And he's been a dermatologist since the 1960s. As a dermatologist you should read them and be up to date with this.
I know Dr. Rappaport and have interviewed him on my podcast, I’m familiar with his work, but he is just one dermatologist, we need more studies done by more places
Thank God that based on his extensive practise and sincere consistent introspection Dr Rapaport is able to stick to this rather scientific and simply explainable phenomenon of topical steroid situation happening to real people which did not happen until mid century in the past whenever . ' other' dermatologist are definitely not being considerate as sir you are and dr rapaport is
thanks
So glad more doctors are acknowledging this illness
left this comment on your old video -
August 31 this year was my 3 year anniversary. I feel wrong for saying this because it is discouraging but in my opinion there are only two things that "heals" tsw. It is years (time) and sleep. I think one who suffers from tsw must accept this fact and be at peace with the fact that this is going to take years if you fit in the moderate/severe case. My torso and arms were affected. Sleep was an issue for me. I did not dream for many months because my sleep would be highly interrupted every single day and I had kept my 9-5 job...we all know your body repairs itself when you sleep....well I couldn't sleep for about 8 months. I feel like I biologically aged faster because of that timeline. When every square inch of your arms and torso+neck is affected, it is impossible to lie down flat on a bed in a comfortable position. Can't sleep sitting. The result is just pure sadness cause you want to sleep so bad and you know that you're damaging your body not being able to sleep while having all these tsw symptoms. No one will ever understand. I know there are worse traumas and sicknesses out there but scratching from 8pm to 4am then sleeping 3 hours waking up every 45 mins and then having to commute 90 mins to work while your skin feels like death underneath your clothes is so far the most ive endured in my life. Did that for a few months. Not sure how.
To actually give you an answer though, even though there really wasn't much that helped me personally aside from self psychotherapy, I think at the beginning , you must have a care taker if your symptoms are severe/moderate. I cant imagine anyone doing this alone at the most worst months. For example, if you're arms and hands are completely affected and destroyed, how do you wash your scalp/hair? How do you do laundry? How do you wash the dishes? Gloves? Not comfortable.
One day, I plan to make a very detailed video of my case. Full history. Full prescription history, type/class, pattern of use, length of use, brand of tcs. All of it. Area of use. Amount used. Timeline graphed. Pictures. I will make this video one day. I will have it co-signed by multiple dermatologists. If you look around, this video does not exist. Research does not exist. Full complete case studies that do not touch immunosuppressants do not exist. There isnt a single clean case study beginning to end out there. It's all recollections and clinical experience (Rapaport). Quite frankly, Rapaport is the only physician who gives a damn about tsw outside working hours. And a few docs like your Dr Portela. Tsw will exist 50 years from now. It's a disease phenomenon (mostly because of how similar the symptoms are to other skin diseases) and tragedy.
It must be hard for physicians like yourself to diagnose and treat tsw when the only thing that heals it is years in most cases. How do you tell someone that? Also, it's reasonable to think that it is possible go through TSW and immune skin diseases like psoriasis. Small percentage of the population suffer from psoriasis and other skin/immune related issues. The pathology of psoriasis is well studied but the symptoms of psoriasis and tsw are identical/similar. Such cases are a bit difficult...because the cause of psoriasis is supposedly "unknown". Humans have created atomic bombs and built satellites that orbit the earth in space and can almost travel to mars yet no one knows anything about skin diseases and 99% of the planet's doctors dont believe in TSW. It honestly is remarkable how little we know about skin diseases and nutrition. No one knows what foods are the best foods to thrive. I think we are starting to get there though on the dieting front.
I saw a reputable dermatologist for years, each time i saw her, she gave me corticosteroids. From class 3-4 to class 2 then to prednisone.
I've done the same. Documented every single day of going thru tsw with photos and written logs and kept a record of all my prescriptions used and medical records and history of all doctors visit and what they said and wrote in the report. Totally agree with you on everything there. And those going thru tsw really need someone everyday to help. Don't know how u went to work. Hope u getting thru this.
Thank you for sharing your experience. Please let me know when you make that video.
@@Johnnymahon218 im doing much better now. But you know how this is, some problem areas take a bit longer, has me wondering if it is even still tsw but I will get to the bottom of all of this. My worst months were doing the middle of covid. So I when I commuted to work, the streets and trains were empty so that helped...it would not be possible doing it now. My office was empty. I was mostly left alone. Occasionally I worked from home.
Idk how far along you are, but hope you're recovering positively.
@@nhtathinfbntb2746 it took like a year for me to get over the worse. Its been 2 years now and still have dry patches in certain areas that seem to very very slowly get better. Both upper arms have like rings form and grow out and disappears while new small rings form and grow out and disappears. Max is like 5cm. It's not ring worm. Same stuff as when going thru the bad tsw. Doctors in Skin on Fire doc mentioned about this. Like pimple areas that grow out. Legs dry but getting better. It's like the skin remembers where the patches were. Dr. Rapaport who I used said the skin remembers. Very interesting.
Man this is a long video to say "I haven't got a clue what helps sorry"
Dr.Dustin you are such nice doctor. I am very glad to see you with your very humble and considerate opinion on TSW.
I am in my 20th month of TSW also a patient of Dr.Rapaport.( consulted him once) for my current condition. He was very humble and helpful for me mentally. Anyway,
In the year 2021 June
I was given TS for just a simple acne on face due to mask wearing by a local dermatologist in Kirkland, Washington. That led me to TSA and now TSW. I tried every Ayurvedic, acupuncture and Chinese medicine but all of that made my condition worse. I decided to go cold turkey and started healing process. As you mentioned I have the pustular rash and not redskin. I used La Roche Posay thermal water based cleanser and moisturizer that helped in the process. I agree with everything you mentioned in your video. You are the first dermatologist I can agree with after Dr. Mervin.
I am not completely out of this condition though I used it sparingly for 8-10 months ( mometason forate .1%)
Sorry for long story. Thank you for your video.
Thank you so much for this video! I am unsure if what I am experiencing is TSW. I am from Bulgaria and none of the dermatologists here have ever mentioned it. I decided to completely stop steroids about 3 weeks ago and I am experiencing some of the TSW symptoms. A dermatologists suggested RINVOQ, I am however terrified of starting it as I feel it would be exchanging one toxic thing (steroids) for another.. What do you think about RINVOQ? I am sorry if this has already been discussed, I have just stumbled upon your channel and will be going through all the content in the next few days.
I went cold turkey on the creams however I was diluting them with water on my skin for about a year before attempting this (not planned, just concerned with potency) which I feel may have helped the withdrawal somewhat. Stuck with a lot of Vaseline as my only form of treatment which I am reducing now as I want my skin to produce the necessary oils. Been through all the symptoms (red/oozy/flaky) skin in all areas of my body despite eczema being localized previously, sleepless nights due to the cortisol imbalance from months 4-6 (which was the low as well as severe fatigue for about 3 months and lots of general sickness with no skin barrier. It was really awful not being able to move my body. I am currently around month 15, it gets easier as the inflammation eventually clears. I get flare-ups on my back periodically and original eczema on my hands and ankles but all manageable now- it doesn't affect my mental health like it did during the first year. I stopped eating Gluten and dairy. I think the decade and a half of steroid creams masked this intolerance somehow as I only noticed a rush of histamine and itches/swelling in the leg after consuming these when I had given up the creams as my skin became ultra-sensitive. Still sweeping up all the 'snow' though guys- looking forward to that ending one day. One silver lining was that I could eat as much as I liked as my body was burning so many calories in recovery (think this is slowly ending sadly). Thanks, Dr for your video It's reassuring as I too have had pushback from my GP for years who eventually just said it's tough but you're gonna have this for the rest of your life and the creams are your only choice you've got. Why it's taking so long for this to be recognized formally is beyond me but the tide seems to be turning. I see lots of dermatologists saying there needs to be more research. Come on then....Let's do it, this is your field of expertise and we have many experiences to share!
What about micro needling with prp to help accelerate healing of the skin?
It's controversial because doctors will have to admit they have been greatly harming millions of people. The blowback from admitting this on a wide scale by the medical and pharmaceutical industry is massive. How are dermatologists going to treat skin conditions if they can't just throw a pharmaceutical at you? How much money in lawsuits could this cost? deny deny deny.
Yes diet is a huge part of eczema ! But doctors don’t focus on this ! Doctors look at patients like there crazy and give a tub of cream !
Oh I’m so cross right now, my son has been suicidal due to TSW it’s taken away his quality of life .
Dermatologist we have met just didn’t care !
Hope your son is doing better.
My skin once was super bad and itchy, and also concidered suicide.
I eliminted dairy products, soy, beer and sea food.
By myself I reduced the steroid creams and switched to prednisone and im still reducing the dose little by little.
Prednisone is an steroid too.
Not a medical advice but your son has to look to what works for him.
These dermatologists belong in jail. Their negligence have resulted in lots of suffering.
Hope your son gets well
@@dariotherunner thank you .x
Thank you for admitting this! Doctors have been negligent with my son for 10 years and prescribed steroid creams.
Now he has TSW I don’t respect dermatologist! Sorry
Steroid creams should not be allowed to be prescribed to patients! No no no !!!!!!!
Doctors need to be mindful of what there giving to patients !
You seem like you care can you help us?
Dermatologists just dont care.
They belong in JAIL i don’t respect them a bit either.
@@dariotherunner thank you
CAP technology tailored to tsw has shown promising results of which many cap patients have documented their progress on their socials
Haven't heard of that before, will have to do some reading.
No moisture treatment and red light therapy treats the core problem of TSW which is skin atrophy takes a long time but it’s one of the only ways to truly fix the damage done by steroids
No moisture treatment is extremely tough. You have to restrict all fluids coming into your body and that is extremely difficult to do. Eg you would not have a casserole as that contains fluid, or ice-cream, etc. Even foods like cooked rice, pasta, fruit and vegetables are made up of a percentage of water.
I wouldn’t use topical steroids for any skin conditions after going through a living hell. I followed the doctor’s instructions & that did not matter. It takes as little as 2 wks for your body to become dependent & months-years to recover. Your blood vessels & nerves get damaged while using these steroids. I had no idea (nor my doctors) what was going on with me or my skin for years! I was sent to dermatologist, allergists & tested several times for different conditions…blood test, skin biopsy etc, allergy tests…All to find out later I was going through withdrawals from all the steroids they prescribed the whole time, nothing else was wrong with me. Tragic!
Is TSW cause by Cortisol or Adrenal glands problem from using too much Topical Steroid? Is this a systematic problem?
it's hard to take you seriously when on twitter you say things to your fellow dermatologists like "oh, don't get me started about TSW, those people are nuts." We both know you said it. so this all seems disingenuous.
That was a long time ago and I took time to educate myself about the condition. I was wrong then and am correcting that and trying to provide helpful information.
Wow really? Shit like this is why I'm starting to lose faith in doctors.
@@drdustinportelaRespect dude
If you have never used steroids but was prescribed pimicromilis 1% for the face to be used daily longterm can you have a similar experience to TSW? Some people say calcineurin inhibitor's can still put you at risk for something similar to TSW. Thank you!
I was prescribed tacrolimus .1% which is a calcineurin inhibitor. I used the ointment for something like 4 years. I had to keep using it more often, until it seemed like my condition wasn't any better than when I started using it, so I stopped cold turkey. I didn't realize what was happening to me until I learned about TSW and how Tacrolimus was just lumped in with it. After about 2-3 weeks, my condition got really really bad, but localized to the area where I applied the tacrolimus, which was my genitals. it was about 9 months after I stopped using tacrolimus that I finally found TSW online. None of my doctors, dermatologists, or a urologist told me about TSW, I just thought the tacrolimus was suppressing an infection of some sort like Molluscum contagiosum that I had when I was a kid, and it was just really bad now because the tacrolimus was suppressing the symptoms. The multiple dermatologists I saw during this time just prescribed me steroids, which I would use sparingly, but was probably setting my recovery back. I stopped using tacrolimus 26 months ago, and I stopped using steroids 17 months ago. Luckily the withdrawal stayed localized to my genitals, but it was pretty bad, ie red, oozing, flaking, swollen, basically looking like a zombie's junk. Right now i have red spots that come and go and flakey skin. I'm unsure if what I am experiencing now is the withdrawal of the tacrolimus or the original psoriasis I was diagnosed with. I can tell you from my experience and the severity of my condition after stopping tacrolimus, 100% I was having TSW like symptoms from stopping the use of Tacrolimus. I have pictures of my recovery, I'm not going to link it, but if you google, "Let's talk about Protopic" click the 1st link and go to Cara Ward's blogspot from the link on that page.
I'd love an answer to this too, as I chose a calcineurin inhibitor cream (Elidel in Australia) instead of steroid one, as I thought it'd be safer. Well, 6 months later, after using Elidel twice daily for most days, with occasional 2-3 day breaks from it - my redness and itchiness returns when I stop. The worst part is that it is on my face, and particularly ferocious around and on my eyelids. the skin around my eyes are incredibly red and very, very wrinkly - like an elephant. It's hideous, and I can't even wear makeup to cover it. I can't have a life like this! I avoid all social situations or only go out during the day where I can wear dark glasses to cover the worst of it. It's also around my neck, on the underside of my arms, back of knees, ears, arm-pits, and around my lower ribs and abdomen. NO-ONE can help. I feel so depressed and like there is no hope. Sometimes I wish I were dead. I would say, if you can avoid ever using any of these products, do so. There must be an answer to this! Is the ignorance due to lack of communication between dermatologists and other specialists???? The immune system and digestive system are almost certainly involved, but you get looked at like you're from Mars if you suggest this. I'm so over it.
I thought I responded to this, which is why i was notified that someone else replied... Maybe my comment was deleted?? I was prescribed tacrolimus .1%. I used it for about 4-5 years daily. It became less effective over time, so I stopped using it after applying it 1-2 times a day. When I stopped using it, my skin became swollen, oozing, red, skin flaking off, exactly the same as TSW, but it was localized to the area where I applied the tacrolimus. It was really bad for about 6 months, then it went to what could be the original psoriasis issue i had before. It's been 27 months since I stopped using tacrolimus, and my skin is still red and flakey, but that could very well be original psoriasis. I hope my experience helps you guys.
So update - I saw a dermatologist who told me I could cold turkey stop the pim cream. I did and my skin just went back to the way it was before. No worse no better. Hope that alleviates someone’s fears! I was very scared. I used it 2x daily for almost a year. So maybe a reaction happens to some but not all.
@@Mcbuggler Thanks, glad to hear it's not worse than it was originally. Let's hope we all find a way to finally heal this! Best wishes!
It is very real
Steriod already damage the skin barrier 😢😢😢 why dermatologist suggest that for all patient 😢 please stop that all patiest will be suffer from TSW😢
To promote products?
Lo siento pero los dermatologos an perdido mucha credibilidad para mi 🤬🤬🤬🤬
I understand when many can be dismissive of the condition.