Second Conversation with Dr Marvin Rapaport. Topical Steroid Withdrawal, Red Skin, and.....Herpes?

[@VickyG442]

If your big voice is falling on deaf ears you can imagine what they say to us. We are not peers and they gaslight us.

[@Alex-Road2Fire]

Thank you Dr. Rapaport for getting my life back, better than ever! Your peer-reviewed articles, interviews, and news articles gave me the clue that something was wrong! You gave the right diagnosis and the right treatment! Eternaly Grateful!

[@MI-wl9vv]

Thank you, Dr. Rapaport! It's such a relief for me when I watch your videos. They allow me to understand what I am going through with the assurance that I will be CURED! TSW has been quite a challenge physically and mentally. I appreciate you're cutting through all the BS and SCARE I read online. Thank you! Thank you!

[@hannakurimoto-fischer7600]

Dr Rapaport, I’m a TSW sufferer from New Zealand and I am so thankful for your guidance and wisdom on this. My eczema developed at age 8 after falling ill overseas, I had no skin problems before then. During high school my skin was very good, due to my laziness of not using steroids during a flare as a 10-12 year old. However in 2018 after a mistake made with pharmaceutical labeling, I used a ton of steroids in my face believing it was moisturizer. Since then my skin has suffered incredibly, showing up in areas I never had before in my life. Two months ago I started my TSW journey, and am extremely excited for my skin to heal. Thank you, I will forever be thankful and will continue to follow and support you

[@camilleleblanc8422]

I wish you strength courage and patience for your TSW journey, i hope it goes as fast and smoothly as possible!

[@shaneicechase7829]

It’s so nice to see a doctor who actually cares about healing people and not the money! I’ve talked with my doctors multiple times and he doesn’t believe in TSW I’ve changed doctors a few times now but non seem to believe. Thank you for these videos I can’t wait for more and to learn how to heal better and all the answers to the many questions we all have going through this terrible process.

[@delphinelambese2492]

Thanks you so much from France 🙏🏾

[@yduenas08]

Thank you Dr Rappaport!! Not many Drs like you.

[@marvinrapaport228]

very kind comment - I need to cure everyone

[@srutenbarg2529]

Thank you for the videos. Because of Dr. Rapaport I understand that I have not Eczema, but TSW. I'm now about 14 months steroid free. But the biggest problem I stil have is when I do fitness or high intensity activities and I start to sweat, my neck, inner elbow, my lower back and behind my knees are start itching like hell. The skin turns pink in that places and I can see clearly small vanes in my inner elbows. I start to sweat alot at the places at that moment.

[@drago5509]

Truly thank you Sir.

[@lilincoopr]

Great interview, these are some heavy topics to tackle for us TSW sufferers. Excited to follow this series, definitely looking forward to future episodes! Keep’em coming!! #7yrsTSW 🙋🏻‍♀️

[@nomadvintageclothingonetsy4416]

Thank you-this is the morale boost I needed after having a complete mental and emotional breakdown today. 5 years TSW and feel like I’ve got to be nearing the end of this.

[@hey.its.kenners]

If you don’t mind me asking, are your flare ups still intense? I’m 3yrs 3mo in & still trying to stay positive. I’ve been using steroids since I was 5 (I’m 32 now), so I expect to be more of a “long-hauler”... but my goodness, i also would’ve expected to not still have intense flare ups after all this time. I know i would never go near a steroid for as long as I live, but my morale is definitely lower than I’d like.

[@learninglifeways]

@@hey.its.kenners this is indeed challenging but with each passing day u r on the road to recovery. Please dont lose hope. The journey can be long or short however it is the only way out of this condition. As Dr Rapaport says that take a proper medical approach with help of a well trained doctor or contact His clinic for telemedicine . my best wishes

[@benhuremmanuel]

@@hey.its.kenners how long did you use topical steroid?

[@Paul-qq7mh]

@@hey.its.kenners Im nearly 4 years in and still having flares.

[@hey.its.kenners]

@@benhuremmanuel > 25yrs give or take 😓 Sorry for responding so late, I JUST got a notification for the newest comment and saw everyone else who responded months ago 😭

[@Urban57621]

Great video! Always thankful to hear facts even if sometimes it is the same ones again. The questions I raise are the hot and cold again, this is what leads most sufferers to believe the adrenal glands are being suppressed or functioning strangely. Also with food intolerances (flare triggers), why are they so heightened and new reactions appear. Its not just a few sufferers in the groups but lots cannot tolerate simple things anymore, once they could have a bar of (example) chocolate and now having one will trigger a flare almost instantly or within an hour. This also brings the question also of IGE levels, they seem so high in many sufferers. Also my dermatologists in the UK are acknowledging TSW but are saying it is very rare and that they cannot diagnose AT ALL in the NHS health service as doctors have to follow the science... So they can only diagnose once the science has been given to them 😢 Polite note that I watch these videos at 1.75 speed as I find I take it information more.

[@Urban57621]

*With adrenal glands sufferers think your carcadium rhythm has some play in it as you flare at night and then in the day too.

[@shaneicechase7829]

I have a few questions for your next video! Why the smell coming off my body also known as the “wet dog smell” or “heavy metal smell” it’s such a strong gross smell that I can’t get rid of Also have you noticed in many female Patients that there RSS or TSW flare up like crazy near their menstruation cycle

[@yduenas08]

Great interviewer!too! Question did the interviewer go through TSW?

[@bigwavebobby]

The interviewer did go through withdrawal. His name is John and he is featured in the Skin on Fire Documentary.

[@motofunk1]

Dr. Rap saved my life, listen to this man. TSW is a nightmare to go through, but Dr. Rap knows the way out. I do not wish TSW on anyone. I had a weird rash and went to see a dermatologist. Ultimately I found the source of the original rash was a black leather couch from Ikea, but not before going through TSW for 3 years. Below is what I was given over 10 months before I saw Dr. Rap. These drugs put me into a full steroid situation. On them ok, off them, full TSW. The pattern started after the first treatment. I knew I was not getting correct info and in my research stumbled into Dr. Rap's original paper on TSW. I was in bad shape when I went to see him. In the first meeting he told me I would be cured but I was going to go through a rough patch to get to healed. I asked what we would do and he said "nothing". He was exaggerating a bit, but it was a relief because it was clear he knew the way out of this nightmare. With Dr. Raps help I went through 5 months of hell on earth and another 2 years of slow improvement, and for the last 8 years have not had a single issue. Every step of the way Dr. Rap was correct. No other Docs understand this process, get on a plane, take a train, boat, whatever you need to do to see him if you have this condition. I was not an eczema kid, I have never been allergic to anything, this all started with a rash and the following. Urgent Care 5/2/11 - Triamcinolone .5% Cream 60 GM Primary Care Dr - Rash on Buttocks 8/19/11 - Bactroban 2% Cream 60 GM Dermatologist 1 8/23/11 - Ketoconazole 2% Cream 60 GM 8/23/11 - Triamcinolone .1% Cream 80 GM 8/23/11 - Fluconazole 200 mg tablet 1 day/ 14 days Dermatologist 1 11/2/11 - Ketoconazole 2% Cream 60 GM 11/15/11- Clobetasol .05% ointment 60 GM Dermatologist 2 2/3/12 - Mupirocin 2% ointment 22 GM 2/3/12 - Cephalexin 500 mg capsule 2 per day/ 7 days 2/3/12 - Triamcinolone .1% Cream 80 GM Allergist 2/15/12 - Prednisone 10 mg 3 per day/ 13 days 2/15/12 - Cephalexin 500 mg capsule 2 per day/ 7 days Emergency Room 2/18/12 - Hydroxyzine HCL 25 mg tablet 4 a day/ 7 days 2/18/12 - Hydrocodon 5-500 tablet 20 2/18/12 - Permethrin 5% Cream 60 GM, one application Dermatologist 3 2/24/12 - Prednisone 60 mg once per day/ 5 days, 40 mg/ 5, 20 mg/ 5 Last Day 3/15/12 Then Dr. Rap on 3/27/12..... Thanks Doc....

[@Germinal2313]

Wow! That's scary. Had I not found the plethora of TSW cases online when looking for possible causes for my skin rash, your story could have been my story. I suddenly broke out in a itchy rash in May this year which now covers most of my body. I've never suffered from eczema or any allergies before. I was initially given betamethasone which I reluctantly took for 10 days but as soon as I stopped the rash came back with a vengeance. Been trying to manage with moisturisers. A recent blood test showed very strong allergy antibodies and I'm waiting for an appointment with an Allergist. Would love to know how you pinpointed the IKEA sofa as the source of your original rash? Wracking my brain trying to find out what mine could be.....

[@motofunk1]

@@Germinal2313 First I had to get through TSW. Once I did I was still getting a rash but it would go away every time I left home for a while. Eventually narrowed down the timing of when the couch was bought to the start of my issues, then tested touching the couch or not upon return home from time away. Key point, first get off the treatments and let skin resolve itself. Narrow down contact to only a small amount of items when home. It sucks but you will figure it out. What Dr. Rap proved to me is that the skin heals itself if you leave it alone.

[@Germinal2313]

@@motofunk1 thank you so much for your reply - so helpful. Didn't know there's a well known thing called sofa dermatitis until reading your message! My IKEA sofa is about 15 years old and my bed, which I was beginning to suspect, about 2 years. I stopped all steroids after that initial 10 day prescription and have just been using moisturizers since. Will test the contact theory the next time I'm away from home for a couple of days.So pleased you managed to eventually cure your skin issues but frightening you developed TSW due to such short steroid use.

[@mikahspatzierer4464]

What did Dr Rap prescribe ? What did you do to help?

[@motofunk1]

@@mikahspatzierer4464 I should leave that answer for dr rap. There is no miracle drug that cures tsw, it’s a process. If you are having issues, definitely go see him.

[@MI-wl9vv]

A question: Is using lotions/creams on TSW rash/red skin a bad thing? There are so many online that say No Moisture Therapy (NMT) is the fastest way to recover. I find lack of moisture very itchy and just not completely do-able. Does it make a difference as to duration of TSW recovery?

[@asuranrocks]

Dr Rapaport does not support NMT..... but i swear by it ;D

[@Rebecca236]

I'd be curious to know what is the oldest person you treated Dr Rapaport?

[@asuranrocks]

I found that during TSW, i could only sleep when the sun came up. That was the time when the skin was so calm

[@camilleleblanc8422]

Same here! I'm 4 years in TSW and I still can't sleep at night!! If only I could sleep the same way at night then in the day!

[@asuranrocks]

@@camilleleblanc8422 maybe we should work at night and sleep in the day instead 😩

[@camilleleblanc8422]

@@asuranrocks oh my friend I used to do exactly that the 1st year, it was great, i would work from 12 to 7am and go to bed at 8am to 3pm when my husband was at work : a dream ! but now 4 years later I have 3 boys ages 4, 2 and 6months old, they're full of energy during the day😅

[@Titansteam2010]

Where can I write to you? How can I get your help for my little one?

[@emilyviolet4615]

I used topical steroids on my nipples and now withdrawaling, is my skin permanently damaged in such a thin area :( won’t stop weeping

[@nomadvintageclothingonetsy4416]

Mine too

[@stayfreshrhys3892]

Thank you Dr rapaport. I’m currently 19 months in to tsw, the full body rahes and thickened elephant skin all over is still going on. But I have faith it will go, I used topical steroids for 19 years, since the age of 3… A few questions I have… 1) after tsw do some still have eczema all over or is that still classified as tsw? 2) you say about eczema just being in the crease’s of the arms/legs but what about hand eczema and facial eczema etc?

[@Rebecca236]

I wonder if it burnt out because there were no alternatives. (I mean this in a good way) Absolutely no-one I know over 50 suffers from this skin condition. This makes me think I have been in Topical steroid addiction since I was about 10, without knowing it.

[@camilleleblanc8422]

Hello! Than you for those captivating talks. I have 3 questions for Dr Marvin. 1. It's There a database or list of doctors or health professionals that know about TSW? I'm in AZ. 2. Do you recommend red light therapy? I'm almost 4 years into TSW . 3. A couple months ago I started using numbing cream to relative the itch between my to5es. After a couple of weeks, my skin started flaring badly. I checked the inheritance Could there have been hidden steroids in the cream? It s called numb Master . What happen to the skin if using topical steroids after years of withdrawal? Thank you !

[@marvinrapaport228]

You need expert care , not "roadside consultation " telemedicine consultation is available

[@07jackg]

What are your thoughts on using topical tacrolimus to reduce symptom intensity during TSW?

[@marvinrapaport228]

valueless

[@07jackg]

@@marvinrapaport228 Ok: from my understanding, the drug you put some patients on is (like tacrolimus) also an immunosuppressant; if that’s the case, why do you consider the use of tacrolimus valueless in reducing TSW symptoms?

[@marvinrapaport228]

@@07jackg Protopic (tacrolimus ) is a cream at a strength of 0.1 %. The dosage orally is 300 mg a day - . You figure it out -- the cream is weak, weak, weak - does nothing. Near the end of the oral tapering process, I might, if a little dermatitis is still evident in the area around the eyes, use the Protopic there -

[@Rebecca236]

@@marvinrapaport228 This is so interesting as most people online credit it with giving them a worse withdrawal than steroid creams.

[@Rebecca236]

@@marvinrapaport228 This is very interesting about using Protopic around the eyes. Thank you. 🙏

[@MrFernandobeni123]

Im wondering how would dr Rappaport explain when babies who have eczema use a steroid for 10 days and then develop full body TSW that lasts a year, if steroids are so perfect and safe of course

[@Urban57621]

Also is there a relation to skin biopsies of Atopic Dermatitis? My derm said that underlying you have eczema as the deep down layers show AD. Is this true or are skin biopsy not accurate as steroids have damaged many layers?

[@chrisspots]

He addressed this in the next interview. strange thing is, it sounds like he only recognizes eczema as behind the elbows and knees. anything else is not eczema to him.

[@ma.theresatalavera8844]

Hello Dr..I have been taking TS for 6 months now.i stopped it only now because it will heal for a while then comes back more itchy.Now I have rashes/ itchy also in my butt.again in my legs and my back.I m also suffering from head scalp bumps and sore snd itchiness.2% ketoconazole and .01% fluocinolone oil in my head.im si helpless now and confused and anxiety started to linger now.I dont know if this still evzema or TSW? Im new hear in US .Been living here for 1 and 1/2 yrs now.I noticed my dermatitis became worst.I have been diagnosed with contact dermatits 12 yrs ago.Pls.help me.Its been on and off for many yrs. 15.Now im also having nummular dermatitis

[@marvinrapaport228]

You need better medical care. - you cannot use any steroids at all from any source- -scalp ???

[@marvinrapaport228]

telemedicine is available

[@bradleydavid4919]

Hi doctor, I was using Protopic ointment for about a year to control flares on face from TSW. however is there a chance of an addiction to this drug too? Or any other serious side affects? Thanks

[@marvinrapaport228]

Addiction???- just the opposite- it doers not do very much good at all - too weak- and it burns and it is expensive -a waste of time and money -YOUR MD thinks it works and you see nothing after a year - very poor monitoring

[@Rebecca236]

@@marvinrapaport228 This is so interesting as most people online credit it with giving them a worse withdrawal than steroid creams.

[@garethwebb1267]

I had eczema as a kid and it cleared up, no steroid use, came back at the age of 32 - same places - folds of arms and backs of knees - are you saying there's no real adult eczema at all? I went through TSW 3 years ago after years of steroid use, cleared up after a year and the eczema too, now the burning and intense itch is back almost as bad as before, my GP is open to the idea of TSW but was wondering why it's happening again after all this time after being clear. How would you explain this to them?

[@marvinrapaport228]

4-5 years for total cure - thousands of patients same pattern - you had a momentary "honeymoon "

[@VickyG442]

Can you give your opinion on rinvoq for TSW?

[@Paul-qq7mh]

Rinvoq didn't help me at all.

[@karenmyers3444]

I had adult "excema" ....at 58 years old I found out it was Dermatitis Herpetiformis, caused from gluten. Sorted that and then had to deal with TSW. All this by myself. Doctors are not that knowledgeable.

[@marvinrapaport228]

no such scientific entity as gluten causing TSA. In 40 years ,I have not seen a case of herpeticum- mis-diagnosed repeatedly - you haveto fine better trained MD's

[@Shuba96]

How does it come that i had clear and good skin during month 5,6 and 8, then month 9 evertyhing went bad again

[@marvinrapaport228]

you have no control- up and down but always better for 3-5 years

[@marvinrapaport228]

It was a "honeymoon "

[@tpb1006]

I applied TS on face and I was affected on face. I am 4 years TSW and it got me hair loss on beard in patches. Is this an affect of TS? Or am I facing some other problems now?