Conversation #1 With Dr. Marvin Rapaport. Red Skin and Topical Steroid Withdrawal

Feel free to contact Dr. Rapaport Directly. [e-mail]
This is the first in a series of Discussions With Dr. Marvin Rappaport, MD. Topical steroid withdrawal and Red Skin Syndrome.
Please leave your comments and questions below.
If you are new to TSW, the following might be helpful.
• Skin On Fire

[@Alex-Road2Fire]

Thank you Dr. Rapaport for getting my life back, better than ever! You gave the right diagnosis and the right treatment!

[@tsmk6599]

What helped you? I'm going through tsw

[@jh335]

Almost 3 years in TSW now. Watching your videos from the Netherlands. Bone itch, oozing, flares, sleepless nights, it is terrible. I never regret my decision to stop using topical steroids though. Zolpidem for sleeping and levocetirizine for the itch is what support my normal social life.

[@MrsLEngel-zb6tr]

Dr Rapaport is right on target. After seeing numerous health professionals and fighting every dermatologist, allergist etc. trying to explain how all my symptoms are TSW, they made me do every biopsy, blood test, etc, and still are trying to come up with an alternate diagnosis. I am 4 years in and just flared my worst ever....back on cyclosporine for a while. Thank you Dr. Rapaport for your efforts in helping all of us and the world!

[@cosmicgamernews]

15 years of TS and I started TSW 2 weeks ago, I wil get thru this! Vaseline and Dead Sea salts are keeping me functioning. Thank you for the videos Dr Rapaport.

[@marvinrapaport228]

Please seek out medical help- withdrawal is very difficult

[@cosmicgamernews]

@@marvinrapaport228 seeing dermatologist in 12 hours hoping to get help managing the burning thanks again for your efforts.

[@marvinrapaport228]

and what happened - you need expert care

[@cosmicgamernews]

@@marvinrapaport228 im am now on week 12 and the burning has subsided, the dryness and flaking is going full swing. Only meds i was given was telfast for the itching, no sleep aids. Sleepaids cant be given by gp in denmark. Im on sickleave and the reason is actually withdrawal from hydrocortisone. Ive had 1 skin infection on lower right leg and at the moment im deaf on the right ear because of a swollen ear canal.

[@goddessexy690]

Still here keep fighting!!! I will win over this TSW❤️ so let's do this... Don't lose hope guys!! Be stronger 🙏❤️❤️❤️

[@marvinrapaport228]

I believe it is time to stop "fighting " and being "warriors"-- you need medical help since you have at times up to 5 years of symptoms

[@goddessexy690]

@@marvinrapaport228 yes it's true now I'm using cream for my skin but no steriod and it's works soo good thank you for help is for this awareness ❤️

[@thefirstcut]

such an important video. dr rapport is the epitome of kind and compassionate healthcare. please share

[@beckyroop2056]

I would like to say, the person doing the interview is amazing, asking questions and understanding the issue. Great job thank you for your work!

[@Paul-qq7mh]

Yep his asking the right questions

[@gemini060477]

My 8 y.o. child is currently on her 4th month off topical steroids and is having RSS. I called Rapaport Dermatology in Beverly Hills hoping to set up an appointment with Dr. Marvin himself, but I was told that he has retired. My child was then seen by a Physician’s Assistant. But I really, really wish Dr. Marvin would see my child, even for just 1 appointment.

[@karenbruns4355]

Your support is golden to these suffering patients Dr. Rappaport!! My daughter has been going through this for at least 4 years!! Your immense, eye-opening knowledge and loyal support have been such a Godsend!! I cannot thank you enough!! ❤

[@marvinrapaport228]

my pleasure- I find it perfect when patient's are cured

[@karenbruns4355]

@@marvinrapaport228 I'm sure it is so rewarding!! ❤️

[@marvinrapaport228]

@@karenbruns4355 The best thing about being a doctor is doing the doctor's work and seeing the cure

[@patm01]

This interview is very informative with everything coming directly from you without filters or deflections. I think it's the most comprehensive of any that you've been involved in this year and yet simply structured with one-on-one questions and thorough responses. 👍

[@marvinrapaport228]

thanks- need to get MD's to listen and change their treatments

[@barbaraeich1387]

Thank you so much for your work and keeping up the fight, Dr. Rapaport. I found your info and it made my struggles for so many years make sense. It helped enormously. I'm now almost 4 years in and almost there. The interview was fantastic, so honest. The only other thing is there a way to get Pharmacies more strongly involved with flagging risky/addictive prescribing and informing patients and doctors. I used steroids for 40+ years and had multiple doctors but only 1 pharmacy for many years. I had no idea about addictive behaviour because nobody warned me.

[@dzmachine]

I was searching for close to 30 years with no answers. TSW is definitely what I have.

[@Urbanplann]

You have/are done amazing things for so many people suffering. We are so thankful! Can you mention your new youtube page on your official facebook please so all sufferers know you have a youtube channel. Also you should upload all the videos you have featured in

[@jakubnovak814]

I'm happy to see this new channel, subscribing and looking forward to next episodes! Thank you so much for continuing your work. This year it was 5 years since i stopped topical steroids. I would say i am cured from red skin syndrome/tsw. But I still have very dry skin and sometimes that makes it difficult to sleep due to the itch. Also I am currently dealing with upper extremity lymphedema which most probably arised due to the chronic skin inflammation. Overall I would say it is worth it to stop using topical steroids, although it may cost a few years of one's life spent in constant severe struggle to function at least partially in normal everyday life. Considering that the only other option is using topical steroids for the rest of one's life with the potential severe side effects, I would advise sufferers to undergo the withdrawal. But at least try to keep in touch with a dermatologist who respects the decision and can prescribe many helpful treatments (which I did not do and now regret shutting myself off from medical care and suffering unnecessarily much for the past years).

[@beckyroop2056]

Thank you for sharing info on this terrible condition.

[@marlenebenavente9845]

You’re One of My Greatest Hero’s! I wouldn’t of made it without you & you kindness. My Prayer is the Health Care Students, Doctors, PAs, Nurse Prac, Nurses, etc Seek & Learn from You & that tge don’t take the bait of monetary comps from pharma. You’re a blessing Dr. Rap & great interview!

[@karenbruns4355]

Have you written any books regarding this very important subject?

[@michellepark9275]

This video gave me all the hope in the world. Thank you thank you!

[@gina6413]

I developed mild Eczema about two years ago in only one area, my left lower leg. The cycle you've mentioned is exactly how it proceeded. The dermatologist started with steriod cream, cortisone injections, prednisone as itching progressed. It would ease up and weeks or months later, itching would start up again. A few months ago, the itching began in the same area but I panicked that it would come back, and had an acute anxiety episode that brought on itching all over my body for the first time. I soon realized I was having a panic attack (I'm a psychologist). Calm myself down with cold shower, breathing, and an antianxiety pill. I couldn't get into see the doc for weeks as the itching worsened and my skin became inflamed. I got into see another doc who immediately recommended 2 wk prednisone and wanted to begin Dupixent treatment after the sever inflammation went down. I'm questioning the whole treatment process and need for Dupixent. Please share your thoughts. It would be greatly appreciated.

[@bigwavebobby]

Watch Video #5 from my channel. Thank you.

[@gina6413]

@@bigwavebobby Thanks but couldn't find it.

[@Caitjules16]

I need help finding a dr in my area that will support me through TSW. 😢

[@Paul-qq7mh]

I've been on Cyclosporine now for about 2.5 years and when i tapper off i flare really bad just like you mentioned.

[@marvinrapaport228]

YOU NEED EXPERT MEDICAL CARE

[@lotfibouhedjeur]

Who else would kill for a voice like that?

[@marvinrapaport228]

???????

[@marvinrapaport228]

It helps when I scream and yell at non thinking MDs

[@lotfibouhedjeur]

@@marvinrapaport228 They deserve it. 😅

[@Germinal2313]

Great interview. My question is what do you suggest as an effective treatment for eczema as an alternative to steroids for adults who develop the condition? Is it just a waiting game like TSW?

[@michaeljensen5627]

Thank you!

[@shandaceretti]

I’m curious what your thoughts/ knowledge would be around this concept regarding Lichen sclerosis? Thank you in advance, it’s been a journey.

[@nocon911]

What are your thoughts on biologics like Dupixent? They seem like they have less serious side effects than immunosuppressants and cancer drugs, but still more severe than a lot of other drugs on the market. Thank you for your time and efforts to help so many!

[@michaelfriedlander4161]

What about NMT. I just can't wrap my head around why this would work. It sounds horrible

[@Dreamerz1234X]

Will we also be cured without never moisturising ? My natural oils all over my body are back but my chest/face is still so flaky & red. 3.5 years into TSW. Had CAP as well but symptoms returned. What about fungal ?

[@tabrez7974]

My scrotum was so itchy and burning like hell. I used sudocream, anti fungal and steroid creams but none of them worked and made my scrotum more red. I couldn't walk for 5 minutes. Coconut oil has helped me a lot with itchiness and burning. I've stopped treatment but my scrotum is very red and skin is thinner. What can i do to make it go away? What should i do pls help

[@lukespaulding1946]

Thank you. Question: What are the methods of dealing with edema in the ankles and knees?

[@katarzynapawelek2014]

I went through all discussions with Dr R here on YT, and I think Tik Tok series / randoms would help , more ppl is on it , a little suggestion …

[@bigwavebobby]

Great suggestion!

[@stephaniehartsock3417]

Could suggest cleansers and moisturizer to use while going through TSW?

[@orthodox4157]

What about suddent on-set in adult? No steroid but still going on after 5 yrs.

[@miguelteran-raful2718]

I wonder what medication he uses for swelling, itching etc? I know he uses antihistamines for itching and poison iv medication for skin opening. Any one with more details please share.

[@marvinrapaport228]

needs full evaluation

[@dzmachine]

Can micro needling and PRP accelerate healing of the skin

[@nohja]

any chance dr. rapaport has an affiliated dermatologist in hong kong? we would like to better understand his treatment methods for withdrawing from over a year of steroid cream usage, and what alternative methods to treat eczema in children.

[@marvinrapaport228]

telemedicine with me if needed

[@Wadebrowndrums]

Question for Dr R, how long is the healing time for those tsw who suffer with hands and feet?

[@Paul-qq7mh]

3 to 5 years maybe a little more depending on how long you used Topical Steroids

[@carolinamoreiradeoliveira4452]

Qual o valor da consulta por telemedicina?

[@marvinrapaport228]

in English please

[@krishnagde4685]

hey Dr. Rapaport is there any corelation between tsw and ige test? i have a high result is ige test

[@marvinrapaport228]

almost all atopics have elevated IgE and eosinophil levels- purely markers with no clinical significance - no workups or evaluations needed - your Md should know this

[@Urbanplann]

My only question is: Why when stopping the steroids does the rash spread all over, and to areas where you never or rarely used steroids on? And can tapering each body part at a time work? Cheers

[@Urbanplann]

Also people when coming off seem to have extreme hot and cold cycles and not able to control their itches either. Why is this?

[@marvinrapaport228]

the medication is absorbed and travels throughout the body

[@DOTS65DOTS65]

What are your thoughts on methotrexate?

[@marvinrapaport228]

dangerous- never worked on these patients- the MD's have used it for 60 years in a wide variety of dignoses, so they say "let's try it here"- that is called garbage medicine

[@marvinrapaport228]

You must realize that with 20,000 inquiries and hundreds in the past 1-2 years, i have heard of scores to hundreds of failures from taking Dupixent and all of the "new" biological medications - all failures- there has not been one published paper , also , of any of them curing one patient- scams ,advertising like mad - on TV, media and in MD offices- not just scams- outright scandalous with prices in the $ 40,000- 70,000 per patient per year and not cures "you will need to take this medication for the rest of your life "

[@VickyG442]

Thank you Dr Rapaport. My question is are side effects of the black box label of cyclosporin serious enough to not use it unless it is a very last resort?

[@marvinrapaport228]

It is an exceptionally safe medication. I have treated iver 850 patients with it and all, except those still in treatment, were totally cured , with obviously thetotal cessation of steroids

[@VickyG442]

@@marvinrapaport228 exceptionally safe sounds bold when told TS were safe and if TSW has taught us anything it's read the possible side effects.

[@marvinrapaport228]

Yes safe, when prescribed appropriately ,in the right strength, for the right diagnosis

[@worer850]

14 months of tsw was healing well then I got a ear infection and the drops has steriods in them its like my original flare , I am so upset I feel like I'm back at square one

[@marvinrapaport228]

you possibly did go backwards, but better times soon again - you need better care

[@marvinrapaport228]

ear drops, eye drops, nasal inhaler ,asthma inhaler , injections into joints , somr oral steroids after s little surgery ( makes you heal better ??? )

[@worer850]

@marvin rapaport it was called otic drops. It was terrible. Strange things is my face has done peeling and gone back to normal now after 2.5 months . A title dry on my eyelids still, but my wrist have gone red and flaky and on the top of my hands with mild elephant skin in my wrist and forearms. Strange cause I never had that from my original flare, nor did I ever have excema there. It's seems to be getting a little better. Just time, that's all.

[@MrTJG01]

Dr Rapaport mentioned patients who have needed to briefly take steroids during withdrawal for other conditions, I’m sure he said you can live with a flare if you get one, but it’s not the end of the world and doesn’t put you back to square one

[@worer850]

@Tom Glenwright the flare was worse that. The original tsw. Strange now it's moved to the tops of my hands.

[@nhtathinfbntb2746]

Aug 31 was my third year anniversary

[@marvinrapaport228]

typical cures are in the 3-5 year range - long time

[@nhtathinfbntb2746]

@@marvinrapaport228 my only problem areas left are my inner elbow creases, some of the lines in my inner elbows are red if you close very very closely under light. White dry patchy skin around the crease as well. Other affected areas on torso are white and dry after shower but my inner elbows are itchy everyday. I am from Canada dr rapaport, i am coming to LA in Nov, can I come say hi and thank you? I may schedule an appointment. My progress has been linear but slow. 3-5 years seems about right. My case was not that severe and im still in it after 3 years.