Meet Dr. Rapaport's Interview Partner, John: A 5-Year Topical Steroid Addiction and Withdrawal

[@Urban57621]

Great video Dr Rap & John. You should interview more past patients!

[@Paul-qq7mh]

agreed

[@JenniferBach-eu1pm]

Love this interview. I’m 4 years TSW and hearing these stories from NORMAL people sharing their experiences and being vulnerable helps so much. I would love to see a video talking about the other less discussed side effects of TSW, for example eye complications.

[@MaxvanLeeuwen-mt3wl]

I love the roll reversal. Thank you John and Dr Rapaport for your videos. I am at about 4 years tsw after 57 years using topical steroids with many low points. Your words "you will be cured" mean a lot.

[@FarhanFaruqui]

Thanks for sharing your story John. It is amazing to see you doing so well after we seen your story in the Skin on Fire documentary. Breaking down the details like 9-12 daily showers and taking almost 2 years for the skin to look presentable are truths many of us needed to hear. This was a great interview and we hope to see you both continuing to bring light to this iatrogenic condition. You and Dr. Rapaport are doing an incredible job creating awareness for TSW. THANK YOU!

[@cheryls2angelschicdonecheap]

Great video thanks for sharing my daughter went through the same thing made her have a bone marrow biopsy saying rule out lymphoma. Insane they can’t diagnose TSW and not severe eczema and lymphoma. My daughter lived in the bath tub and still loves it how NMT people swear by she could never she need to feel the water and relief from it.

[@marvinrapaport228]

OUTRAGEOUS , THAT IT SEEMS THE MD'S ALMOST WANT YOU TO HAVE LYMPHOMA - SINFUL

[@patm01]

Sounds like your doctor clearly didn't know what he/she was doing. If "they" wanted to rule out lymphoma, instead of going to an extreme with a bone marrow biopsy, they could have done a skin biopsy and flow cytometry which is standard protocol.

[@marvinrapaport228]

@@patm01 You are quite accurate. . But in my experience with approximately 20 of these patients, multiple skin biopsies , despite, NOT DEMONSTRATING ANY LYMPHOMA CELLS , they still pursued se2arching with lymph node biopsies, extensive workups and despite finding nothing continued to frighten the patients that it would "show up later "- poorly trained

[@patm01]

@@marvinrapaport228 Poorly trained doctors not only harm patients but also pass on bad information to medical students they instruct or train who will go on to harm even more patients.

[@cheryls2angelschicdonecheap]

Exactly they went based off her lab tests which where all out of wack from TSW and they insisted in order to go on dupixent they had to rule this out which seemed insane to me but at the time my daughter was desperate for relief fast forward to today and what I know now I would have never done that nor the wasted time on dupixent.

[@garethwebb1267]

'none of it's bad, none of it's weird, you gotta do what you gotta do' and then in the next breath knocking people not applying any moisturiser who find this approach easier on their skin. At no stage during this process have I found taking showers comfortable or using moisturiser comfortable, I've found it a lot easier to get through the day just by leaving the skin alone - I refuse to give it a name like 'moisturiser withdrawal'. There were times I lay for hours in agony after taking a shower, many others are the same when it comes to water, no way is everyone taking 12 showers a day.

[@lindabart]

I totally agree.

[@patm01]

No one said "everyone" is taking 12 showers a day. One person said it and many said water helped. I took 4-5 showers a day followed by Cetaphil and Aquaphor moisturizers and that is what helped me for a few hours.

[@garethwebb1267]

My point was there are plenty of those who don't get any comfort from moisturising, showering and lying in the bath, there's not a one size fits all for this, but they are dismissive of those who choose not to use moisturiser for their own comfort and call it 'wrong headed thinking'.

[@oneducktoe2389]

I think the term "moisturizer withdrawal" comes from someone ( a dr. or a group maybe) who advocates no moisturizer whatsoever for TSW. My guess is that Dr. R is saying that telling someone NOT to use moisturizer isn't correct because some people really may benefit. For me, once I found one that didn't burn like hell it helped, and so did showers but there were also those days that I left my skin alone too.

[@patm01]

@@oneducktoe2389 I completely agree with your interpretation of what Dr Rapaport said. Like you, I went through many moisturizers (30) before I found the right combination (of 2) that I used after showers.

[@oneducktoe2389]

Hey guys, John, thanks for sharing that. I lost a good friend during my TSW too. Same kinda thing as far as not doing things I enjoyed or wanting to be seen because of swollen dry, peeling face and swollen eyes. Lots of shower time for burning and itching. Could only wear super soft clothing. All of that. I still have an RX that I will never be without too. Also Dr R. is very good at listening and being supportive which helped me a lot.

[@lilincoopr]

Love to you both, keep up the good work!! Thank you for always telling the raw truth #nofilters

[@Paul-qq7mh]

Wow!!! So this is John from Skin on fire...

[@worer850]

I didn't realize he was filming the other vids

[@dt261]

Thank you both ❤

[@Paul-qq7mh]

This is an excellent video just what i needed to hear.

[@patm01]

Great interview by interviewer and interviewee. I was taking 4-5 long showers every day. Water was what my skin was craving. I followed it up with moisturizer. After going through about 30 different lotions, creams, gels, oils, serums, Cetaphil with an overlay of Aquaphor worked best for me too.

[@JulijaMlakar]

Same! My favorite cream- Aveeno Dermexa and Vaseline 🧴

[@breannamedek9186]

How long did it take to heal?

[@patm01]

@@breannamedek9186 I cannot put a definitive timestamp on it because it waxes and wanes and gradually is gone. If you haven't watched Dr. Rapaport's videos from the beginning, it might be helpful if you do so. He's often given a range of between 3-5 years. Everyone's timeline is different and it could be sooner.

[@DOTS65DOTS65]

Hello John Mike from Boston Here. 2 years TSW

[@karenbruns4355]

You too are awesome for sticking your situations out there! Dr. Rapaport You are a Godsend and you both CARE which means sooo much! Love everything you have done for the TSW community!! 💪💪💪💪I can't thank you enough!! ❤

[@marvinrapaport228]

it is the TSA/RSS community -the therapy is withdrawal . The withdrawal 's need is because the MD's made them addicts

[@isabelle-nv7yw]

Great video again, thank you John and Dr Rapaport. Question for John : when you stopped cyclo you were at what month TSW? did you flare? How did you taper?

[@JulijaMlakar]

Dr.Rapaport tell me your opinion. Dermatologists say that if you use proactive steroid therapy (2 times a week), then there will be no withdrawal syndrome. But it seems to me that this is a direct violation of the instructions that steroids should not be used for more than 2 weeks. That is, that the doctors themselves make us dependent? Proactive steroid therapy may be prescribed for 4-6 months.

[@marvinrapaport228]

they should undergo re-trainiing - so ssad- they must hold on to their toy

[@JulijaMlakar]

One more question about methylprednisolone aceponate. One dermatologist writes that it can be used for 4 weeks for children and 12 weeks for adults and is not absorbed into the bloodstream, so it is safe. And it can be used on the face of children (cheeks). It's again something misunderstood with TSW?

[@marvinrapaport228]

THIS DERMATOLOGIST NEEDS RENEWED TRAINING - HIS THINKING IS PREPOSTEROUS - ESPECIALLY IN CHILDREN -- WHAT IS HE TREATING ? WHERE DID HE TRAIN ?- STAY AWAY FROM HIM

[@Natbean26]

warner bros? we need netflix! 😄great interview, very insightful

[@irisvallianos1521]

Ahaha.. cold showers for me. But really I upped my showers to at least 2 a day. Feeling much better after a shower and applying some aquaphor making a big difference in pain relief when moving. No moisture treatment I tried for 2 days and was in pain and immobile . It hurt to just move. Also I thought I had an infection so after explaining to my derm that I didn’t want steroids I got a prescription of cream antibiotics but found out it was laced with a strong steroid.. ugh I feel that I am back to square one. Getting red in my face and prickly sensations . I don’t know how far back this set me back but 9 months into TSW I was feeling much much better from redness and prickly burning over my body (especially neck and face ). Tried phototherapy but had some open wounds which turned into 2nd degree burns. So no phototherapy if you have open ozzing wounds.

[@nirmalm4296]

Why ain’t anybody talking about weight loss while going through TSW ? For me it’s 3 .3 years already ( with 2 episodes of oral steroids in between ) as I couldn’t get through . But now skin has calmed down by about 30 percent ( only ! ) . But the weight loss is more concerning now …

[@songwritersshed3207]

Fantastic! I also discovered hot showers and baths very early on as my only chance to peace. Everybody was advising me against it - my body told me what to do to dtay alive.

[@marvinrapaport228]

Many things make you momentarily good or even bad to worse.- usually "short-minded" - none of these items go very far . Sharing these fleeting benefits is kind, but many patients expect much much more, especially when the travail lasts 3-5 years

[@nhtathinfbntb2746]

Interesting, showering was uncomfortable and dries out the skin. Super itchy after.

[@patm01]

Did you use a moisturizer after the shower?

[@marvinrapaport228]

you need help and proper medical advice -- the internet does not offer truth

[@nhtathinfbntb2746]

@@patm01 i found that moisturizing helped but it still gets itchy. Definitely less itchy with moisturizer though.

[@JLX1373]

To hear that John is still flaring makes me concerned - will the flares eventually go away completely?

[@marvinrapaport228]

he is not flaring and has not in over a year -- listen more carefully

[@JLX1373]

sorry, maybe I misheard. I thought he said his flares are minimal and "invisible to most people" but that still seems like there are flares@@marvinrapaport228

[@bigwavebobby]

I am no longer flaring.

[@bigwavebobby]

This is John the way. No more flares. It's over.

[@worer850]

Showering made me much worse.

[@patm01]

Did you use a moisturizer after the shower?