Conversation #5 with Dr. Rapaport. Forget the false cures for Topical Steroid Addiction

[@hey.its.kenners]

So addicted to these interviews! Definitely doing the lord’s work! Thank you guys so much!

[@marvinrapaport228]

thanks

[@TheStyleAlert]

This man has changed my life. Haven’t touched a steroid in 7 months and am doing fantastic! Yes, had to endure terrible flares on and off but boy am I glad I have learned about TSW

[@marvinrapaport228]

It can be a long process- be patient -get medical help

[@VickyG442]

These videos have been so helpful to our psyche. Dr Rapaport and yourself bring us comfort with these videos. Thank you both.

[@patm01]

Another very informative interview in the series that should be included in medical school cirriculum. I was 15 months into TSW when I learned of you from a derm who I had seen several times in addition to 6-7 others. He confidentially suggested I contact you. Prior to that, I had several biopsies at different facilities that indicated spongiatic dermatitis, which you spoke of, in addition to a flow cytometry. After going through 15 months of TSW hell and still in it, the last thing I needed to hear was that I had Mycosis Fungoides, T-cell lymphoma = cancer. Blood was clear but because of how my skin presented, a few stray bad cells that sources say harmlessly circulate in many people, and dismissing TSA/W, "they" put me into a state of despair. But you guided me. My skin cleared. "They" overreacted and I suppose erred on the side of caution and their self-protection. There was no MF! It's frightening to think of how many people are being treated for MF with topical steroids and cancer meds who really do not have it.

[@marvinrapaport228]

How is it conceivable that one diagnosis can be visited by so many misinterpretations, poor judgements, wrong medications , years of misery and bloated egos from the pharmaceutical companies and MD's that they are "helping " bad eczema patients

[@patm01]

@@marvinrapaport228 I believe no one knows better than you. My responses would be 1) Pharma: consumed by making money and avoidance of responsibility or being complicent in something potentially harmful if used improperly, 2) Doctors: refusal to accept or learn anything that differs from what has been or was standard protocol or what they learned in medical school or what is not promoted by the AAD (their leader), refusal to admit they may have been wrong in their diagnosis or that they just don't know what to do as the patient keeps getting worse and so then prescribe the stronger stuff and/or possibly refer them to a dermatologist/oncologist for biopsies and more. Lives ruined!😠

[@marvinrapaport228]

@@patm01 Something is definitely wrong , if tens of thousands of patients suffer daily . This reality , 2 or 3 deaths , outlandish drug pricing, patients running away from traditional medical care, Academies of Dermatology in various countries not recognizing this medical problem , 20 new medications (for profit ) having been studied for this entity carrying an absolute wrong diagnosis , doing dangerous drug studies on the unsuspecting , no reports of any cures in at least 5 years, and a host of MD's from august institutions who were paid enormous sums of money to study patients and give lectures. And with unbridled audacity , the drug companies are advertising on national TV at prime news times with no positives other thasn smiling happy faces - no positives ,because the original studiers never showed any positives

[@patm01]

@@marvinrapaport228 Smiling faces in pharma TV commercials = paid actors.

[@marvinrapaport228]

This forum should also be told that there are several patients out there ( I have heard from them) who are carrying a lymphoma diagnosis falsely and getting inappropriate therapy

[@anelapusara2723]

Thank you Dr Marvin for these videos! I have suggestion to crop these videos in smaller parts and put it on TikTok. There you can have much more impact because of the numbers of people out there. I am a pharmacist from Serbia, Europe. I've been using steroids for 28 years and now I'm 3 years in TSW. I am trying to speak up about this condition in the media and also in my pharmacy with my patients. Two years ago I was in the TV show speaking about TSW and then there was one dermatologist who said that I was guilty for my addiction because I didn't use it in a proper way. You can emagine what they are saying to ordinary people in their office, they are gaslighting them all the time and make them believe having the bad eczema... I wish we had more doctors like you all around the world!

[@marvinrapaport228]

Good suggestion- will ponder

[@marvinrapaport228]

We started 10 minute vignettes published weekly - 2 weeks ago . The anger from so many patients is overwhelming - I aim to cure everyone and send all the truculent MD's back for more logical training coupled with psychotherapy courses

[@learninglifeways]

one of the most valuable 46 min of learning and understanding of the matter. Thank you sir thank you sir I would like to be able to help and become a part of this movement. Please suggest

[@marvinrapaport228]

tell patients on these sites to stop advising false cures and inappropriate advice. Tell your doctors to look at films. Spread the word . Do not take the "new " medications- valueless and exorbitant in price

[@fionaoldrey2738]

I am going through TSW and your videos have helped me stay strong and positive, thank you .😊

[@dzmachine]

Honestly, though, I did use Dupixent and for me it change my life.But came down with squamous cell carcinoma and they took me off it. Unfortunately with my chemo include intravenous steroids. I started to get my rashes back so to use the steroid cream and now my whole entire body describes exactly what TSW is I am like textbook for 30 years. I’ve been dealing with this and nobody knew what this was, including myself.

[@Urban57621]

Thank you Dr for another informative video. Its horrible to see the depths sufferers are going to as you mentioned with all the diets and changes, I think they know deep down too that its just time but that time is going to be SO SHOCKING that we loose hope 😢 And most do not trust immunos AT ALL. Could you do a video on immunos and how they can actually help, cyclo is not an option for everyone whereas the injections were the only thing to allow me to come off steroids. Its a tricky situation and we are so DESPERATE for adknowledgement and real help from our derms who have wasted lifetimes!

[@marvinrapaport228]

"Just time " is not in my playbook- there are many medications that allow the withdrawal patient to endure, live , sustain and function- must seek medical care from an MD

[@VickyG442]

I too am getting annoyed when I share photos of where my TSW mate is in his recovery and am questioned about gut health. He has done it all with exception of carnivore. We wanted to believe we could control TSW but at 14mo we realize TSW does what TSW does.

[@F_Arrow95]

There are videos about this too. Makes you second guess everything. People think tsw and eczema are the same and should therefore be tackled the same but I don't agree.

[@VickyG442]

@SH 95 it makes people who are struggling in TSW on ITSAN page unfairly think they are to blame for not being healed thru a special diet. I was holding my tongue and taking the advice but it's really not cool.

[@F_Arrow95]

@@VickyG442 Totally. I'm on the itsan page and don't find it helps me much anymore. I only stick around to reassure others and offer advice when they are struggling.

[@VickyG442]

@SH 95 hearing you feel the same, I'm going to take up to counter those posts so a much needed group doesn't become a product push page.

[@cheryls2angelschicdonecheap]

How do we hold these dr’s responsible for our misery. They are the ones telling us to take it lather yourself in these steroids etc.

[@JulijaMlakar]

Hello Dr. Rappaport. I would like to share my treatment. After 2 months of TSW, I went to a dermatologist. I was prescribed Cyclosporine and Protopic. As soon as I take out Protopic I flared up even on Cyclo. 6 months on Cyclosporine were unsuccessful. Then there was Dupixent for 6 months. The same thing. The deematologist sent me home to await confirmation of the Janus Kinase Inhibitor. Again half a year already without treatment. Terrible summer .But most of red skin gone from the body. But the face and neck are terrible. Since the beginning of December I have been on Rinvoq . Finally it works. Everything cleared up within a week. This is my first month of treatment. Side effects : strange tingling pain in the body, especially back side, numbness of the legs, then the hands. Haven't had a blood test yet. I'm afraid of the black box. I hope you will be interested in my treatment.

[@Paul-qq7mh]

Ive tried Rinvoq and it did not help me. Cyclosporine is the only thing that helps me.

[@JulijaMlakar]

@@Paul-qq7mh Maybe it has something to do with what was tried first? Cyclosporine and Dupixent did not work for me. Again always prescribed Protopic for the face to cover up. As soon as I take out the Protopic, then drug -Cyclo or Dup not worked . I told this to a dermatologist. But the dermatologist didn't care. Then I stopped Protopic when I was on medication and unfortunately the drugs didn't work. I let every drug work for 5 months without Protopic, but nothing has changed. For the last 6-7 months I have stopped putting everything on myself and not take drugs. But my face was still inflamed. After Rinvoq everything cleared up. But the elephant skin still left on the eyes. Of course, there is a possibility that I will become tolerant of Rinvok as well. But I need to get through the Withdrawal Syndrome for as long as possible. In February there will be 2 years of TSW.

[@Paul-qq7mh]

@@JulijaMlakar Good luck with it all.

[@JulijaMlakar]

@@Paul-qq7mh thank you 👐

[@bigwavebobby]

Dosage of Cyclosporine? My guess is that you had an overly cautious physician.

[@dzmachine]

Thank you for all of your information

[@angelsloft8286]

It is very nice to know you care, my doctor and derm dont. wont even prescribe something to help me sleep.

[@marvinrapaport228]

The Md's have become afraid af everything- malpractice , patients, the Feds, the pharmacists- afraid of being accused of "pushing " addicting meds , in addtion to not wanting to worry about any patient- no matter how mush they are suffering . The patients have become an enemy . It is so very sad - this perfect liason has turned into a nightmare for patients and they turn to PA's, chiropracters, naturopaths ans all forms of scoundrels for help . If you ask for a sleep med , the cMD thinks you are an addict

[@CatS2288]

Thank you for these very insightful videos and thank you Dr Rapaport for your wonderful work and support, it’s such a breath of fresh air to have a Dr acknowledge what we’re going through is real and we’re not simply mismanaging our severe eczema. I’m almost 4 years into TSW and I’m still flaring and still suffer from many other symptoms, insomnia being the worse. You’ve mentioned on a few of these videos that typically tsw lasts 3-5 years, I’ve seen many people on tsw communities say they’re 8,9,10+ years into TSW and still flaring and even saw one post where a Derm said that for some people it could last a lifetime and they’ll never heal. I’m intrigued what your thoughts are on this? Can tsw last 10+ years? Is it possible that some people don’t heal?

[@marvinrapaport228]

You need medical care and help - why suffer ??

[@rosequintieri9393]

In my 5th month TSW. It's a very long & difficult journey. It's made me even more anti Big Pharma.

[@marvinrapaport228]

Worse- they influence the MD's to write Rxes and the MD's do not read new articles and the patients believe in Moisturizer withdrawal and leaky gut - an astounding group to blame and vilify

[@joannehahaha]

🙏please carry on your fantastic work 🫶

[@marvinrapaport228]

Please tell the doctors to wake up and stop harming patients

[@joannehahaha]

@@marvinrapaport228 🙏My son is suffering with topical steroidal withdrawal and severe Red Skin as a result of the over prescription of steroidal creams/ointments from the ages of two until age twenty two years of age. We have followed your advice through this unbelievably stressful traumatic process continually endeavour with your genuine understanding and positive informative guidance of this malpractice which gives hope for the future of our future generations.Your expertise regarding the shameful disgrace of over prescribing (use not abuse)being allowed to continue 🦋 His blistering was as you brought to attention was possibly also misdiagnosed as herpes treated with acyclovir tablets and cream. We reside in Scotland although we are enthusiastic in further advice from your good self as to what you would propose as to how we progress during this traumatic journey both mentally and physically. Respectfully yours Joanne Young 🙏

[@nirmalm4296]

So what about diet ? Does it not matter at all till we are over to the other end of the field ?

[@F_Arrow95]

Keep up the good work! Can you talk more about the dry skin/shedding of skin during tsw? Some say it's down to the damaged skin from steroids and some say the sebaceous glands are damaged by steroids. Curious to know why it happens.

[@marvinrapaport228]

just like a sunburn- dead skin being shed- as simple as that - no permanent damage- nothing to do with adrenals

[@F_Arrow95]

@@marvinrapaport228 Seems to go on for a long time though and some remain dry even years in. I thought perhaps it's because of the oil glands being affected.

[@marvinrapaport228]

patients with atopic dermatitis have overly dry skin as part of the inheritance

[@prestigephoenix2314]

Hi, I’m nearing ten years TSA. I have flared hard again. Red, oozing, swollen and bed bound. This has happened every year without fail and I’m exhausted. 15 years topical steroid use and 1 course of prednisone has put me in this position. But I’m so defeated and just need to know that I will get better. Why is this still happening to me. I’m 2 months into this flare and it’s still going strong. Can anyone help please!!! (Dr Rapaport)?

[@marvinrapaport228]

You absolutely need medical and oversight . Telemedicine consultations are available . Please contact Kristina at [e-mail] or other sources - inappropriate to suffer

[@prestigephoenix2314]

@@marvinrapaport228 thank you for replying. I will email now. I appreciate your help

[@JulijaMlakar]

And I have another question. If the TSW passes under it, will there be an underlying disease due to which they began to use corticosteroids? How to understand that this is already eczema, and not TSW?

[@marvinrapaport228]

90- 95 % have atopic dermatitis, the rest have psoriasis, seborrheic dermatitis, photo problems ,vulvodynia ,red scrotum syndrome

[@worer850]

GOAT dermatologist

[@marvinrapaport228]

WOW

[@worer850]

I'm back again, doc.. I'm in Toronto, Canada. Just arrived back from the hospital. I went to emergency..doctor was nice enough he listened to me..Didn't offer me steriids., but refused to give me cyclosporin. He referred me to a rumitologist. He did give me sleeping pills and got my blood taking for kidney function.. I can't be too critical of him since 2 days prior to that, my derm offered me more steriods.. I don't understand how they can be so clueless.its mind-blowing, really. A blind man could feel my wrists and arms and eye lids and tell me it's not ecema .I'm doing all this while taking care of my father with late stage alzhiemers. Working up a sweat changing a dirty diaper. The height of sadness really..

[@dzmachine]

Has prp or stem cell with micro needing ever been tried to accelerate healing of the skin

[@leslieg453]

Could you do a video for those of us who actually have excema? I only used steroids for 2 weeks and stopped after it came back after the 2 weeks. And I am, after 4 months, still getting worse and worse. I have tried so many other topical itch creams, antihistamines, and Hydroxyzine HCL. What should I do?

[@marvinrapaport228]

sunshine, lubrication, - cn carefully use middle strength topical steroid ointment twice a day for 3 days , repeat in 2 weeks if needed- sun should be available soon

[@miguelteran-raful2718]

Can you list the medications Dr. Uses to treat eczema? I know he mentions some medication that is use to treat poison IV etc. That would be very helpful video.

[@marvinrapaport228]

NEEDS TO BE EVALUATED

[@cathyshaw906]

Hi , how do we go about reaching Dr.Rapaport

[@bigwavebobby]

His email address is in the video description.

[@stayfreshrhys3892]

How do we know if it’s just a “honey period “ or actually close to being healed??

[@marvinrapaport228]

When you study medicine and see scores of patients with same problem , you get very good at the timing of therapies etc. That is why Medicine and science are exciting -patterns are carefully monitored and if something does not "look right " it must be another diagnosis or deeper thinking is needed -

[@stayfreshrhys3892]

@@marvinrapaport228 yeah I understand… I have improved since the start , living more etc but I also do feel so stagnant, parts of my body especially my hands are still so bad.. this process feels never ending… when you say another diagnosis this has me extremely anxious. So it could just be severe eczema??? I have emailed you for a telemedicine consultation

[@marvinrapaport228]

@@stayfreshrhys3892 I am awaiting your request- never received- so sad that you ae wary

[@Paul-qq7mh]

I Have tried everything from Trials to Rinvoq. Cyclosporine is the only thing that helps me. I have currently been on Cyclosporine for 3 years 350 mg every time I ween off, I flare. TSW is Horrific.

[@JulijaMlakar]

What dose did you start Rinvoq with? Dermatologist gave me 30mg and it worked . I took cyclosporine 100 mg twice a day. Maybe that's why it didn't work.

[@Paul-qq7mh]

@@JulijaMlakar It was a little while ago now but im pretty sure it was 30 mg. I took it for about 6 months and during this time my skin was constantly shedding and flaring...

[@VickyG442]

How many years will you remain on it until you start to taper off?

[@Paul-qq7mh]

@@VickyG442 Hi Vicky I assume you're talking to me. Not quite sure l just have to experiment and hopefully in time i can ween off slowly.

[@VickyG442]

@@Paul-qq7mh I hope you can come off it without flaring eventually. Happy New Year!

[@marlonraja6671]

Thank you for this interesting video. I'm curious why can't cyclosporine be used from the beginning for a tsw patient if it's so effective in managing severe symptoms rather than a last resort? On another note I use the NMT protocol as it has a logical theory behind it in my view in retraining the adrenal glands, it's doesnt cost anything so it gives more credibility and largely it appears to be a successful tool for individuals who are inpatients at Dr Sato's hospital or others who document on social media. Its interesting that Dr Rapaport seems dismissive of Dr Sato's work when he speaks of moisturiser withdrawal. It would be interesting to know what his thoughts are on Dr Sato and his work. As much as I appreciate Dr Rapaport and his humbling compassion for his patients I personally believe you need to give importance to holistic strategies that impact on lifestyle such as breathwork, diet, exercise etc and not just treat symptoms in isolation with other drugs. Just my opinion and there is no one right way and I wouldn't dismiss the approaches others take because we truly don't know enough about this condition and are bodies are not all the same I would argue.

[@marvinrapaport228]

That is why you go into good training programs, so you do not give inappropriate medications at the wrong time or to the wrong patient--- "cause no harm "

[@Momina213]

I am in my 11 month of TSW of face. How I end up there? Got acne due to mask and dermatologist gave me mometozone forate. My spelling could be misspelled. I used it for 6 months off and on but it kept getting good to worst. Then dermatologist said it was acne rose… then put me on ivermectin. Nothing worked. Burning red and stinging.many dermatologists made fun of my condition that depress me and my condition was very bad but I decided to go cold turkey and started to heal on by the will of God naturally. I am much better now but not out of it yet. I need help from Dr. raptor My issue is thin skin, small bumps, redness with hot and burning face. Hot flashes of just face. All that I was going through. Heat does exacerbates and cooling makes it go away quickly easy. I am overwhelmed to type but need to talk to someone who can understand me and make condition. This video gave me hope I will be eventually heal. I am from an Indian descent brown and in India people use steroid for fairness but that is not in my case my skin was good mask and acne which I never had in my teenage either made me do crazy stuff from exfoliation to using TS.

[@marvinrapaport228]

telemedicine available

[@Momina213]

@@marvinrapaport228 Will connect with you soon doctor.

[@marvinrapaport228]

@@Momina213 I will be pleased to help and bring you to cure