What is Topical Steroid Withdrawal? Conversation with Marvin Rapaport MD

[@208SkinDoc]

Updated video on my new page kzbin.info/www/bejne/r6TIc5Kbe72cbsUsi=UBsKdSmc-GRlmjM4

[@marjorienatalia9758]

I am from Chile, I have 10 months of TSW. I really appreciate this interview because there are not many doctors who take us seriously. We feel abandoned by medicine.

[@Hadz97_]

Hi! How are you doing at 10 months? I am on month 4 now and I’m really struggling

[@marjorienatalia9758]

@@Hadz97_ Hi. It has been a non-linear progress. Good days and bad days. I'm still not healthy. I hope it gets better for you.

[@Hadz97_]

@@marjorienatalia9758 I hope you recover quickly :)

[@CharlesGahl]

I just finished curing my TSW after 8 years of suffering from it. Effectively, the premise is that all illness is a nutrient and vitamin deficiency over time. TSW is that plus more. Basically, the body's normal response has been damaged by long term (2 months or more) cortisone use. First, ween yourself off of cortisone slowly (a few months). Next, change your nutrition. Start eating a ketogenic diet, specifically a mostly meat and organ meat based diet (called carnivore). However, there is one more thing: you must take 25 or so vitamins and supplements to complete this program. Here's how I did it: * late morning: drink a mix of 1 tablespoon of apple cider vinegar in a glass of water to which you add a tablespoon of nutrional yeast. I also take my 25 vitamins and supplements with that first drink. * eating: 2 meals a day--mostly red meat and liver (or liver capsules if you can't handle liver) * topical: use a mixture of castor oil and coconut oil on your problem areas. You might also want to use a zinc oxide cream too sometimes. Stick with this program until it all clears up. Once you stop cortisone, things will still look like crap for a while making you wonder if you made a mistake in stopping but just stick with it, because it will go away! Give this 2 years to complete your healing. To understand the ketogenic diet and carnivore diet, please study YT channels "Dr. Eric Berg" and "Dr. Ken Berry." So no junk food,alcohol, sugar, carbohydrates, starches. No pop etc. You have the advantage of not having to do the trial-and-error like I did. I just gave you the program to cure your TSW. Once you heal, pass it on! Here are the vitamins and supplements you will need to take daily: Potassium chloride, Sodium chloride, magnesium, Lglutamine, boron, colostrum, Vitamin C, collagen supplement, B, B6 ,B12, help biotin K2 zinc selenium. Calcium, chromium, copper, nutritional yeast, apple cider vinegar, co enzyme Q10, Vitamin A vitamin D (20000 IU), vitamin E, omega 369

[@thefirstcut]

dr rapaport is such a great tsw ambassador. a gentle man

[@tracidavis2278]

Thank you for the work you are both doing to help people suffering from this incredibly traumatic condition. Great discussion to listen to! The suffering is so intense, both physical and mental. It is completely heartbreaking. Preventable condition, but only if the medical community recognizes the risk of using topical steroids. Patients suffering from TSW need HELP from doctors, not gaslighting. Clinical research, data collection, information sharing, collaboration in the medical community, exploring non-steroid treatment options, mental health support as part of the TSW recovery process ... these things any many other things need to happen.

[@adithyakosgi222]

Why would they prevent it? The more steroids they sell, the more money made in the industry, and more recurring patients with more aggressive ailments. A sick patient is a profitable patient. I am currently exactly one such profitable patient.

[@drdustinportela]

@@adithyakosgi222 I definitely understand the cynicism when you have had this kind of experience. However, doctors don't think this way, but the medical system has some misaligned priorities. We don't get paid for writing any prescription, let alone generic topical steroids. It's frustrating when the system isn't providing the help you need however.

[@VickyG442]

Thank you so very much for being willing to learn. A teacher who is too arrogant to be taught is a tragic thing. Thank you!!!!

[@juliamcg7377]

Doctor Rapaport, such a hero. I found him about 11 years ago and embarked on the TSW journey that would last 4 years. But he was right and I came out the other end. This man deserves an Nobel prize for his conviction on this topic.

[@nhtathinfbntb2746]

I have seen 5 physicians including 2 dermatologists here in Canada. None of them recognize TSW. They think it is eczema even after I explain to them in depth that I have healed tremendously after stopping all steroid creams. Each physician I saw would say the exact same thing "if it gets worse or comes back we can always look at steroid alternatives like biologics and protopic etc". I am 95% healed 19 months into my withdrawal. I sincerely do not understand how a person that is intelligent enough to become a physician can lack such prudence, awareness in their own profession, and compassion...of course not every physician is like this but the 4/5 I saw are. more docs need to be like you Dr. Portela. Thanks for making this. Only doctors like you can help shift the narrative. Rapaport has been (and will continue to be) a one man army for too many years.

[@adithyakosgi222]

"I sincerely do not understand how a person that is intelligent enough to become a physician can lack such prudence, awareness in their own profession, and compassion" -> It's all for the profits.

[@worer850]

❤I live in Canada also. Identical results. 😅 doctor are total jokes. Except Marvin of course.

[@Lauren-se5bu]

Same I paid a decent amount of money to see a private dermatologist and he prescribed me protopic and didn't think I had TSW. My skin was actually in a relatively good state on the day when I had my appointment with him and he wouldn't even look at the photos I took when it was really bad. Needless to say I threw out that prescription, gave him a negative (and honest) review and now a year and a bit later my skin is clear.

[@drdustinportela]

What did you find the most helpful in your journey?

[@nhtathinfbntb2746]

@@drdustinportela 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. 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 is most cases. How do you tell someone that?

[@alatsaf]

Thank you for your interview with Dr. Rapaport. I am one of those who suffer from TSW. I live in France and nobody in the medical world want to recognize it. I am kept prescribed topical steroid and have been told that there is no such a TSW and not to believe those in the FB group etc. I like many here in France are feeling left alone and have been very frustrated. Please do put a translation in French in this video so that the TSW sufferers in France who do not speak English can benefit from this very valuable video and they might want to share to their dermatologists. Thank you

[@JoyfulinHope]

How are you doing, Georgina?

[@wendyesthermoranortega3195]

C'est pareil en Suisse...je suis toujours recommandé d'utiliser cortisone...

[@jackirogers2697]

Thanks for raising this topic and generating awareness. My husband at 6.5 months TSW is at such a debilitating state. The impact to our young family is so so much beyond his individual suffering. It's terrible to see him go through this process due to the mismanagement of his condition by "specialists". I look forward to the day that this condition is a matter of the past and there are no more unrecognised and ignored victims.

[@drdustinportela]

We definitely need wider recognition so it can be studied and identify the best treatments.

[@rhythmandgrooves869]

I’ll never forget the first doctor after 10 years of eczema and 2 years of TSW acknowledge my TSW for the first time. I got out of the office and cried my eyes out. He truly advocated for me and I haven’t touched a steroid cream since.

[@laurablanco7363]

How are you doing?

[@allynolan1909]

Thankyou for taking your time to do this. We need medical professionals to take this seriously. Im currently going through Tsw and elidel has suppressed my symptoms for 8 months. Im now cold turkey and going through the motions. This is not rare, my sister is also going through this.

[@susan6351]

God Bless this doctor. I am in tears just listening - I wish all doctors are this compassionate and really care for their patients. I would travel across the world to have him as my doctor.

[@topicalroidrage]

Thank you so much for talking about this and doing this interview. We need more doctors like you in the community.

[@drdustinportela]

username appropriate

[@lissetlopez835]

Thank you for this interview and for the information. My daughter is currently going thru this and her lifelong doctors have been deeply disappointing. The online community has been our only resource.

[@blakeemeny2960]

It's hard to be patient when you're covered in a living hell.

[@susanbacchi6265]

I wish you were in NY! I was just dismissed by a dermatologist for refusing to go on Dupixent. This is after I allowed him to do a skin biopsy for T-cell lymphoma, which of course, I don’t have. I have eczema and have been prescribed topical steroids for 50 years. They stopped working, and through research, came across topical steroid resistance. Thank you for acknowledging and supporting those of us going through this.

[@joeysipos]

I really appreciate you taking the time to recognize TSW! Most doctors I talk to are ignorant of it and refuse to recognize it. This gives me hope that the medical system can become aware of the horrors of overdoing topical steroids.

[@littlehami7278]

thank you so much for interviewing Dr Rap and your kind ear and understanding! TSW is very very real i am 8yrs in withdrawal and still suffering since it got slapped on me age 2-15:(

[@josiah_simpson]

Great interview! And it was interesting to hear about Lymphoma. In 2020 I had 2 lymph nodes removed and sent off to Mayo Clinic to see if I had Lymphoma. After a couple months of surgeries and Dr. meetings, the doc told me I have an extremely over-reactive immune system.

[@rosequintieri9393]

Thank you Now I know what’s bothering my skin

[@asuranrocks]

After stopping all steroids i never felt that HEAT and burning again

[@zoewalker3192]

Thank you for covering this very important topic. We went through this with my baby girl at 2 years old

[@janelleharris8470]

I disagree about NMT. I was a patient of Dr Rapaport and I spent a whole lot of money on telemedicine with him and while appreciate him bringing this to the forefront NMT is what pushed me into the healing realm. 7 months after starting NMT I am 98% clear 💜

[@asuranrocks]

Yes i feel that his method works too but NMT works FASTER

[@lyw7645]

My 11 years old son is using NMT now. Currently he is under the tsunami of the syndrome, repeatedly scratching, ooze, bleed, dried, scab….but my friend’s son got healed by NMT last year, he took about 8-9 months. I believe in his successful experience and will get hold on to that. Before I started NMT. I tried many types of moisturising for more than three months but finally feel that he still stuck in the inflammation stage and some complications showed up as well. So I started the NMT.

[@TobiasLA]

Fantastic Interview, extremely good questions, we must help these people

[@John-q4w]

This affection should be called what it really is, (Toxic Steroid Withdraw. )

[@DOTS65DOTS65]

17 months TSW here. Still fighting the fight

[@thayavijay4605]

How are u now I'm just two weeks into this gosh I'm so scared

[@DOTS65DOTS65]

@@thayavijay4605 now at 22 months. Still fighting. 3 to 5 years to 100% recovery

[@Paul-qq7mh]

@@thayavijay4605 yep its horrific!

[@drdustinportela]

How are you doing now?

[@DOTS65DOTS65]

I’m on cyclosporine I feel great now because of the medicine, but will have to get off at some point and see where I’m at. Dr. Rappaport says 3 to 5 years for most people to recover.

[@Johnnymahon218]

It's so frustrating when the doctors don't listen. I've been to 3 GPS (one at AnE) and two private dermatologists and paid them loads of money and they all prescribed steroids. Told the last two doctors there that steroids don't work and are making it worst and they completely ignored what I said. I had to argue with the stupid student doctor and the gp there on call at AnE about this because they were dismissing what I was saying. The student doctor said I needed to use stronger steroid and printed me info about discoid eczema. Really good doctors are the ones that listen and help. The ones I've been to are idiots that just brushed me off.

[@SoCalRegisteredNurse]

Most medications, if not all, whether it’s topical or oral should be tapered or titrated unless you have a very bad reaction and can’t take it. Because the body gets used to having it. Even BP meds, there’s that feedback loop system we have

[@patm01]

Excellent video! Great questions and responses!

[@leticiamedina9873]

No entiendo x q nadie hace nada tenemos q alzar la voz las personas q padecemos esto😢 necesitamos ayuda 😢😢😢😢😢😢

[@letskeepitmoving]

So if someone is suffering from a severe flare and burning and stinging under both feet don’t take anything?

[@MyAnchor619]

Question - Spongiotic Dermatitis shows up on biopsy. Can this be due to bad reaction to the steroid? I was given Prednisone (1 injection + 2 back-to-back 40 mg Pred taper) followed by a Kenalog shot all within 6 weeks. I blew up! Dermatologist refused to make the correlation b/t steroid and the reaction. I went to a different derm where biopsy to done and showed Spongiotic Dermatitis and drug eruption. I was given topical Hydrocortisone which continued the reaction symptoms. Currently doing TSW. So, did the Spongiotic diagnosis due to the TSW or just showing Atopic Derm.?

[@rer1972]

Does anyone know a doctor in Texas who follows the same protocols for red skin syndrome/TSW as Dr. Rapaport?

[@Lauren-se5bu]

I've used steroid creams most of my life. When I found out about TSW I stopped using them cold turkey, and yes it was absolute hell for a while, but I don't really have eczema anymore.

[@flyingpiggo101]

just curious, how did it take for your TSW to reduce?

[@Lauren-se5bu]

@@flyingpiggo101 it was extremely bad for a few months. I still had fairly bad skin for about a year but I've noticed that my skin in the last few months has been pretty clear. Even really bad patches that I had for ages have cleared up. Oh also coal tar and salicylic acid ointment helped control it so well. I can't say enough good things about it. Only the Clotosc brand though, as I tried another brand and it was useless.

[@almaarzate9184]

Really? You’ll talk to my doctor?? How do I do that? Please. Thank you.

[@sharifabhaiyat8996]

My adult son started with Discoid eczema at 23 and has had steroids for 3 years can he be addicted to steroids

[@iramnoreen2213]

Yes, there are some people that use it for 2 weeks and get addicted, if his eczema is spreading or his flares keep getting worse after stopping steroid use he could be addicted. That stuff is poison I wouldn't use it unless I was dying and I'm 2 years TSW

[@worer850]

Yes

[@cass1478]

This is the first I’ve heard of NMT and it sounds horrifying! Maybe I’m addicted to moisturizer but I cannot imagine not using it.

[@drdustinportela]

I don't really like that approach of NMT personally, but some people feel it was helpful

[@mares3841]

Thanks

[@manashine4828]

Can I apply crisaborole during the withdrawal?

[@drdustinportela]

I think it could be worth a try. It is steroid free.

[@jeanhenly710]

Hi have u prescribed l histidine

[@littlehami7278]

NMT isn't done because of the oil glands. We do it hoping to encourage our bodies to produce more cortisol quicker via dehydration, lessening burden upon immune system and to stop ooze and swelling with excess water stored in lymph and skin. The drier skin, quicker falls off and isn't so red and angry. I know 2 people who find it has helped but more research needs to be done.

[@danny2971]

Yes it is real. I'm at 50 days no use topical steroids. I am a mess. Shoulders to feet. Rash, oozing, flaking, red swollen skin. I don't want to live anymore.

[@MatthewBakke]

Hey, hope you’re doing great.

[@geniebobeanie]

are you alive??

[@danny2971]

@@geniebobeanie yeah. Alive

[@marthar6491]

P

[@rodlittle1488]

Thanks for the video, dr rap has done a lot for recognition of this disease. I do have one point I would like to caution you and others on though. Dr Rapaport is in error when talking about the diagnosis of sezary syndrome. I was a telemedicine patient of dr Rapaport and he and I both believed at the time that I had tsw, but I do in fact have sezary syndrome. The flow cytometry test is not a new novel test, but is a test that has been around since the early 2000 and is now considered the gold standard for diagnosing sezary. The tests looks for abnormal protein markers such as cd30 or cd4+ with cd26- before this the standard test was to do a blood smear and count the sezary cells that have an abnormal cerebraform shape. This is not used to detect a few aberrant cells, but to find enough of these cells to be significant. In my instance I had count of cd4+ cd26- that made up 92% of my lymphocytes with an absolute count of 15500 in my sample. Since standard lymphocyte distribution is Around 10% of that it is not a few aberrant cells. Every major cancer center has used this test for years. I think it is important to have this test known and used especially in those treating tsw patients as cyclosporine as a therapy can cause rapid disease progression in sezary. Again the literature documents this and I know from personal experience.

[@marvinrapaport228]

Mr Little- You must realize that diagnoses do not change, only the therapies do and patients are led astray. All Sezary patients in the past and they were very few in number- very few- all met their demise quickly - a severe and very rare lymphomas of the skin . I treat patients, not lab tests. All of the RSS patients have problems for years - very difficult to understand how a few or more cells in a new test equals lymphoma and you are functioning well as opposed to all the other patients in the past . Must be careful ,that one patient, you , represent a whole host of a new diagnosis to worry about- not appropriate. I have not seen a case in 40 years . I do not treat lab tests .

[@rodlittle1488]

@@marvinrapaport228 Thanks so much for the reply I really do appreciate it. I agree that diagnoses do not change, and that therapies do. I would also add that diagnostic tests change as well. Sezary in the past and in the present exceedingly rare with a slightly less then 1 in 2 million in the active pollution and only abut 300 cases a year diagnosed(in US), but it does exist. I would also say that it is a blood cancer that effects the skin and not a lymphoma of the skin. I would also agree that patients are treated after proper work ups that do include lab tests. I am sure that you have done many a skin biopsy and cbc and differential for example during your career. I also suspect that had you had a cbc and diff that came back with a white count of 29000 but neutrophils in the normal range you would have thought something was not right. I would also agree that sezary is very aggressive and both past and present life expectancy are not great with a 5 year survival rate of around 24%. I am also in no way suggesting that thousands of RSS patients have lymphoma, but it needs to be recognized that erythroderma can be caused by things other then RSS. My main issues is discounting the standard diagnostic test that is used commonly for many different blood cancers. As I said above, the flow cytometry test is not new, it was invented in 1965 and has been a standard diagnostic tool for blood cancers including sezary for several decades. I don't pretend to represent a whole host of diagnosis t worry about, but there does need to be awareness. By definition in order to have sezary there has to be blood involvement so a flow or a smear with physical count is required to diagnose it. The only reason I am alive today to write this is because I got the proper diagnosis and treatment has put me in remission. Sezary has a poor prognosis, but there are several treatments that can work well. For me it was the Hdac inhibitor Romidepsin that has taken my absolute counts from north of 15,000 to 0 with the first dose cutting the my counts in half in less then a week. Although that is doing very well, most Sezary treatments fail eventually and I may be seeing signs of that happening. I am seen by a team of doctors that until her recent retirement was headed by Dr Duvic who is considered by most to be the worlds foremost expert on the disease. I am sorry for the rant, by I have become passionate about this disease since diagnosis and like most having the diagnosis missed for several years because of the rarity of the disease. I see this as very similar to the many people suffering from RSS and being dismissed by many doctors which is why I appreciate all that you have done for the RSS community. Thanks Rod

[@tpb1006]

how do you explain facial hair loss in patches.