Does Cyclosporine Give You Relief From The Suffering of Topical Steroid Withdrawal? Dr. Rapaport

[@marshallross3373]

So glad to see Dr. Rapaport is still treating and commenting on TSW. I saw him at his office back in 2014--I'd already been off steroids for a year (having been made aware of his research back in 2013). He confirmed my TSA/TSW diagnosis, and was very encouraging. I've rewatched his KZbin videos many times, particularly when I was going through the worst of TSW, and it made a huge difference in providing me my confidence to hold on and continue avoiding the steroids. It took 3-4 years for the worst of TSW to abate and another 2-3 for the final patches to completely fade. My skin is normal now, and better than ever. I'd still be on steroids were it not for Dr. R. and his groundbreaking insight into this problem. Every other dermatologist that I went to had either never heard of TSW, or dismissed my concerns of it altogether, barring one young dermatologist I saw a few years ago for a separate reason. He, at least, was interested in what I was describing, but admitted that the dermatology group he was part of had never discussed TSW, and had no policy regarding it. In fact, another dermatologist I saw earlier at this same group walked around with a cheat sheet list of steroids that she referred to when discussing treatment options. She wanted to prescribe steroids for me, even after I told her I was going through TSW!!!?. So, thankfully, Dr. Rapaport is still advocating, and sharing his knowledge. I tell people that I run into about TSW from time to time, particularly people with skin issues, and they are surprised. One young mother was discussing online about her kid's eczema and she found a steroid type cocktail treatment for it that she was elated about. After all, it was working for her kid. I attempted to warn her about my experience with steroids, and she really didn't want to hear about it. TSW is a tough sell because steroids are so effective...but they are insidious in how they propagate the very problem they are used to treat. My thanks to Dr. Rapaport and his team. In many ways, you guys saved my life.

[@marvinrapaport228]

so kind of you to comment positively

[@Paul-qq7mh]

Your comment is very reshoring.

[@breannamedek9186]

Did you go on cyclo?

[@marshallross3373]

@@breannamedek9186 No. Others do, but I never did. It might help reduce the agony, but it just depends on how you react to it. I just bit the bullet for a few years. From time to time, I did use a coal tar cream; there's some concerns about cancer with such products, though. Compression helps, with 100% cotton fabric or cotton rolls. Most moisturizers made matters worse.

[@susanaangelicalizama5485]

After one miserable year in TSW I finally started cyclosporine yesterday. I am feeling so hopeful and will definitely advocate for myself until I get where I used to be before TSW!

[@andylambchop2788]

how are u now?

[@uzmakhan1852]

I started mine 1 week ago. Feel so much week.

[@alimustafa3181]

Absolutely commend this doctors lifelong work. he is a gem and a beacon of hope for so many of us

[@marvinrapaport228]

very kind comment

[@littlehami7278]

Brilliant Dr thank you and to the recording guy for releasing this info

[@isabelle-nv7yw]

Great info again. Dr Rapaport if I had not read your articles I would still be on steroids as all derms said to continue while I knew this was not eczema…7 months of tsw…this is so tough…only used hydrocortisone and desonide on eyelids and then elsewhere when rash spread…for about 2 years. Now Red skin and flares on face and torso..very painful…a lot of swelling on face and burning…also thermoregulation issues and fatigue…would you recommend cyclosporine in this case or only for cases where potent steroids used and red skin from head to toe? thankyou!

[@marvinrapaport228]

every patient is different - you need to be evaluated- physically and psychologically - an in depth understanding of you dictates the therapy- I do not ""just try medications "

[@Shannonmusic]

Dr Rapaport, can you please tell us about the ideal dosage of cyclosporine? And how we can taper off if you want to quit after some years of usage? Thank you ❤

[@marvinrapaport228]

Every patient is different, every situation needs a new assessment. The psychological underpinnings of each patient need to be explored unless the medication can fail- It is not like Rxing aspirin

[@nicolesimms4941]

Respectfully, I was stuck in a steroid dependancy cycle for 15yrs over 20 yrs ago. Didnt realise it at the time. Drs just thought it was allergies. Dr put me on imuran - I fell pregnant so abruptly stopped and burning sk8n didnt come back! Drs then said predniosone dependancy cycle. So u can stop sooner. After that I had a few itchy spots come up on a finger that drs said was pompolyx eczema and to use topical steroids. Ive just gone through 2 yrs tsw... i now believe those itchy spots were comunity acquired staph and got slowly worse coz of damage from 20 yrs of ts. Its been antibiotics and then fungal cream after getting over the steroid damage that was biggest help over all the alternatives.

[@leticiamedina9873]

Mi hija toma ciclosporina y si la a ayudado...cuanto tiempo se debe tomar este medicamento ???

[@_jessie_jessieee_]

Please do a video on Methatorexate!!! Highly requested

[@_jessie_jessieee_]

-For tsw

[@marvinrapaport228]

I just commented about this medication - go back to past Conversations - anmother person inquired ( and I was "catching up " )

[@marvinrapaport228]

if more info needed ,let know

[@AjeebDastaan2015]

Is Tofazak XR 11 mg(Tofacitinib) oral dose good for managing the side effects i.e itching & burning sensation of dry/photo sensitive skin all over the body due to steroid misuse(systemic effect) for a normal person? Or the skin should improve with time by conventional moisturizers & sunscreen?

[@marvinrapaport228]

The cessation of the steroids leads to cure . The Tofazak is probably useless . The symptoms vanish within days when taking cyclosporin so sad that ther drug companies arte trying to reap a fortune when all the studies proved negative and almost all studies had the patients continue in steroid usage - balderdash

[@Shannonmusic]

And I heard about 2 different versions of cyclosporine: an old and newer version..? Which one to take?

[@marvinrapaport228]

It is non-modified and modified. Both types are effective , BUT problems may occur with dosage if there is aswitch ( insurance ?? pharmacy supply ??? etc- must stay with the same type

[@debz555]

I’m on ciclosporine been using it 5 weeks & it’s helped me so much but I’ve recently had eye problems do you know if it’s related? I did 7 months of TSW bed bound couldn’t walk lost all my hair aswell as insomnia shaking skin falling off x

[@marianelizondo3592]

Hello!! How are you doing now with cyclosporine?

[@michaelangelo3305]

Hello what sort of eye problems?

[@debz555]

@@michaelangelo3305 …Hi I have been having blurred vision in my right eye they think my cornea has a graze on …I do have a pic but can’t put it in here ….i have just heard that they have recalled epimax cream due to chemicals & causing eye problems …I used that during TSW x

[@michaelangelo3305]

@@debz555 love your yourtube chakra pic by the way

[@Procrastimaker]

How did your treatment go? Did the eye problem go away?

[@worer850]

Can u recommend any dermatologist in the Toronto area that you know of that won't offer me more steriods for my tsw? It's just deflating going to a dermatologist, explaining your situation, and it goes in 1 ear and out the other. They offer more riods. Absolutely deflating.. it's obvious it's not excema.

[@marvinrapaport228]

I do not know of any positive thinking colleague - I can help with telemedicine if interested

[@worer850]

@marvinrapaport228 I would love that. But can u write scripts for people outside the US? I have my blood work being done this weekend.

[@Arsalan8000]

Can you please touch on cold atmospheric plasma treatment for tsw ? This is a specific treatment to speed up tsw healing

[@marvinrapaport228]

without any more information, it would be totally illogical, a money maker , false hopes involved and NO data available- called garbage- must prove the positivity -

[@fakkeldrager1]

@@marvinrapaport228 can find many good reviews for CAP treatment now. Many people go to a clinic in Bangkok and have amazing results

[@charmaineermine1217]

I would like to try this out. I am two years tsw. How would I be able to connect with you Dr Rapaport?

[@jerredclarke7887]

Can TSW reflect a false positive over active immune response through blood work? My ANA autoimmune response has been positive both times I’ve done blood work in the past 6 months. Just testing to see if I should seek a specialist for something deeper than TSW?

[@marvinrapaport228]

depends on the titer- many many people have low titers and if you go to an MD who is poorly trained and treats lab tests and not patients , you will be in severe jeopardy and down a black hole

[@goodstuff88888]

Dr Rapaport, cyclsporin didn't work very well for me and gave me folliculitis, I've tried all the immunosuppressive drugs, Imuran worked the best for me. I did a drug trial for a Jac inhibitor called rinvoq, worked for 2 years and has just stopped working. I tried stopping typical steroids and ended up in hospital five years ago, the specialists wouldn't listen so back to steroids I went. I have to wait 6 weeks my specialist appointment and will ask for Imuran for my steroid free journey. Wish I'd stuck to my guns 5 years ago as I have to start form scratch again, it's been 3 weeks of hell so far.

[@marvinrapaport228]

100 % of the 800 patients that I Rxed with cyclosporin were cured or about 25 are still in therapy. You have to see an MD who knows what they are doing -right dose, right monitoring etc. You need better medical care- none of the new meds ,nor Dupixent are of any value - no one has been cured - no published papers at all . The original studies were very poor and theat is why the TV ads say nothing ,but show teensgers playing soccer - you need better care

[@abz2899]

Can you talk about the nerve pain which apparently can take years to heal? I've had it for 2 years and it's better but still present. Some say it healed for them after a few months.

[@marvinrapaport228]

this should not happen - need an appropriate evaluation by a competent MD

[@abz2899]

@@marvinrapaport228 I've read and heard that nerves are slow healing tissues though.

[@FIFAhellyes]

Is atopic eczema ever actually real or is it all steroid addicted skin in your opinion Dr Rapaport?

[@jadenpatel3332]

from his studies he says severe eczema didn’t even exist before steroids. it’s all induced from when first starting taking these heinous drugs

[@marvinrapaport228]

atopic dermatitis classically burns out by age 5-9 years of age . All of the prolonged RSS patients are steroid addicted ,not eczema any more. About 5-10 % of these chronic steroid users have psoriasis, seb. dermatitis, contact dermatitis, or Winter itch ( a few other more rare entities also ) , and did not have atopic derm as the rreason for the chric usage -BUT THEY LOOK AND HAVE SYMPTOMS AND SIGNS EXACTLY THE ATOPISC, ONCE THEY ARE ADDICTED - THEREFORE THERE IS NO SUCH THING AS "BAD ECZEMA "

[@kyusunkim2629]

Dr rappaport. Do you have any derm referrals based in dallas tx that follows your same.philosophy

[@marvinrapaport228]

telemedicine is available with me

[@effjr3lz]

Is it for 9 year old daughter shall I start I m scared

[@VickyG442]

Of the 800 plus you have treated w cyclosporine how many have had to come off for side effects like the excessive growth of gums or kidney damage? We really want to make an informed decision before taking.

[@marvinrapaport228]

NONE-I saw only one patient who had some gum issues- lowered the dose and problem was minimal and livable . BP and kidneys were monitored - a few rare "blips " - lowered the dosage for a week or so and resumed .NO ONE HAD TO STOP THE MEDICATION - ALL OF THE 800 OR MORE PATIENTS WERE CURED- EXCEPT FOR THE 20-30 STILL IN TREATMENT

[@marvinrapaport228]

If you read the wrong items, you get frightened- " can only use med for a year ", too dangerous " , "will kill your kidneys " - doctors are often pessimistic about many things , unless it is something they are comfortable with

[@VickyG442]

​@marvin rapaport managed not cured is the newest vid. I get hung up on the vids that say cured. It's my brain goblin.

[@michellepark9275]

I feel like cyclosporine might be a good fit for me. But, I’m afraid the dermatologist won’t know how to correctly prescribe it/how to wean off it if they even agreed to use it. The dermatologists here don’t recognize TSW.

[@worer850]

Same .I'm in Canada. I just came back from a dermatologist with tsw on hands neck forams.. she offered me more riods..wtf is going on with the medical.system.

[@patm01]

Since doctors, the AAD, the FDA, and pharma don't accept TSW -- and if the new drugs are not helping TSW, it may be far-fetched but "if it were me", I would present this to the heads of the insurance companies who are paying most of the $40-80K for these ineffective drugs (although probably much less). It's doubtful that most patients can afford those prices after their free coupon expires.

[@marvinrapaport228]

Very appropriate statement . And here I confess to a little conspiracy /paranoia thinking . There is a hookup between drug companies and dermatology journal advertising and the FDA- I will discuss in the next one or two Conversations -most disturbing

[@patm01]

@@marvinrapaport228 It's not a conspiracy or paranoia. It's a triad. Someone is paying and it's the one with the deepest pockets.