My experience with both physicians and patients and their often misinterpretation of scientific data leads me to comment and suggest that often relief of symptoms and cure are pushed away inappropriately. Patients gather information from the internet, ITSAN, other support groups and blogs that suggest avoidance of medication will solve the problem. Also personal and myopic experiences will again win the day. I am concerned that false hope is offered at times and ‘bad experiences’ are magnified.
The doctor sees all the weakness of mankind, the lawyer all the wickedness, the theologian all the stupidity.
Schopenhauer- ADDICTION TO MOISTURIZERS – Comments regarding addiction and withdrawal are frequently made on the Internet. The skin of RSS patients is often dry, especially after the shedding of dead skin following a red flare. Moisturizers make the skin less scaly, but they are an imperfect remedy. The need for moisturization increases but that does not support the idea of addiction or withdrawal. The chemicals in moisturizers have no ability to addict. These products will be discussed in a future blog.
- FOOD CAUSES ALLERGIES AND MAKES RSS WORSE – There is no data despite RAST [a blood test used to determine allergens], scratch tests and pin prick tests that foods should be avoided. Almost all patients despite having food and environmental allergies go on to cure with no further skin problems. The atopic dermatitis patient has very sensitive skin and these irritating to the skin test methods cause a non-specific red response supporting a misconception of “red” meaning allergy. Patients can exhibit 30-40 positives and still eat these foods with no adverse reactions.
- ENVIRONMENTAL EXPOSURES CAUSE WORSENING OF RSS SYMPTOMS – There is no evidence that dust, dust mites, sun, pollen or animal exposures cause or worsen the problem, nor do any of these exposures inhibit withdrawal from steroids. The “positive” scratch tests are false positives.
- THE ITCH AND BURN SYMPTOMS ARE PSYCHOLOGICAL – The objective observation of dilated blood vessels in the skin are evidence that a chemical is causing the continual vasodilation. This chemical, nitric oxide, will be discussed on a later blog. No neurosis or cerebral mechanisms are operating here.
- NEW PATIENTS SHOULD JUST TOUGH IT OUT – It has been suggested that stopping the steroids, listening to supportive former patients, and just “muddling through” the withdrawal symptoms is the best that can be done. This is misleading and destructive in my opinion. Steroid withdrawal is a disease process and the physician can be called upon to aid with the burning, pain, anxiety, sleeplessness, itching, edema, oozing and infection of the skin. External creams and baths are available and are helpful but the physician can offer prescription treatments that can ease the burden of suffering.
- EVERY WET AREA IS A SIGN OF INFECTIONS – Needless antibiotics are being prescribed. The RSS patient’s immune system is invariably intact and functioning well. This natural surveillance system is capable of stopping most minor infections so it is unnecessary to treat every cut, scratch, or folliculitis (hair follicle infection).
Dr. Dr. Rapaport,
Thank you for starting this site. Would you please address in a future blog your thoughts on Dr. Aron’s philosophy that the red skin from ‘”supposed red skin syndrome is just staph complicating the eczema.”‘ He, like much of the medical community, does not believe in TSA/TSW.
His treatment of eczema in children consists of a child-specific compound composed of a base cream, antibiotic, and TS. This is applied 5-6 x per day and has a tapering schedule. It seems to be effective for many children, but neither he nor the parents advocating his method educate the parents of the potential side effects of topical steroid use. The parents actually tout the method as completely safe and suppress any talk of TS side effects in their forums.
My son is 21 months TSW, which we managed with your guidelines. His experience led me to write the 2 manuscripts on the website above. I am not a physician but a rehab hospital-based physical therapist and would like to get TSW/RSS in children diagnosed with eczema recognized as a real entity as well.
Thank you again,
Rosemarie Curley, MSPT
http://Www.beyondtheitch.wordpress.com
http://Www.tswresearchgroup.wordpress.com
I have seen Dr. Aron’s website and video. Unless there is some hidden message, it is the same therapy of steroids, wraps and occasional antibiotics that has been used for 50 years in various fashions. It seems to me he is treating pediatric eczema patients before they are addicted or in the early stages of addiction. These appear to me not to be total red skin patients. I am not opposed to moderate usage of topical steroids in the early stages. It’s when the continual “running after the rash” occurs that we see addiction and the red skin syndrome. It must be understood that not all users of steroids get addicted. It needs a well trained logical physician to manage the amounts and time and usage. The face and groin areas should be avoided. Dr Aron must define all the patients that he has “cured” and tell us of long term follow up in all. I have seen patients treated in this manner and their total body red flares have been horrific weeks to a few months later.
My 3000 patients have all been followed by me for years after cure. Please find my papers that have been published in the most august Dermatological Journals. I would be interested in seeing Dr Aron’s publications.
Dear. Dr. Rapaport,
Would you please discuss TSW in children with eczema on a future blog? Like adults with RSS, many parents of children with eczema are getting the same responses from pediatrician and dermatologists: diagnosis-worsening eczema; treatment- more topical steroids.
Thank you,
Rosemarie Curley
Dr. Rapaport, what is your theory on the delayed rebound from steroid withdrawal? For example, some people experience the intense withdrawal symptoms many months after quitting steroids while most people experience them as soon as the first three months.
A future blog will cover that subject. A new entry on the website this week will list 10 future subjects that I am now composing.
Thank you for making this website doctor. I will be following closely
Very grateful for this website! Will check it out regularly! Thank you Dr. For giving us the opportunity to heal from this terrible condition! -Australia
Hello Dr. Rapaport,
I am so pleased you have developed this website. Thank you. I am three years into withdrawal and feel like most of my trouble now is a result of lichenification. I simply cannot stop scratching. What experience do you have with lichenification? Do you think it is possible to be in withdrawal for three years? I have just started a treatment of cyclosporine. Will I need to taper off this? Or can I stop abruptly. Thank you so much.
For a personal consultation please contact Marisela or Michelle. Their contact info is on my website. There will be a future blog on this subject.
Thank you Dr Rapaport for starting this blog. I find it fascinating. I note from the above that you refer to some papers you have had published in dermatological journals. Where would I find these please? I’d love to read them. I’m in the UK.
Best wishes
Jenny
Please contact Marisela or Michelle. Their info is on the website and they will give you the link to my papers. My papers can also be found on the Internet when you search Dr Marvin Rapaport.
Hello Dr.Rapaport,
Firstly, Thank you so much for all the work you have done with this condition , and continue to do with this website.
Secondly, I have just written to michelle about arranging a consultation with yourself, because i believe my son has red skin as a result of TSW.
I have been to 4 dermatologists, and despite handing them your papers and explaining the condition, they still think its just bad atopic dermatitis.
So your diagnosis would put my mind at rest, and your advice for relief of his symptoms would be wonderful, because he suffers every hour of the day and night and his derm wont see him for another six months!!
Anyway, the question i have is regarding the nitric oxide (i’m hoping this will be one of the subjects you will cover in upcoming blogs)
Im just very confused about its role…because everywhere else I hear what a great molecule this is, and yet you mention it would be useful to find an antagonist to help alleviate symptoms.
So my question is:
1) is the NO assisting recovery (so therefore the excess amount is a good thing because its part of the healing process)… or is it an unnecessary occurrence which needs to be controlled? (or both, its like a double edge sword, it helps to heal, we just need to cut out the side effects)
The reason i ask, is because I’m curious if:
2) would increasing the NO, help “get it out of the system” more faster and efficiently, to speed up withdrawal.
My third question is double-barrelled…
In this video: (please see link) Dr. Richard weller talks about his experience with sunlight and how it effects the NO in the skin.. You have said before, sunlight works like a charm as therapy in the later stages of withdrawal.. but can be too troubling early on.
Also, I know you have said before that food isnt a factor with this condition, but I thought the body creates NO from certain foods more so than others, for example where L argenine is present.
Dr. Nathan Bryan talks briefly about this (see other link)
So my question is :
3) Are factors like premature sunlight exposure, and an inappropriate diet potentially an “environmental exposures” which can worsen the RSS symptoms? (Because these 2 factors can increase or decrease the levels/activity of NO which mediates the flares sufferers experience )
Please bare in mind, I’m not medically trained, which is why I’m so confused, and my question s show a lack of understanding.. I don’t fully understand the role of NO and its use and relevance to this condition, but would like to, as it plays such an important key role.
Thank you so much for taking the time to read this,
Thank you for all the understanding and support you have given to unknowing victims of RSS
I downloaded and listened repeatedly to all the teleconferences you did with Itsan, and your reassurance helped me make the decision to stop steroids, and have kept me going thru this horrible process.
Even if you cant provide detailed answers, A reply would be much appreciated,
Thank you sir.
Richard weller- https://www.youtube.com/watch?v=M1PQ_6NIqW8
Nathan bryan https://www.youtube.com/watch?v=ut-ncMLoVmU
Dear Sir:
Thank you for your well thought out comment. A future blog will discuss Nitric Oxide. 10 new blogs have been submitted for the site as of this date. I hope you will find them helpful. If further medical help is needed please Marisela through my office (info is on the website).
Best,
Marvin Rapaport MD
I have become super sensitive over years of use of ts and seems impossible to find any moisturiser to mend my fragile skin. I think I have tried almost every moisturiser ever made, I know this is a slight exaggeration but I’ve tried so many. I have used Cetraben and Epiderm cream for longest time but since doing tsw I’m about 15 weeks free of steroids even these creams seem to cause intense itching. I fee in desperate now as this stopping steroids I have become a semi invalid. Terrible edema in my legs swollen sore ankles. Pain in my legs when I sit, and when I walk. I have been put on a heart tablet as edema caused they said by heart failure. I have a dermatology appointment in two week’s time. I was like this 8 years ago but didn’t understand about rss. I was treated at the time with 6 weeks strong steroid followed by a reduced steroid for the last year. I fear the only thing I will be offered will be steroid cream.
First and foremost the edema is most probably from the steroids on the legs and elsewhere and not cardiac in nature. You must find physicians who understand the pathology of this problem so that you don’t get worse. 15 weeks is a short period of time in the withdrawal process. If you need further and in depth expert care please contact Marisela at my office. All of the info is available on the ‘Contact tab’.
Fantastic, thanks so much.
I am 15 months TSW, been on ciclosporine 300mg for most of that time, now weaning to 200mg and really struggling at the minute with facial edema along with sore, bumpy, oozy skin all over. It is comforting beyond belief to read your entries, it reassures me that I’m on the right path.
There aren’t enough words to thank you!
In reading your story it counters my experience with almost all the patients I have put on cyclosporin. The edema and ooze usually almost fully clear within days. There are two different types of cyclosporin. I think your physician needs to look into which pill was filled by the pharmacist and/or possibly the dose should be increased.
Thanks so much for your reply. I was not aware there were two types of ciclosporine. Could you possibly explain this further? My physician does not “believe” in TSW.
Thanks in advance, I appreciate that you are very busy and am very grateful for your support
A present and future blog discusses cyclosporin. If your physician is not able to care for you please see my Contact information.
Thank you, I did actually email one of the addresses to enquire about pricing of a telephone consultation but have not received a response yet.
As always, thanks for your response and support
Hello Dr Rapaport,
I used elocon 3-4 times (for 2-10days) for whole life (I’m 30) and 3 month ago my dr gave me betametasone which I was applying during 2 weeks. Now I have all TSW symptoms. Could i be addicted for such a short period of time? Did you have such patients?
Yes, absolutely you are addicted. Otherwise why would the dermatologist increase the strength – typical inappropriate prescribing. Please read all of the entries on my website thoroughly. If you need further help contact Marisela in my office. All the info is on the ‘contact page’ of the website.
What do you think about using protopic or elidel during TSW?
There will be a blog in the near future about this topic, but I do find it of little value.
I just wanted to thank you. I’m 3 years off now. I went cold turkey and lived in a bathtub, for the first year,pretty much other than being wrapped up in bed…. my skin is like nothing I have ever seen on myself. I’m 30 and this summer was my first, going to the beach like everyone else. heck I even wear dresses now. all the side effects.. wrinkles in the the skin that comes from the recovery are all gone. I’m finally me.! Thank you again for your work. not sure where I would be if I hadn’t found out about you! I owe you everything.
Thank you for the compliments. It is my pleasure to cure you and others.
Hi.
First, thank you for great scientific articles and a fantastic page about red skin syndrome.
I am studying Topical Steroid Addiction/Red Skin Syndrome and trying to convince Norwegian Dermatologists that I have Red Skin Syndrome. I was wondering if anyone has experience in taking tests that illustrate they have the illness.
Example:
I have seen self-testing kit for Nitric Oxide levels(only low, medium or high), but it is only saliva strip tests, not serum as described by Dr. Rapaport as he described that a median of Nitric Oxid Levels are 2,2 in addicted group compared to 1,5 in eczema group(reference to Red skin syndromes: corticosteroid addiction and withdrawal, 2006).
Thank you so much for you contribution.
My 2 yr old daughter is undergoing withdrawal and she has the stages of severe dryness/flakiness and then weeping in certain areas. National eczema website recomments baths no more than 20 mins . Will 30-60 mins of soaking her in water dry her skin out too much?
You must have appropriate medical care. You need help. I would be glad to assist. I do not agree with any of the NEA recommendations because RSS is different from eczema.
Dr Rapaport,
What would you say is the main difference between true eczema and red skin syndrome?
Thank you so much for all your research and information on RSS
There is a different biopsy, a different history, a different pattern in the skin and different symptoms.
Dear d-r Rapaport! I never had bad eczema. I had little rash Two years ago and the doctors made two injections of Betamethasone ( during one months) and Russian immunomodulators at the same time ( i think it was wrong therapy, it was any medical mistake) After that I have full body eczema. Then Some courses of topical steroids ( 99% on my body) again systemic steroids but it doesn’t help and after few days eczema come back. Is it possible to have RSS because of systemic strong steroids, steroid injections. Even if I didn’t use topical steroids for years before.? I have all the symptoms of RSS. One year without steroids at all. From time it is better on some places of my body. Have you ever saw the same situation. Maybe RSS can appear not only because of topical, but after systemic steroids too. Sometimes my situation seems to be unique. Thank you for your answer in advance)
If you need my personal help please use the contact information on the website.
Dr. Rapaport,
I do not suffer from eczema like so many RSS patients. Instead I was prescribed elocom for perioral dermatitis and unfortunately that was the start of my steroid journey. I have been diagnosed with rosacea in addition which has complicated matters and suffer from papules and pustules in addition to redness. I was prescribed Accutane and Elidel in November and instructed to wean off the steroid. I have been off the steroid for 6 weeks but I am suffering from RSS and recently have developed lichenification. I am concerned that the Elidel is not safe and may actually cause RSS. Would you please advise? I do not want to delay my recovery but clearly do not want to suffer unnecessarily.
You are being totally mismanaged and mistreated. None of the drugs given to you do anything but make matters worse. This problem can take a year to resolve. If you would like my personal medical attention please contact Marisela at my office:
mariselag@rapdermbh.com
Dr. Rapaport,
The dermatologist who scripted me for Niamcinalone (for body use) and 2.5% hydrocortisone cream (for facial use) which I only used for maybe ten days and then not as often as ordered due to adverse reactions. In the hospital, she prescribed two IV doses of prednisone at 125 mg and 60mg. I had prescriptions for prednisone and medrol but filled neither after having a bad reaction to the prednisone IVs. When I informed her I have RSS/TSW and that I had stopped using all steroids, including not taking prednisone, she stated “Red Skin Syndrome appears to be from topical steroids only and thus the medrol and prednisone would be ok.” I find this impossible to believe. Why would injested steroids be safe when all steroids are absorbed by the body? Can you clarify?
Getting IV steroids is like getting the atomic bomb. You will flare all over the body. If you need/desire my personal medical advice please contact Marisela in my office. mariselag@rapdermbh.com.
Dear Dr Rapaport, I have had Red Scrotum Syndrome for years now and the dermatologist keeps prescribing hydro cortisone/pramoxine cream on 2 weeks and off one week, plus he put me on gabapentin 600 mg/day, plus econazole nitrate everyday. My family physician game me all kinds of steroids before this. Nothing is helping me. Is there a cure or help for this. I’m really getting tired of all these creams and this is getting to be depressing. Tired of all the soreness and itching and sometimes embarrassing. Thanks.
You are pouring gasoline on the fire when you use the hydrocortisone every 2 weeks. Your doctors need much better training. If you need my personal medical consultation contact Megan in my office: megalr@rapdermbh.com. You must stop all steroids.