I am not an ITSAN affiliate, nor do I speak on their behalf. This is an account of my personal opinion of ITSAN, and of how this organization is run.
ITSAN, The International Topical Steroid Addiction Network, has helped myself and many others start a conversation about a very important subject. The group’s slogan, “Red Skin Syndrome Support,” expresses exactly what the group aspires: to give support.
Many outsiders feel that this group demonizes topical steroids. They are correct in their assumption that, yes, this group does advocate to try and find an alternative to using topical steroids. Where they are incorrect is how this group discusses topical steroids.
ITSAN stands against the prolonged use of topical steroids. The use of topical steroids, under a knowledgable doctor who does not over prescribe them for weeks to months to years at a time, is safe. Steroids, in general, are a wondrous drug that can help many lives.
They also wish you to be under the care of a doctor who gives exact instruction. Monitoring your use of a drug is just as important as prescribing it.”Use on affected area” is not clear. How much do I use? How often can I use it? What if the area is my entire body? And, when it comes to having multiple doctors (physician, dermatologist, immunologist, etc.), it’s important they each take into consideration what the others are prescribing.
Through the decades of study from Dr. Rapaport, as well as new research done by other doctor’s like Dr. Fukaya, our eyes have been opened to the facts about prolonged use of topical steroids. This miracle drug, a drug that has been overused for decades by doctors, is causing adverse effects in many patients.
Does ITSAN demonize steroids? No. What ITSAN has been giving to the community is a place to go for resources on the dangers of prolonged used of topical steroids. It shares the horror stories of what can happen (not what always will happen) to those who have been overprescribed steroids.
ITSAN also tries to deter first time users of topical steroids to seek a second medical opinion. Does this mean that ITSAN tells people to disregard their doctors? No. ITSAN is desperately trying to help future eczema suffers from becoming victims of Topical Steroid Addiction (TSA). Topical steroids, as a treatment, should not be the first therapy available. Doctors should be able to offer their patients other options besides jumping into the topical steroid pool.
There are an inappropriate amount of doctors who do not understand the very treatment they are giving. ITSAN is only trying to protect patients from these types of doctors. I know this because my former dermatologist is one of them.
I have had eczema since I was little. It was in the usual spots, and growing up it wasn’t an ordeal to manage. Yes, I used hydrocortisone for stubborn spots when needed, but never had my eczema be out of control.
At 22, I joined a cruise line as a performer. I had to live on board. Within a month, I had developed horrible red, itchy patches all over my body. My skin was a disaster. I had no idea what was going on, and after 2.5 months of it, I finally went to a dermatologist.
This dermatologist saw me and said she knew exactly what I needed and that she would fix me right up. My heart wept. I was in so much discomfort I nodded in thankfulness. Did she take a biopsy? No. Did she test my blood for infection? No. Did she do a skin swab? No.
But do you know what she did do? She prescribed me a topical steroid (Alcometasone Dipropionate), Protopic (an immunosuppressive ointment), an anti-fungal cream (Naftin), an anti-fungal oral (Lamasil), an antibiotic (Bactrim), and two types of antihistamines (Atarax and Xyzal).
Looking back, I should have freaked out. How can a doctor say she knows what is wrong with me if she gives me the entire medicine cabinet to take? And, of those medications, were those the correct ones? There are many types of fungal infections– was Lamasil the one for me? There are many strains of staph infection — was Bactrim what I needed to clear it? Did I need both an immunosupprive and a topical steroid?
Furthermore, my prescriptions were not fully explained. I had no idea that Protopic was an immunosuppressive. Not a clue. My doctor praised it for not being a steroid. However, she conveniently left out the ‘black box label’ that says prolonged used of this drug could cause cancer. She also downplayed the dangers these drugs had on my organs. I had to come in, once a month, for a blood test to check my kidney and liver functions. “Just precautions, and if they go up a little, we will take you off until they go back down again.” Mind you, these are the drugs I am not even sure I should have been taking since she never took a swab or blood culture.
I used these creams and pills, on and off, for 3.5 years. Each time I went off of them, my skin would look different to what it used to look like all those 22 years of life. I would have these white spots all over, eczema started to develop in my scalp, on my hands… I didn’t understand. But… I trusted my doctor since she was the expert.
My life drastically changed for the worse because of a trusted expert. Instead of healing me and helping my situation, she ended up giving me the worst gift: steroid- induced eczema.
I think back constantly to our first consult. What would have happened if I’d had a culture done, or my blood taken to see if I had an infection? I could have found out I had a simple fungal infection that took hold to my sensitive skin and could have eliminated it with the correct anti-fungal medication. I think the same about if I had a staph infection. I could have known what type it was and which correct medication to take for it.
So, when people state that ITSAN tells you not to listen to your doctor, that is not correct. What ITSAN advocates is to find a doctor who doesn’t just say, “Here, take all these meds because I said so,” and doesn’t give the appropriate attention to his/her patient. Our skin is the biggest organ and it should be treated with the utmost love. All ITSAN wants for its patients is the correct care. They want you to find a doctor who will take the right measures and make sure that the medication they are giving you is correct for your circumstance.
Is ITSAN run by medical doctors? No. Do they pretend to be? No. ITSAN continues to post and provide research and articles from doctors who are studying the adverse affects of the prolonged use of topical steroids. It is essentially a support group that continues to reach out to the medical community about this topic. They try to go to as many seminars as possible and speak to as many medical professionals as possible.
However, ITSAN sits between a rock and a hard place. There are still so many doctors out in the world that don’t wish to have a discussion about the potential adverse affects of the prolonged use of topical steroids on their patients. These doctors continue to see patients, day in and day out, and solely prescribe these topical steroids and immunosuppressants without going into any further research for their patients.
What this does is create a problem. There are many people suffering with TSA and have no medical support from doctors in their community. They are literally turned away from doctors since they won’t take the steroids.
What do they do? Who do they turn to for help when all their resources are against them and won’t help them find another way of dealing with their skin besides prescribing them stronger steroids, be it oral or topical (even shots)? — they seek help from others going through Topical Steroid Withdrawal.
Am I a medical professional? No, I am not. Do I pretend to be? No, certainly not. Have I been going through Topical Steroid Withdrawal for a year? Yes. Does that make me an expert on it? No. But, it does give me an insight.
If people ask me my opinion, I give it to them. I tell them what I have personally experienced and how I’ve dealt with my situation. That’s all I can offer. “What do you use for ooze?” “Well, I use zinc cream, mostly sudocram.” I literally have a whole Youtube video dedicated to this. Can I, or any other TSW sufferer, force people to try products? Absolutely not. I am not a mutant nor do I have super human powers to force people into a store to buy a certain product.
Most of this is trial and error for many of us. If you don’t have a medical professional who wants to help you, then you turn to the next best thing— ITSAN support group.
Also, if you are uneasy about something, be it ooze or swollen lymph nodes or certain spots on your skin that seem questionable, go seek medical attention. Ask for swabs or cultures or ultrasounds/mammograms. That is up to YOU. No person can stop you from doing that. Many of us sufferers can give you our personal advice, but the choice is up to you about your body. I have literally been to the ER (where they found a blood infection and I am just about to finish my antibiotics for it), had two breast ultrasounds for lymph nodes, about 4-5 swabs to check for infection, had a CBC done 3 times, have had my estrogen and MTHFR gene checked, I’ve been to the gynecologist for my hip lymph nodes, I went to the eye doctor to check my blurry vision (of which they said was due to my prologued steroid use — it is gone now, yea!), I recently saw an integrated medicine doctor for natural treatments and remedies during this process… so, I sought out medical help when I felt it was needed.
To close, I think the biggest battle on Topical Steroid Withdrawal is those who oppose the process.
I fully respect anyones decision to do what they want with their own body. If eczema sufferers are ok with using topical steroids as management for their eczema, then that is their chosen course of treatment. It has absolutely nothing to do with me. Do I go to them and badger them about my opinion about the prolonged use of steroids? No.
Everyone has a right to what type of care they feel is necessary. Those of us who trust the TSW process and do not wish to use steroids anymore because of the research that has been done on the adverse affects of prolonged use of those products, well, don’t feel it’s fair to be picked apart by others who feel differently. This is a choice we have made.
And to further that point, anyone has the right to quit Topical Steroid Withdrawal and go back to steroids (if it’s possible). No one is stopping anyone from doing that. If they feel that they do wish to have topical steroids to manage their eczema, then I wish them the best. I’ll never wish anyone ill health. That’s not the point of ITSAN.
ITSAN isn’t about oppression, it’s about options. ITSAN is here to give us research along with sensitive support to those of us who do wish to continue on with Topical Steroid Withdrawal. There are literally thousands of people who have come out on the other side of TSW and are living steroid-free lives because they chose to be.
I do wish that we all could just have a civil dialogue about eczema and the different ways people feel they wish to go about treating it. Some of us choose to live free of steroids while others wish to continue managing their eczema with steroids (if possible. Some aren’t even able to manage their eczema anymore with steroids because the prolonged use of steroids has given them steroid-induced eczema and their internal functions — adrenals/thyroid/cortisol levels– have gone haywire. Steroid-induced eczema just means you will be attached to steroids, of which, will continue to give you trouble if the prescription isn’t strong enough or frequent enough.)
I am but one person. I share my story and what I have learned about prolonged use of topical steroids. I do not wish anyone to be harmed by any medication. All I preach is for people to truly ask questions and find a doctor that is right for them, a doctor knows how drugs work with your condition, that takes the proper time with each patient, and gives them the best service possible.
I know there are many doctors out in the world who do give the appropriate care. I’ve gotten to meet one in California, Dr. Batra. Unlike my former dermatologist, I was able to have a true conversation about eczema and all it’s intricate ins and outs. This is the type of doctor we need to see more of — the kind that not only knows about a condition, but continues to research and learn as the years progress on new treatments and help.
Whatever you decide to do about your health, I send you love. We are all looking for what is best for us. Only we as individuals can determine that.
I am not an ITSAN affiliate, nor do I speak on their behalf. This is an account of mypersonal opinion of ITSAN, and of how this organization is run. I am an advocate against the prolonged use of topical steroids, and I wish everyone happy healing in whatever form of treatment that may be. Feel free to check out my Youtube videos (BrianaBanos) about Topical Steroid Withdrawal. I am one year steroid-free.
Love, B. R. Wren