Eczema? – No, Vasculitis? – No, RSS? – Yes

Hi Dr. Rapaport,

I am so glad you developed this website and blog. The world needs this information to help people like me. My life has been changed since my office visit to you in May. As you know, what started as a terrible spider bite on my ankle 7 years ago has progressed to TSW and RSS from using topical steroid creams for 5 years, as prescribed.

Over these 7 years I have seen and consulted with 20 doctors, including at least 7 dermatologists, have spent tens of thousands of dollars on treatment, travel, and appointments. This condition has been so debilitating that I left my job of 12 years, gave up my dancing and sports, and became reclusive since it was so difficult and painful for me to be outside of the house.

He cures most in whom most have faith.

Galen

I went from doctor to doctor only to have them do more testing on me, more bloodwork, more biopsies, more venous dopplers, all with normal results, only to conclude that I was a “highly allergic,” “rashy” person whose diagnosis was “eczema” or “contact dermatitis.” Many doctors concluded that I was inadvertently doing something to perpetuate the problem with my food, perfume, or some other factor. And of course the only solution was more topical cortisone creams or prednisone. For years my instinct said that the corticosteroids were causing me problems, but my complaints to the MDs were ignored and dismissed and I was told the symptoms were caused by “stress” since, in their view, topical steroids could not possibly be absorbed systemically (despite the warning in the product box itself.).

In Sept 2013 I discovered the diagnosis of steroid atrophy and topical steroid withdrawal on line and knew that these explained my condition perfectly. I took myself off all corticosteroids. But virtually no treating doctor of mine in NY or NJ acknowledged the possibility. The stress from these dismissals, misdiagnoses, medical bullying, and mistreatment of my condition was tremendous and made my condition so much worse. It led to periods of intense anger, increased depression, hopelessness, and low self esteem and self doubt. In my desperation, I flew out to you in California from NJ and within minutes you recognized this as TSW and RSS and told me that although it will take years, it will go away. Your detailed review of my records, listening and understanding was my oasis in my desert of despair. I walked out of your office after our first appointment (we had several,) and felt completely vindicated, understood and hopeful about my recovery and my future. I have been off topical steroids for almost 2 years and saw you 2 months ago, and these days I am seeing progress everyday, without expensive drugs and treatments. No pain, less swelling, better color and skin, more joy in life, more activity. I commend your knowledge of this area and your persistence, as I imagine you have been dismissed as well. And I am furious at the ignorance and mistreatment of the medical community.

Why did it take 7 years of suffering before finding the one doctor across the country who could finally listen to what I was saying and help me? Why did no treating physician (except for 1) even acknowledge the possibility of systemic absorption of topical steroids despite the warning in the box? What is going on here that either physicians legitimately don’t know about it, or refuse to know about it, and blame the patient? Even a lay person knows that the skin is the largest organ in the body that absorbs and excretes substances at times. What is the real issue here that is preventing proper treatment of this condition? Isn’t there a basic guiding principle in medicine of “Do no harm?” Clearly, we have been harmed. Thank you, Dr. Rapaport, for your research, your persistence, and for being the exception to all the bad medicine that has been done to us.”

Laurie Schlussel, PhD

By Dr Marvin Rapaport, MD|2021-10-19T03:16:57-07:00August 5th, 2015|RSS The Disease, What Is Eczema|Comments Off

About the Author: Dr Marvin Rapaport, MD

In 1978 I initiated and set up the contact and photo dermatitis clinic at UCLA. There was a need to evaluate a large group of patients who exhibited severe eczematoid rashes, especially on the face. Patients were referred from all over Southern California. All patients underwent a lengthy history and examination. Further evaluations included blood studies, allergy patch testing, special sunlight (photo) testing and skin biopsies. From the start it was apparent that most patients experienced a mild dermatitis on various parts of the body that progressively worsened. Their histories always included numerous doctor visits, multiple physicians, and therapy consisting of an increasing amount of corticosteroids. My testing failed to reveal any specific culprit chemicals, cosmetics, perfumes, workplace or recreational exposures. It became increasingly clear that the physician’s therapy, the corticosteroids, was invariably causing the problem. I wrote 7 scientific articles that were published in the most august peer-reviewed dermatologic journals and I gave many lectures at various dermatology meetings. To this day an unfortunate reluctance exists on the part of most physicians to accept this simple concept.