“My skin is the worst!”
We cannot tell you how many times we hear: “my skin is the worst,” or “I have the longest patch test list.” This might seem like the case to you, but it probably isn’t. We’ve seen the longest patch test lists and our doctors care for hospitalized cases. From pemphigus vulgaris
to generalized psoriasis, drug-resistant recurrent herpes and staph infections, complicated lupus and traumatic steroid rebound cases,*
we’ve seen the worst. We’d go so far as to say we serve the worst on a regular basis. And even if your skin falls in that category, there is hope.
The “worst” cases that get referred to doctors that we know or work with fall into the following general categories: misdiagnosis, impatient or panicked patients, knowing or accidental patient non-compliance, and truly difficult cases (rarer skin diseases or severe cases of a particular skin condition).
This happens in dermatology more often than one might think, and not necessarily because of a sloppy physician. Dermatology has around 3,000 possible diagnoses — more than most medical specialties — and many conditions look similar. We know of a patient treated unsuccessfully for psoriasis, for example, who in fact had syphillis; another referred to a doctor for vitiligo only around her eye sockets who it turned out had an allergic dermatitis to the rubber in the goggles she used for work. Whiteheads can be milia, milia can be warts, atopic dermatitis can be dismissed as very dry skin or mistaken for psoriasis. Because of the thousands of possible conditions, seeing a specialist is key.
Impatient or Panicked Patients:
Certain skin conditions can make one feel desperate. Because the skin is so publicly visible, imperfections can make one a target for bullying or otherwise negatively impact one’s self esteem (sometimes to the point of being debilitating).Other skin conditions can put a patient through hell, such as toddlers rendered sleepless from itching or pain.If a treatment does not work immediately, it is understandable for patients to feel frustrated and seek help elsewhere. The problem is that consistently jumping from doctor to doctor can set back therapy — each physician has to start from scratch. As well, some therapies take time. Steroid-dependent psoriasis patients, for example, need to be weaned off of steroids due to the decreasing efficacy and serious health risks.* But many patients experience a rebound effect which includes a severe flare-up, sometimes more severe than the original condition. In the throes of this discomfort and fearing a total worsening of the condition, many patients want to give up and go back on the steroids. A doctor we know keeps patients who have successfully gone through rebounds and who are now clear on speed-dial — she calls them in to speak with the panicked patients and their families to help calm them down and show them that what they’re going through is temporary and to look to them as proof of getting through it and of eventual clarity.
Desperation can make one do irrational things, including reaching for steroids again, even when not prescribed or outright banned by one’s doctor. Other patients may dismiss a dermatologist’s strict admonitions as “exaggerated”: “Really? I can’t use ANY toothpaste in the world with flavor? NOTHING? Yeah, right.” or “Really? My CLOTHES might be causing my rashes? What-e-ver.” Others may believe their doctors but take decisions into their own hands: “He said I’m allergic to fragrance, but this lavender oil is organic!” And still others might be non-compliant completely by accident. Some patients will be methodical about reading ingredient labels and still miss allergens whose INCI (International Nomenclature of Cosmetic Ingredients) names they don’t recognize as the proper name of their allergen or a cross-reactant of it.We’ve seen patients extensively patch tested, with a fragrance allergy accurately identified, who were then given a “fragrance-free” soap…only to discover at another clinic that the soap contained cinnamic alcohol which, while not listed as a fragrance is in fact related to fragrance. Another patient, fragrance-allergic since childhood, saw her dermatologist confused and angry about an bright rash under her nose — an extended interview uncovered that, due to her allergies, she kept scented candles all over the house and was reacting to the fumes. A highly meticulous psoriasis patient came in livid about a patch on her hand that just wouldn’t go away. Another long interview revealed she had taken up bingo as a hobby, and was reacting to the dyes in the paper and pens that she used to play. Compliance is a big, complicated deal and often requires hours or months…or years…of investigation and ruling out possible triggers.
The truly rare or severe cases can frequently be managed well by a specialist in the particular diseases. Targeted treatments are often necessary and it is ideal to see a specialist who teaches and publishes studies on the skin condition. These specialists will have access to the most innovative and effective treatments — or might even be doing them themselves. A good specialist will also always look at the case systemically, asking for blood work and other diagnostic tests and probably working with a team of doctors in other specialties, from endocrinology to cardiology, etc., as needed. As well, he or she will be emphasizing the importance of overall health and prevention, watching nutrition, lifestyle, allergens, and environmental factors closely.
How can you up your chances of clarity?
1) See a Specialist. Go to a dermatologist who specializes in your condition. Your doctor might be wonderful, but specialists — particularly those who regularly publish or lecture — spend the most time on your exact problem.
2) Get a patch test. This one test is often a game changer. Note that if you’ve had a long history of very sensitive skin, you may need an expanded patch test which can cost more up front but will save you a significant amount of expense, frustration and complications based on random trial and error.
3) Stop random trial and error, self diagnosis and self medication. Unless you are a chemist and contact dermatitis specialist, and happen to have become an expert at the identification and treatment of all 3,000 skin conditions in dermatology, there is just no way to win this game on your own.
4) Minimize. This means use products with the least amount of ingredients possible and use less products in general. Not only does this reduce your risk of a reaction or cross reaction, it keeps you in a more controlled state with less to factor in when you and your doctor are trying to isolate the problem.
5) Reveal everything. Make sure your doctor does a thorough history. Everything is important. What you eat. What utensils you use when eating. What gear you wear or use when exercising, camping or working. What medications or vitamins you might be taking. What you eat. What you drink. What you sleep on. Your glasses. Your mobile phone holder. Everything matters.
6) Stay healthy. Your skin is a mirror for your insides. The more inflammatory foods you’re taking in (junk food, processed foods, sodas, candy, chips, etc.) the more inflammatory your skin. And many skin conditions are closely linked to inflammation. Plus, several skin conditions are related to obesity and diabetes. Getting healthy helps your skin, period.
7) Stay positive (which also helps your skin!) and keep on keepin’ on.
We’ve seen decades-long, steroid-dependent cases turn around with proper prevention alone. Even when more aggressive treatment is needed, prevention helps.
Want an informed ear? Contact us at (212) 217 2762, or via a Private Message on Facebook