For instance, he said that topical steroid addictions exists...but he thinks it only happens to people who use it on their face or genitals. I used it on my face, not the other region luckily. He said that within "hours or even minutes" of stopping, a flare would start so a person who has topical steroid addiction (on face/genitals since it wouldn't happen anywhere else) would need to reapply topical steroids several times a day. If I wasn't applying TS to my face daily and more than once, my face probably wasn't addicted. Also, my face looks fine.
(Never mind that I am not supposed to be this pink or that for the first few weeks, I did have red rash on my face then for a few weeks after that my skin was raw on my chin and jaw or that my eyelids are always red or that I itch ALL THE TIME on my face. But yes, my face doesn't look that bad, that's true. ***grumblegrumblegrumble***)
He said that people who use oral steroids (he mentioned prednisone in particular) often flare when they stop it and usually end up with eczema worse than what they started with because the body gets used to the artificial cortisol and doesn't produce as much naturally, becoming addicted to the steroids.
Later on, he said if I was using TS for as long as I had and all over in many different places and at the potency I was using, I might as well have been taking an oral steroid because of the amount of systemic absorption. To me, this says, "Topical steroid addiction/withdrawal is real! And based on my history of TS use, I have it." The doctor, on the other hand, a learned man of medical science, just wouldn't connect the dots the way that I did...
If long-term high potency topical steroid use = oral steroids...
And oral steroids = addiction & flare upon cessation...
Then.....isn't it possible that long-term high potency topical steroid use = addiction & flare upon cessation?I say wouldn't on purpose. Wouldn't connect the dots because when a patient is standing right in front of you saying, "Look, doc, I have all these syptoms, this is my history, here is all this research I've found," and your only answer is to ignore the papers she's brought and say, "That wouldn't happen. Skin thinning is the only side effect to be concerned about. You just have out of control eczema."
He told me all about eczema, asthma, and allergies, as if I've never ever heard about this ~*triad*~ before. They always assume I have these things and when I say, "Nope! Don't have asthma, don't have allergies, neither does anyone in my family. I just have itchy red skin." Like all the other doctors before, he answered that I probably do and don't know it. "I've been tested for allergies and I have no breathing problems," I tell him. He says the one allergy test I did wasn't a patch test so it barely counts since it's too basic. He said that if I did a patch test right now, it would show that I'm allergic to "practically everything" - dust, pollen, grass, perfume - everything environmental and none of it useful because "you can't just live in a bubble!"
It makes me want to laugh because...NO I DON'T HAVE ALLERGIES. I don't have hay fever, I don't sneeze around flowers, I don't wheeze, I don't get itchy in the springtime. Doctors are always so sure of themselves! I asked then if I could get a patch test and he hemmed and hawed and said there's always a huge waiting list for this specialist that does "the best, most thorough test" and it wouldn't be useful anyway because "you can't just live in a bubble!"
He said that a lot of people have food sensitives but that removing them from the diet makes barely any difference and is usually too much work for people. "Eggs and milk are a common one but eggs and milk are in everything. You'd have to read every label! Plus I can't ask someone to stop eating dairy. Who's going to do that!?" he said.
Every vegan ever. And a lot of other people. But yeah, I mean, totally. Who's going to bother reading labels and live with this itchy awful nightmare of a rash? No one. (insert eyeroll)
And also anyone who cares even a little about what's going into their food. I may eat eggs & dairy but I don't want to eat transfat or HFCS or artificial dyes & flavors or foods that sound more like lab experiments than FOOD...so I'm already reading the labels!
The positive - he is the first doc I've talked to who has said that people can be "sensitive" to food and not just allergic. In the past, docs have made it sound like the only thing that counts is severe allergic reaction. If you don't go into anaphylactic shock, you're fine! So I guess that's....something.
He says oatmeal contains nickel and nickel is an irritant for most people with eczema, so I am probably irritated by nickel. Stop taking oatmeal baths and don't wear nickel jewelry. Uh, okay. (insert more eyerolls) Never mind that I haven't worn jewelry in forever, that I am not allergic/sensitive to nickel or anything else, that oatmeal baths are almost always recommended for itchiness, that if I WERE allergic to nickel I'm sure the button and zipper on my jeans would cause far more irritation that a half cup of oatmeal...but yeah sure, you're the doctor and I am just a layperson who knows nothing.
He said the classic eczema line that I have heard a million times: "It's the itch that rashes! First you itch, so then you scratch, which causes the rash!" I just...cannot even deal with this line anymore. I HATE victim-blaming and to me, that sounds an awful lot like it. "Just stop scratching and you won't have a rash." Sure, I'll stop scratching. Thanks, guy! I never thought of that. Also, please explain how I have these rashes on places I don't/can't scratch if it's all my scratching's fault.
He did a skin biopsy. He thinks I might have scalp psoriasis and eczema. He asked if I would use any topical steroids, even just on my scalp, and I said no! We talked about trying UV therapy but I'm not sure if I want to try it this early on in TSW. Plus it requires driving across town during rush hour several days a week to sit in a light box for (literally) two minutes. And I'm sure it's tres expensive!
He said to try Sarna cream, which has no steroids and helps with the itch. However, the label for Sarna cream specifically says don't use it long-term and don't use it on a large portion of your body, so it's not going to be all that helpful. He said if I don't mind the texture of Vaseline, it's a good choice. He said baths are better than showers and I should take at least a 15 minute bath every day. He said he is sure that I "just" have lifelong eczema and there is not much he can do if I don't want to use topical steroids. He asked me several times during the visit if I was sure I didn't want topical steroids, if I thought maybe I would change my mind and take a prescription with me just in case, if I was worried about side effects like skin thinning because it's so rare I shouldn't be "steroidphobic."
It was a complete waste of time and money. So I did the only rational thing: stole the latest O Magazine from the waiting room and took a handful of complimentary mints on my way out. :-D
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