Yes, I've been mainlining AP since New Year's. Need a yogurt thermometer? AP. How about a new baster for that turkey I might cook someday? AP. Cool mist humidifier? AP. When I'm up at 2 am, because I'm stressed and unhappy from working long hours and not-sleeping with the Itchy Rash, I like to buy stuff to make myself feel better, both physically and emotionally. Last week it was the aforementioned yogurt thermometer, baster, and humidifier. But Sunday afternoon I bought something magical and life-changing. I bought a moisturizer with lipids. And lo it is good. Here's the story:
I’d like to shoot at least 3 doctors and a PA right now. I’d settle for slapping my GP, because atopic dermatitis is not really her area. But one dermatologist, one dermatology PA, one allergist, and one doctor who is both an allergist AND dermatologist, should have known about research regarding atopic dermatitis that has been available for several years. In fact, every single practitioner, except the last one, could not even diagnose the condition. Even when I specifically relayed the history of hay fever and the sudden onset of the itchy rash on my legs after a day of intense allergen exposure on March 11, 2007 (a day that lives in infamy in my own mind). They all said “only kids get that.” I knew within the first few months of sleepless midnight research, based on readily-available literature, that what I had had to be atopic dermatitis and was not limited to children. Unfortunately all MY experts were disagreeing with me and I did not get a confirming diagnosis of atopic dermatitis until I spoon fed it to the allergist/dermatologist two years into my itchy nightmare.
But worse than the failure to diagnose the problem, was the failure to care about the cause of the problem. Every one of these medical experts was treating my symptoms. Without exception they offered steroids (creams, pills, shots) and antihistamines (I was taking five different antihistamines per day with no relief at one point). Beyond that they recommended I moisturize and had buckets of Eucerin samples from the Big Drug Company in their offices. Even after I finally got the allergist/dermatologist to agree that I had atopic dermatitis...steroids and antihistamines. And, oh yeah, you should moisturize.
In my initial ignorance, I took the steroids several times until I realized that they were just killing my immune system for 1-2 weeks and as soon as that was over my rash would rebound worse than ever. The only difference was that at the end of 10 days I’d be fat, depressed AND itchy. I went through every anti-itch cream known to mankind and Walgreen’s – hydrocortisone, Benadryl, menthol – nothing could touch this itchy rash. I was awake night after night in itchy agony and spent hundreds of hours researching in an effort to determine the cause of my itchy rash. In desperation and disgust with the inability of western medicine to even diagnose the condition, I went to a Chinese medical college and got acupuncture. I drank a noxious tea of Chinese herbs and bug shells (no kidding it had cicada shells in it). I tried everything, because I was in Hell. I couldn’t sleep. I couldn’t focus at work. I couldn’t wear shorts or skirts. I couldn’t go out in the sun. And not one doctor was able to tell me why or even fix the symptoms. The allergist was particularly unsympathetic when I told him about the dermagraphia and other symptoms and he seemed to think I was a whiner. He finally said he could only treat my allergies with shots and we gave up on each other.
I wound up treating myself with various supplements for my skin like evening primrose oil, flax seed oil, and meds for my allergies like Zyrtec. The nasal symptoms were controllable with Zyrtec, 7 air purifiers in my 1200 square-foot home (really), a bed wedge so that my head wouldn’t clog with mucus while sleeping, and liberal use of a neti pot. I made my own natural moisturizers out of beeswax and oils. At one point I stopped eating wheat for 11 months, thinking it might be Celiac disease (which can be accompanied by atopic dermatitis). But no matter what I did, I still had the rash. (And a swollen lymph node, but who cares about that, right?) I might get better for a few weeks at a time (especially when I went on trips out of the country), but it never went away for long.
In the spring of 2010, I had a crisis when I was exposed to scabies. I treated the scabies at the first sign and thought I had been successful. But when more treatment was necessary, I used sulfur topically and internally, not realizing that I would have an allergic reaction. It burned my skin and gave me hives and anaphylaxis on top of the scabies. And by then I had developed Grover’s disease on top of everything else! I was in – what’s worse than Hell? Is there a 7th Circle of Hell? I don’t know, but I was There. I lost a month of work and life wandering my house between loads of laundry and vacuuming and steaming the floors, exhausted, swollen, itchy, red, and absolutely miserable. I eventually got over the scabies and the allergic reactions and the Grover’s – I was actually HAPPY to take the steroids during that episode – but my itchy rash did not go away. It continued to recur, particularly on my forearms and my shins. I had to go back to the allergist/dermatologist (the only one that even recognized that I have atopic dermatitis) and get another prescription of Protopic (tacrolimus), because that was the only non-steroid that would tame the itch. But at $65 for a greasy (imagine light, fluffy, collie fur stuck to petroleum covered arms and legs) 30-gram tube that lasts for about one week, the immuno-suppressant was hardly an acceptable solution. And it didn’t get rid of the problem – it just stopped the itching.
After three mysterious and increasingly worse episodes of anaphylaxis in 2010, I started thinking that perhaps my rash was caused by something I was ingesting. So I started researching food allergies and began an elimination diet (basically you can’t eat anything tasty – just vegetables, fruit, and meat) to track down my issues. Finally, on the 4th anniversary of the Itchy Rash, at 1 am on March 11, 2011, I found it. It was an article on DermNetNZ (the kiwis have a much better dermatological website than about anything I’ve found here). And the article said that recent research indicates that atopic dermatitis is caused by the deficient production of filaggrin (a filament aggregating protein) on the skin’s surface. The filaggrin deficiency results in damage to the skin’s protective barrier – it doesn’t keep water in or allergens out. For atopic individuals, who are already allergic to various items (grass, trees, cats, dogs, mold, dust mites, etc. for me and many other sufferers), the lack of a proper protective barrier results in an allergic reaction on contact with allergens (like petting my dogs and cats, or doing yard work). Atopic individuals may also react to foods. So in addition to allergic rhinitis or asthma (atopic individuals by definition should have hay fever, asthma, or a family history of one or both) caused by inhaling allergens, atopic individuals may also react to contact with the allergens and/or to ingestion of various foods to which they are sensitive. Wow. This explained everything. Finally, I knew what I was fighting. But how to fix it?
Turns out all I need are lipids. There are apparently three main lipids involved in the skin’s protective barrier, and I’ve been missing them, because I’m defective. A little more research over the weekend led me to one prescription cream and one OTC cream. While waiting to fax the allergist/derm on Monday, I ordered the OTC cream from Amazon (God bless you Amazon Prime) on Sunday and had it in my hands by Monday afternoon – long before I heard from the doctor in response to my Monday-morning fax about the prescription cream. My arms and legs felt better immediately when I tried this cream. And last night, I slept ALL NIGHT. Yes, I spent 7 hours in my bed SLEEPING instead of rolling and scratching and periodically getting up to apply Protopic or maybe heat my arms and legs with my blow dryer to the point of burning just to release the histamines and get a couple of hours of relief before they could build up again. And this morning, I petted my cat in bed. Dangerous and itchy behavior, but I did it. And I feel good. I’m pissed at all the doctors who didn’t keep up with developments over the last four years (or at least failed to mention them to me), but I feel good.
Each and all of the allergists/dermatologists that I saw over the last four years should have been aware of research that has been available since 2007 showing that atopic dermatitis is, in many or most, if not all cases, caused by this defective/deficient production of filaggrin and the resulting break down of the skin’s protective barrier. I needed to know what I was fighting in order to defend myself. If I hadn’t spent hundreds of midnight hours on line researching on my own, I would NEVER have tracked down the cause of my rashes, which in the end were probably just the result of petting my dander-producing four-legged furry fomites – my two dogs and a cat. So thanks for nothing, all you experts who didn’t keep up. I’m getting well without your help.
AND PS: The allergist/dermatologist just called and said, "Oh, yeah, it's a defect in the gene and there are lots of products out there with lipids that will help." W. T. F. Seriously? You could have frickin mentioned this before, instead of saying that I should not use harsh soaps and I should moisturize. Jeez Us.
