Friday, May 26, 2017

You Can Get Used to Anything, but It's Nice Not to Have To

They say you can get used to anything, and they're right. Only now am I letting myself exhale and really experience the extent to which the largest organ in my body has been compromised, and for how long. 

How many different things I've tried over how many years. How many medical doctors, naturopaths, acupuncture, Chinese herbs, oils, and diets I have tried. How many drugs, topical and systemic, I have been prescribed and dutifully taken.

How often I've written about living with a chronic but not life-threatening disease that quietly chips away at your quality of life, and about graciously handling well-intended unsolicited advice, allergies, and magic bullets. How much sleep I've lost to itching and how driven to the brink of sanity I have been by all of it.

How I couldn't nurse my babies for as long as I wanted, because I was bleeding from my nipples, and how the lactation consultant made me feel guilty about quitting anyway and tried to tell me some unscientific bullshit about how my kids would have eczema too if I stopped nursing. (I was nursed as a baby, so, um, no).

How I can't exercise or swim in a pool because my skin can't tolerate sweat or pool chemicals. How there are tiny blood stains on all my clothes and sheets. How the only thing that ever really helped me was a psychologist in San Francisco specializing in skin disorders, and a dilute bath with one cup of Clorox bleach to kill bacteria.

Until now. 

I knew this drug was different, because it was an entirely different category of drugs.That didn't mean it would work, of course, but I had to try. My immune system doesn't work right, but fortunately my mind does, and I have extensive research skills. I knew this was the biggest medical breakthrough for eczema in my lifetime. So I followed the clinical trials closely and I was determined to try Dupixent. 

I battled my insurance company for six weeks, enrolled with the drug company, and sent countless emails to my providers to have shipped to Alaska four syringes at $40,000 a year of mysterious, scary-looking yellow liquid.

It wasn't a steroid and it wasn't an immunosuppressant. It was a "biologic" that works differently than any other type of medicine I'd ever tried. The National Eczema Society has a good description of how Dupixent works:
Dupixent is the first biologic medication approved by the FDA for adults with moderate to severe atopic dermatitis (AD). It is taken subcutaneously (by injection) at 300 mg once every other week.
 

Biologic drugs or “biologics” are genetically engineered from proteins derived from living cells or tissues. Biologics are designed to target specific parts of the immune system that contribute to chronic inflammatory diseases such as atopic dermatitis.

Biologics take an “inside out” approach to treating inflammatory conditions by addressing the issue at the immune system level, the root cause of many diseases.

Dupixent works by blocking a type of protein called an interleukin, or IL, from binding to their cell receptors. Interleukins contribute to a functioning immune system by helping to fight off viruses or bacteria in our bodies. When the immune system goes haywire, it can trigger certain ILs to mistakenly attack the body, resulting in chronic inflammatory conditions such as atopic dermatitis.

Dupixent works on two interleukins thought to contribute to atopic diseases: IL-4 and IL-13. By blocking IL-4 and IL-13 from binding to the receptors, Dupixent curbs the immune system over-reaction that results in atopic dermatitis. A calmed immune system leads to fewer and/or less severe symptoms of AD.
Ten days ago, I got my first injections of Dupixent. At first It didn't do anything, and in fact it was making things worse. I was disappointed but not at all surprised. I was flaring up on my eyelids and my neck. I had to take another bleach bath. I was worse off than I was before. Of course this was one more failed experiment, but at least now I knew.

Then about three days ago, my skin started turning a corner, and I knew it wasn't just another tenuous remission. My eczema was clearing up in places--like the seam where my earlobes meet my neck--that hadn't been free of eczema at any point in my adult life. 

The voice in my head said not to be too excited, that the next injection might cause a setback or another flareup. But I felt different enough this time to think maybe, just maybe, this was the "miracle" I had been waiting for.

It's hard to justify such drastic, remedial medical measures for a common condition like eczema. A condition most people have in one or two little spots that they can fix with lotion. 

People ask me if I've tried lotion. They wonder why I would go to such extremes. I know they mean well. I don't get angry. I know they don't understand what I've been through, and they don't know all the things I've tried to get to this place. They don't understand that living in chronic discomfort in your own skin isn't a cosmetic problem, but a medical one that's worth whatever unknown sci-fi type risks that come with tinkering with your genome.

I'm past the point of caring though. I'm more than willing to accept all of those risks if it means I can stop thinking about eczema forever.



This is me doing wet wraps during a flareup, October 2014. If you're curious, Google it, I'm too lazy to explain!



This is me after 10 days of Dupixent.

3 comments:

  1. Congratulations! That is amazing news!

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  2. I'm crying as I read this thinking there is someone out there who are nderstands what I've gone through for 50 years. I'm in dupixebt, too. I also think omg what if this works. Reach out to me at paularoberts333@gmail.com. I'd love to chat more with you about this.

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  3. Just came across this and I'm literally crying! Haha! Isn't that funny? Crying!! But I've been through so much of this and nobody really understands. It's eczema -- so I have some itchy skin and a few rashes? But you explained it all perfectly here. The lost sleep. The blood everywhere. The tears doing the most simple things like trying to snap buttons on my baby's onesie while every joint in my swollen hands splits open. I got my first injections last week. I've expected nothing fast. I've told myself to just wait and see. But today . . . something is happening. And it feels like hope!!

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