EPTSo to start with, I have plaque psoriasis. The details aren't really important, but here's a brief history:
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I was diagnosed about at age 11. At the time, the psoriasis was almost entirely contained on my scalp, with an occasional patch on an arm or knee. It virtually disappeared for puberty, which was really convenient. I would get a small patch here or there, but nothing unmanagable or too unsightly.
Over the past 10-12 years though, it has slowly come back. So I currently have near complete coverage on my back, stomach (waist to mid chest, with a lower concentration above that), and scalp (under hair and a little below the hairline in some places), with high concentrations on my arms and shins, and lower thighs. I also have some under my townails, especially on the big toe of both feet, and I've begun to suspect I'm developing psoriatic arthritis. In short, it's no longer just uncomfortable and unsightly. It's potentially damaging my joints, especially fingers and toes.
The point is, my prosiasis is now pretty severe. There aren't a lot of people with the amount I have.
Over the past 10-12 years though, it has slowly come back. So I currently have near complete coverage on my back, stomach (waist to mid chest, with a lower concentration above that), and scalp (under hair and a little below the hairline in some places), with high concentrations on my arms and shins, and lower thighs. I also have some under my townails, especially on the big toe of both feet, and I've begun to suspect I'm developing psoriatic arthritis. In short, it's no longer just uncomfortable and unsightly. It's potentially damaging my joints, especially fingers and toes.
The point is, my prosiasis is now pretty severe. There aren't a lot of people with the amount I have.
"Surely there must be treatment," you say, and you are correct. Psoriasis is traditionally treated with a variety of prescription creams, lotions, shampoos, etc. The trouble is, psoriasis is auto immune. Your body detects these treatments as interfering with its normal processes, and quickly adapts to them. For me, this generally meant switching to a new treatment regimen every couple months. They're also really uncomfortable, inconvenient, and smell up your clothes, sheets, etc. In the end, traditional treatment wasn't a good choice for me.
Alternatively, a series of injectables have come out. They work by altering your immune system so it doesn't attack healthy skin cells or cartilage in your joints. They're all really effective, but they're also really expensive. Most insurance companies consider the treatments purely cosmetic (which for most people, they are), and wont cover them. This puts these out of reach for a lot of people.
This means I haven't had treatment or any kind in almost a decade. It's partially for the above reasons, but also partially because I sort of feel bad about the idea of treating my psoriasis. It has definitely effected my life. Kids were mean to me, strangers ask me about it, etc. Interestingly, children always ask about the patched on my forehead while adults always ask about my arms. Kids just haven't learned that it's rude to ask about someone's face, which is kind of funny. In the end, it has made me a more patient, compassionate, considerate individual. I'm proud of the person I am, and a large part of that is due to my skin. It almost feels like cheating to get rid of it now, or like I'm turning my back on something.
In the end, life sucks enough without added pressures. For me, psoriasis is one such pressure. I don't want to get into it too much for now, but clearing up this problem should mean a real improvement in my life.
The study:
I recently heard about a new study going on for a drug that's already FDA approved and available on the market. It puts a safe, proven treatment within my reach. Here are some details, if you're interested:
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The study is basically a dosing study for Stelara. For this study, the control group isn't a placebo, it's people who get the normal, FDA approved dose. I'm guarenteed to get the real meds, which is nice. They're just studying the effectiveness of personalizing the dose, which basically means giving it less frequently, perhaps only as often as symptoms return. Assuming the initial doses are effective. I have a 20% chance of being in the control and 80% of being in the other group.
It's a 2 year study. The drugs are free, and they're going to pay me a modest amount of money (enough to cover gas and some incidentals) every time I come for a study visit.
It's a 2 year study. The drugs are free, and they're going to pay me a modest amount of money (enough to cover gas and some incidentals) every time I come for a study visit.
So I applied, they called me back, and I went in to answer some questions and do some quick tests (blood draws and anything you might do in a normal annual physical or other chechup). The doctor overseeing the study was totally psyched to see me. The meeting started something like, "Aw man, you are perfect. You're gonna love this stuff. We've got you covered. Are you ready?" That's not an exageration either. He was fucking stoked. I'm a good candidate because I haven't had treatment in so long, and because my coverage is large enough that I improvements should be easy to spot.
Everything checked out. I started the trial this afternoon. If the initial doses work, within a couple months, I should be psoriasis free for the first time in like 12 years.
I don't know what it's going to be like, but I'm ready. I plan on updating this blog at least as often as I have an appointment for the study. I'll probaly also update as the medication starts to work, or anytime something significant happens. I want to be sure to record my thoughts and feelings as they come.
If anyone has thoughts or questions, please reply. Also, wish me luck.
