By Julie Greenwood, as told to Keri Wiginton
Biologics gave me my life back. Once I took the medicine, my skin became human again. And I changed from a person who couldn’t function at all to someone who’s been able to work for years.
I tried my first biologic in 2003. But that’s not where my story begins.
When my psoriatic disease started in 1991, my dermatologist put me on methotrexate right away. That’s a drug used to treat joint inflammation, but I didn’t know anything about it. I was only 23, and they gave me this pill with no mention of side effects. It made me so sick that I decided to stop taking it.
But I have severe psoriatic disease. Over the years, it continued to progress. My fingers swelled up like sausages. I couldn’t step off a curb unassisted or stand up straight. I was hunched over like a little old woman because my back hurt so bad.
My skin symptoms got worse, too. My psoriasis started in my scalp, then showed up in my ears and went down my back to just below my knees. My skin was so tight that just moving would make it crack and bleed.
It felt like I was wearing reptile skin.
Years of Frustration
I tried all kinds of things to make my skin more human. I even ordered a product from the back of a magazine. It was banned in the U.S, and it burnt my skin. But it also got rid of my plaques. I have scars under my breasts from it.
But I was desperate. I would’ve put acid on my skin if it would've worked.
I also tried messy steroid creams. But I could only get them with a prescription. My doctor would give me this tiny little tube for a whole month. I have psoriasis all over my body, so that tube would last maybe a few days.
I also tried something called Goeckerman therapy. They put me in a UVB-light machine in the mornings. Then they’d slather me in coal tar and cover me in plastic wrap and I’d sit in a room all day. And this was before we had smartphones to entertain ourselves.
That worked, but only for a few weeks.
Then, when I was 31, I got pregnant. My symptoms went into complete remission. I hoped my body would forget I had psoriatic disease. But everything started up again a couple of months after my daughter was born.
Finding a Biologic
I thought that if pregnancy could put me into remission, there must be something that could help me feel better. I was determined to find that treatment. My dermatologist put me in a study where they gave me a diabetic medicine. It was amazing. But then they changed me to a different study drug, and my symptoms came back.
I went back to my doctor and asked, “What else do you have?” Then he told me about a biologic drug. At first, I said no. I wasn't interested in giving myself a shot. I was terrified of needles.
That’s when my doctor gave me some tough love. He said I’d have to go to someone else if I wasn’t willing to try it and that there wasn’t anything else he could do for me.
That sounds really harsh when I say it out loud. But I understand why he said it like that.
My doctor went over all the pros and cons of biologics. I didn’t have the same kind of fear about this drug that I did about methotrexate. I think the main reason was because I’d gone through so much pain during the previous 10 years. What's more, I’d had those months of remission, so I knew what it felt like to feel good again.
When My Symptoms Improved
I found it very hard to give myself that first shot. But I did it in my doctor’s office. A couple of days after that first shot, I remember saying to my parents, “I might be crazy, but I think I’m starting to feel better.”
Within a couple of weeks, my skin started to clear up. And it was completely clear after about 6 weeks. But what was really noticeable was that after only 2 weeks, I could walk like a normal person. My constant pain eased.
Biologics helped me do everyday things that people without psoriatic disease might take for granted. I could do normal mom things, like pick my daughter up and put her in the sink to take a bath. Not long after that, I could lean over to put her in the bathtub. I could bend and stretch my body without cracking my skin.
And then there were my sheets. I’d always treated them as disposable. I’d bleed on them, and all the stuff I put on my skin would rub off. I could only keep them for a few months before throwing them out. Now I only have the best sheets.
Considering Side Effects
I know that biologics raise your odds for infections. But I wasn’t really worried about that. I was more concerned that’d I’d get cancer or have a seizure. My doctor reassured me and helped me feel better.
My teenage daughter also has psoriatic disease and is on a biologic. She was very comfortable starting her treatment, partly because I’ve been on them for so long. Plus, I do a lot of advocacy work. I’m always telling people they should be more afraid of the progression of psoriatic disease than of the biologics themselves. She’s heard that so many times that she knew not to let her disease go untreated.
Now when I look at it, my thought is: If I do have a higher chance of health problems after taking a biologic for so long, at least I’ve boosted my quality of life for all of these years. It would have been so poor without the medicine. That wouldn’t have been a life worth living.
I’ve been on a different drug for a little more than a year now. I’m always afraid of trying a new medication. It’s the most stressful part about my treatment. I’ve had pretty serious allergic reactions to infusions with biologics before.
My doctor is very cautious about changing my medicine. They only do it if I stop responding to treatment -- my joint inflammation gets worse, for example. When I do make a switch, I’ll ask my husband to check on me through the night.
Only recently has my disease made it so I can’t keep working. I was really hard on myself about that. I felt like a failure. But then I remembered something: I worked for three decades beyond my diagnosis. I have to stop and remind myself of what a major achievement that is. I’m actually a badass who’s pretty amazing.
I still have a moderate level of pain that’s only gotten worse with my age. I’m 52 now. But it’s unbearable to think about what my life would’ve been like without these drugs. I’ve gone through hard times, even recently, with my mental health. But if somehow all of the biologic companies shut down tomorrow, I don’t know what I'd do.
It takes a lot of effort and energy to live with psoriatic disease. And it’s because of this medication that I can do it. I’m so incredibly thankful.
Julie Greenwood is an advocate and volunteer with the National Psoriasis Foundation, National Patient Advocate Foundation, and Patient-Centered Outcomes Research Institute. She lives in Cary, NC, with her husband, Scott, daughter, Nora, and their two puggles, Molly Malone and Cassie.