By Julie Greenwood, as told to Keri Wiginton
Biologics gave me my life back. After taking the drug, my skin became human again. And I went from someone who couldn’t function at all to someone who could work for years.
In 2003 I tried my first biologic. But that’s not where my story begins.
When my psoriasis started in 1991, my dermatologist immediately prescribed me methotrexate. It’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 a severe psoriasis disease. It just kept going over the years. My fingers swelled up like sausages. I could not get off a curb or stand up unaided. I was bent over like a little crone because my back was so sore.
My skin symptoms also got worse. 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 stretched that if I moved it it would split open and bleed.
It felt like I was wearing reptile skin.
I’ve tried all sorts of things to humanize my skin. I even ordered a product from the back cover of a magazine. It was banned in the US and burned my skin. But it also got rid of my plaques. I have scars under my breasts from it.
But I was desperate. I would have put acid on my skin if it worked.
I’ve also tried messy steroid creams. But I could only get them on prescription. My doctor gave me this tiny little tube for a whole month. I have psoriasis all over my body so maybe this tube would last a few days.
I also tried something called Goeckerman Therapy. They put me in a UVB light machine in the morning. Then they smeared me with coal tar and covered me with plastic wrap, and I sat in a room all day. And that was before we had smartphones to talk to.
That worked, but only for a few weeks.
Then I got pregnant at 31. My symptoms went into complete remission. I hoped my body would forget that I had psoriasis. But a few months after my daughter was born, it all started again.
I figured if pregnancy could put me into remission there had to be something that could help me feel better. I was determined to find this treatment. My dermatologist took me into a study where they put me on a diabetic medication. It was wonderful. But then I was switched to another study drug and my symptoms returned.
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 chance. I was afraid of needles.
That’s when my doctor gave me tough love. He said I would have to go to someone else if I wasn’t willing to try and that there was nothing else he could do for me.
That sounds really hard when I say it out loud. But I understand why he said that.
My doctor went over all the pros and cons of biologics. I didn’t have the same anxiety about this drug as I did about methotrexate. I think the main reason was that I had been through so much pain over the past 10 years. Also, I was past those months of remission, so I knew what it felt like to feel good again.
I found it very difficult to give myself that first chance. But I did it in my doctor’s office. I remember saying to my parents a few days after that first shot, “I may be crazy, but I think I’m starting to feel better.”
Within a few weeks my skin started to clear up. And it was completely clear after about 6 weeks. But what really struck me was that after just 2 weeks I was able to walk like a normal person. My constant pain subsided.
Biologics helped me do everyday things that come naturally to people without psoriasis. I could do normal mom stuff like pick up my daughter and put her in the sink to take a bath. Not long after, I was able to lean over to place her in the bath. I was able to bend and stretch my body without cracking my skin.
And then there were my sheets. I had always treated them as disposable items. I would bleed on them and all the stuff I put on my skin would rub off. I was only able to keep them for a few months before throwing them away. Now I only have the best sheets.
I know biologics make you more likely to get infections. But I wasn’t really worried about that. I was more concerned that I would get cancer or have a seizure. My doctor put me at ease and helped me feel better.
My teenage daughter also has psoriasis and is taking a biologic. She felt very comfortable when she started her treatment, partly because I’ve been doing it for so long. I also do a lot of educational work. I always tell people to fear the progression of psoriasis more than the biologics themselves. She’s heard that so many times that she knew she shouldn’t leave her disease untreated.
Looking at it now, I think, if I’m at higher risk for health problems after taking a biologic for so long, at least I’ve improved my quality of life over the years. Without the medicine it would have been so poor. That wouldn’t have been a life worth living.
I’ve been on another drug for a little over a year. I’m always scared of trying a new drug. This is the most stressful part of my treatment. I’ve had fairly severe allergic reactions to biologic IVs in the past.
My doctor is very reluctant to change my medication. They only do it when I’m no longer responding to treatment – my joint inflammation is getting worse, for example. When I make a switch, I ask my husband to check on me throughout the night.
Only recently my illness has meant that I can no longer work. I was really hard on myself about it. I felt like a failure. But then I remembered something: I’ve worked three decades past my diagnosis. I need to stop and remember what a great achievement this is. I’m actually a badass which is pretty amazing.
I still have moderate pain that has only gotten worse with age. I’m 52 now. But it’s unbearable to think about what my life would have been like without these drugs. I’ve been going through tough times with my mental health myself lately. But if somehow all organic companies were to close tomorrow, I don’t know what I would do.
It takes a lot of effort and energy to live with psoriasis. And it’s because of this drug that I can do it. I am so incredibly grateful.
Julie Greenwood is an advocate and volunteer at the National Psoriasis Foundation, the National Patient Advocate Foundation and the Patient-Centered Outcomes Research Institute. She lives in Cary, NC with her husband Scott, their daughter Nora, and their two puggles, Molly Malone and Cassie.