I was terrified of biologics as a treatment for PsA — until it changed my life.
I was 19 when I started noticing patches on my elbows. I thought it was just really dry skin but, despite moisturizing, the patches grew.
A few years later, a doctor finally identified these patches and the ones that had sprung up on my knees as psoriasis.
At the time, I knew nothing about psoriasis. I had no idea that it was an autoimmune disease. I saw it as nothing more than a cosmetic nuisance.
Years later, when my joints began to ache, it didn’t occur to me that my pain could be related to this skin condition.
Psoriatic arthritis (PsA) is inflammatory arthritis closely related to psoriasis. Approximately
Most people who develop PsA already have skin symptoms, although some people develop symptoms of arthritis before skin is visibly affected.
In my case, I first noticed stiffness in my hands and pain in the joints of my feet. The pain and stiffness were worse when I first woke up and tended to improve through the day.
These were not symptoms that dramatically affected my ability to get through my day, and so I largely ignored them.
Eventually, I went to a rheumatologist to figure out what was going on.
PsA is typically diagnosed by first ruling out other conditions, such as rheumatoid arthritis, Lyme disease, and other issues that cause joint pain.
That rheumatologist told me, “You’re young, your symptoms are mild. I wouldn’t worry about it too much.”
He prescribed ibuprofen and told me to come back when it got worse.
A few years later when my symptoms were worsening, I sought advice from a different rheumatologist. This doctor took the opposite approach.
After listening to my history for less than 5 minutes, she declared that I needed to start more aggressive treatment immediately.
With no discussion of pros and cons, she shooed me out the door with a prescription for methotrexate — an injectable drug that’s commonly used in the treatment of psoriasis.
I did some research, got freaked out, and ditched both the prescription and the doctor.
Eventually, the psoriasis that I’d always seen as a mild nuisance had spread enough to affect my self-esteem.
I was a middle school teacher at the time, and my students were constantly saying things like, “Wow, Mrs. Carns, is that poison ivy? What happened to you?”
I made an appointment with a new dermatologist to see what advances there might have been in psoriasis therapies.
This new doctor felt the pockets of fluid in the knuckles of my hand and asked if I’d ever considered using biologics.
The treatment of an autoimmune disease often involves some mechanism for suppressing the body’s immune system. The trick is to suppress only the part of the immune system that is overreacting, leaving the rest of it functioning normally.
This is where the so-called “biologic” treatments come in. These treatments are able to target, with greater and greater specificity, the unwanted immune response.
I told the dermatologist how the rheumatologist’s suggestion of methotrexate had scared me off, and she listened patiently to my concerns.
I was in my early 40s and I was worried about starting a medication that I might have to continue for the rest of my life. Plus, the idea of suppressing my immune system, on purpose, was deeply unsettling.
What my doctor explained to me, however, was that my relative youth was itself an argument for addressing not just my symptoms, but the progression of the disease.
While I may have felt the discomfort was manageable at the time, eventually, PsA was likely to cause irreversible joint damage. This could lead to increasing levels of disability.
Still relatively young and mobile, I had the opportunity to stop or slow the disease before that damage occurred. This was the argument that finally convinced me.
Facing my fear of injections
Once I’d decided to go on biologics, however, I had to confront the delivery method.
One of the drawbacks of biologics, for many, is that they are delivered via injection — and most people self-inject at home. This prospect was daunting to me, to say the least.
Thankfully, I was able to enroll in a patient support program run by the pharmaceutical company, and a nurse came to my house and taught me how to do the injections.
At first, I felt a lot of anxiety leading up to injection day. Over time, through some trial and error, I’ve found a routine that works for me.
I make sure to remove the injection pens from the fridge at least 15 minutes before administering. I use ice to numb the area and squeeze (or “chunk up”) the injection site with my other hand.
With my current medication, I have a choice between the front of my thighs or my abdomen as injection sites. I’ve found injecting into the abdomen to be significantly less painful because the tissue there is fattier. I’ve never been so grateful for a soft belly!
I’ve now been on biologic treatment for over 4 years and have a wonderful rheumatologist who works with my dermatologist to coordinate treatment.
My doctors check my blood work every few months, and so far I haven’t had any negative side effects.
There have, however, been some benefits I wasn’t expecting.
Until I started using biologics, I didn’t realize that the fatigue I was experiencing, which worsened considerably during flares of my joint symptoms, was related to my PsA.
It was something I had gotten so used to, I didn’t notice until it was gone.
This is often the case for people with chronic illnesses. We become accustomed to feeling a certain way and forget what “normal” even felt like.
If you look closely while I’m standing in the sunlight, you may notice a slight difference in the pigmentation of my arms and legs in the places once covered by large psoriasis plaques. There is no other visual clue that I am a person with psoriasis.
As for the PsA, my hands are sometimes still stiff in the morning, and the joints in my toes ache a bit during cold and rainy weather.
In addition to my medication, I try to keep my joints limber and muscles strong with yoga and other weight-bearing exercises.
A recent set of X-rays confirmed that my primary goal of treatment has been successful: There was no indication of joint damage whatsoever.
In the end, I’m glad I found a team of doctors who listened to my concerns and took me seriously.
I’m also glad I was able to overcome my fears and begin treatment, improving my quality of life both today and, hopefully, for decades to come.