My Decision to Stick with a Biologic, and How It’s Helped
The decision to start any medication is one that I do not take lightly. I do my due diligence, ask lots of questions at the doctor’s office, thoroughly read the drug information provided by the manufacturer, and try to figure out whether I really need the medication.
When it came to taking a biologic with a seemingly endless list of potential side effects, the decision was that much more difficult. My rheumatologist at the time strongly advocated for starting Humira, and since I knew little about AxSpA or it’s treatment, his advice was a big factor in my decision (it was only several rheumatologists later--I’m now in the search for rheumy number six--that I realized how that first rheumatologist’s prescribing tendencies were much more lax than others, but that’s another story altogether).
Fear and uncertainty
Despite my concerns, I started Humira as my doctor recommended. I started Humira because I was in pain all the time, because I was battling fatigue on a daily basis, and because I was in the middle of a semester teaching classes at a university and just needed something to work.
Of course, it did not start working right away, which isn’t unusual. I’ve heard stories from other AxSpA warriors that Humira did start working almost immediately, others say it took a couple of weeks, and for some the biologic never helped even after six months. What works for some may not work for others, which is why we play the trial and error game before finding the best fit.
Humira did start to gradually reduce my pain and fatigue within 2 - 3 months. But the longer I was on Humira and the more research I did, I began to worry that I had made the wrong decision. After six months on the medication, I was not seeing an improvement so significant to outweigh the long list of potential side effects looming in the back of my head.
The list of side effects is overwhelming. And the list, taken at face-value, seems like the risks outweigh the benefits. After nearly a year on Humira, the questions regarding its safety scared me. If this drug can increase my chances of developing malignancies, or drug-induced lupus, or liver problems, should I really be on it? When I could not dissipate the fear and uncertainty, I stopped taking the biologic.
Give it another try
Then my symptoms worsened. I started a new job in a new city, so my stress levels were elevated. My AxSpA fatigue returned and took over my life. I struggled to get through an 8-hour day at the office, and when I arrived home I lacked the energy to do anything but change into my pajamas and lay in bed.
After several months of endless fatigue and joint pain, I started researching Humira again. This time, I read the medication guide and prescribing information carefully. My boss at the time, who was also a pharmacist, persuaded me to read some of the information on drug trials to assess the incidence rates for the serious side effects and look at the increased risk compared to that of the general population.
While seeing certain potential side effects on the medication guide can be terrifying, this activity taught me to look at the bigger picture. Yes, I could be in that unlucky less-than-one percent of people who develop a malignancy on Humira, but that risk is barely higher than the risk shown for the control group (those not on Humira). The more common side effects of injection-site reactions (which I’ve experienced) and risk of infection are adverse reactions that I’m willing to cope with.
So with a better understanding of the risks of biologic medications, and another taste of the full-blown effects of my AxSpA without the help of medication, I decided to give Humira another try.
How my biologic helps
I’ve been taking Humira injections every other week consistently for nearly three years now, and I can’t imagine going back to my days of draining, uncontrollable fatigue and joint pain. Without a doubt, Humira has made chronic fatigue a non-issue most days. Even my wife will occasionally remind me how much better I’m faring on my current medication cocktail.
This past year was one of my better years as far as disease activity is concerned, which makes me think my biologic is working even better now than it was a year ago. I’ve spent many weekends this past year out on the hiking trails, which is something I could not dream of doing consistently two years ago.
In addition, I’ve had fewer flares this past year than ever, and the flares tend to be shorter in duration. With that said, Humira does not seem to help the joint pain and stiffness I experience in my peripheral joints, so I’m also taking a DMARD. But all in all, this most recent experience with Humira has been positive.
Please keep in mind that I write about my experience alone, and do not attempt to sway anyone into making a decision about a certain medication. That decision is entirely between you and your doctor. What I do advocate for is doing the research when it comes to medication decisions. Read the pharmacy labels, the drug information, and the medication guides that come with your medication (these can be found online as well)1. Ask your doctor and your pharmacist questions about your new medication, and make sure you get answers that you understand. You are your best advocate, and only you can determine what’s the right decision regarding your treatment plan.
Does reading AxSpA patient stories help you in your journey?