Various biologic medications

Part 1: My Story with Biologics – the Good, the Bad, and My Ugly

I think it’s important to share treatment stories of failures and triumphs. My journey with biologics for psoriatic arthritis started in 2013. Back then, there wasn’t much accurate or helpful information online for my conditions like psoriatic arthritis and Crohn’s disease. These days, there are a host of voices and stories.

The problem is, a lot of stories are scary and the advice still isn’t great. It’s one of the reasons I got involved in health advocacy. Without biologics, I would not be here today writing this. Here’s my story with biologics for psoriatic arthritis — the good, the bad, and my ugly.

Starting biologic use with Remicade

I finally started Remicade in the spring of 2013. By then, my psoriatic arthritis was full-blown. I could barely make a fist. My fingers were so stiff and swollen. It was near impossible to type more than a few minutes without severe pain or my fingers tingling or--worse--going numb. Walking felt like shards of glass were embedded in the soles of my feet and my lower back was on fire.

As for my skin, it was flaring in very sensitive areas, which made it difficult to sit for long periods of time. I also have Crohn’s disease, which was my primary disabling disease before being forced to wait almost a year for insurance approval of a biologic treatment.

A biologic isn't an instant fix for psoriatic arthritis

Remicade was not an instant fix for me. It was a slow burn. One of the things I wish I had known in advance was symptoms of an allergic reaction and when to alert a nurse. The nurses at my first infusion center were neglectful. They catered to the cancer patients and rarely checked on me. I discovered hives during my second infusion and they did nothing. I had to call my doctor’s assistant on the other side of the office for her to force them to give me Benadryl.

Remicade is only available in infusion form. So, it is a necessity to have a good infusion center or traveling nurse that makes you feel safe and heard. I cannot emphasize this enough.

Adjusting to biologic use

After completing the first three loading doses, I went another eight weeks to see when and if symptoms returned. We also switched infusion centers. Symptoms came back by week four, and by week six I was miserable again. After that, my doctor moved Remicade to six-week intervals. Some doctors will test for antibodies and serum levels, which is called optimization. Back then, it wasn’t common to test because insurance usually rejected paying.

I lasted on Remicade for about a year before developing a severe allergy to it. In that time, my joints, skin, and Crohn’s symptoms somewhat improved. I never came close to remission, but I definitely had better days.

I knew my time on Remicade was growing shorter as symptoms came back harder and faster after each infusion. The allergy my nurses were managing during infusion intensified, as well. However, just because I experienced allergic reactions, I will never tell someone to not try this biologic for their psoriatic arthritis. It saved me from the brink of disaster and has helped countless others over the past two decades.

Transitioning to Humira

In the summer of 2014, I started Humira. Due to my allergic reaction, my team of specialists wanted to wait a little while before starting a new medication. We also had to deal with the insurance approval process all over again. Thankfully, that second round wasn’t as complicated as the first.

Humira comes in a syringe or auto-injector format. I chose the auto-injector contraption because it was impressively easy to handle to use for my stiff arthritis hands. Even during my Remicade heyday, my hands were not very cooperative. One of the biggest complaints about Humira back I’ve seen was about its burning sensation while injected.

I fought back against the fear of the burn by telling myself that it’s a few seconds of pain for a week or two of relief. I also used the burn as a mental note that the medication was going in properly. Today, Humira has a citrate-free injection, which means no more burn.

Seeing progress

Humira bought me about 18 months of being able to live life a little more easily. My skin, joints, and guts would provide some good days, but my inflammation markers remained high. Another measurement my specialists looked at was quality of life; mine remained pretty low on the scale in terms of pain, swelling, stiffness, skin flares, and Crohn’s symptoms.

Toward the end of my time on Humira, I was injecting weekly. Once symptoms began returning a few days after injection, I asked my rheumatologist if she could run an antibody and serum panel. It was 2016 and we had evolved!

Have you tried using a biologic for psoriatic arthritis? Share your experience with us.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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