My Biologic Journey
In August 2015 my family and I relocated to a new city. This move put me in unrelenting pain, so much so I chose to see a 2nd rheumatologist. After a 4-month wait, I finally got in to see him. My first encounter with a rheumatologist was 20 years earlier, where, because my blood work was all "normal," I was told no diagnosis could be established to account for the level of pain I had. Discouraged, it was difficult to approach another rheumatologist for many years to come. It was with this move and onset of pain I realized I was ready to circle back around, starting from the beginning. I was in pain, it was worsening, and I needed help.
I was initially diagnosed with undifferentiated spondyloarthritis (USpA) early spring 2016 and begun on weekly Humira (TNF blocker) injections by summer. I first injected this in my abdomen, but then switched to my thigh, as it was better tolerated. Use of an ice pack placed on the injection site 10 minutes before was recommended to ease the stinging pain. Some find self-injection difficult, but I had an advantage; I was working at a dermatology center. Nurses would teach patients to inject themselves for psoriasis and other skin conditions with the least amount of pain with each injection. I stayed on Humira 10 months before it was deemed ineffective for my level of full-body enthesitis and pain.
Trial, error, and side effects
I have had my diagnosis change two more times, firstly during the holiday season 2016 with non-radiographic axial spondyloarthritis (nr-AxSpA), where a blood test revealed I was HLA-B27 positive. This is a genetic marker highly associated with immune dysregulation and increased susceptibility to developing spondyloarthritis. Enbrel injections were initiated but stopped after 3 months because it was also ineffective. A diagnosis of radiographic axial spondyloarthritis (r-AxSpA)/ankylosing spondylitis (AS) was then given summer 2017 after diagnostic imaging revealed swelling and bone edema in my pelvis. It was with this diagnosis that Simponi aria infusions began.
At the same time infusions began, to help with uncontrolled discomfort, I was trialed on and off methotrexate, sulfasalazine, and leflunomide (DMARDs) respectively in combination with Simponi Aria. With these, I endured side effects to include alopecia, gastrointestinal distress, hypertension, and folic acid deficiency, and each was discontinued. I encountered one side effect from the Simponi aria. It was during the initial infusion – burning red hands. With pain meds, allergy pills and ice packs, this side effect ceased 4 hours later and never recurred. I now received pain relievers and allergy pills before each infusion session.
Over time Simponi Aria also failed, not working the fully allotted span of time it should between scheduled infusions dates, and I was on a rollercoaster of pain. I had moderate pain the first 2 weeks following infusion waiting for the medicine to kick in, mild pain the next 4 weeks, with increasing pain while waiting the 2 weeks for another infusion. With the thought the pain could be better controlled, we moved onto Remicade as an appropriate agent. Inflammation became evident in my spinal canal in addition to my pelvis. Although it wasn’t classic SI joint fusion, Remicade was felt to be my best option for pain, stiffness, and joint swelling. With this biologic, time could be decreased between infusions so that I didn’t have to wait two more weeks for more medicine while in severe pain. The only problem is it took over a year to be approved.
I began Remicade infusions for axial and peripheral spondyloarthritis (AxSpA and pSpA) in September 2020, after waiting 16 months approval from the insurance company, by 2 rheumatologists, with 3 appeals filed for denial of the medication. Because I didn’t have the classic storybook diagnosis of hip and pelvis (SI joint) radiographic evidence, but that of pelvis and hip girdle bone edema and spinal inflammation, we had to jump through hoops to get this medication approved. During this waiting period, I relocated again to a new city, began seeing my third rheumatologist, continued Simponi Aria infusions at a new infusion center, and waited - in pain. And, I only began Remicade after a left total hip replacement in June, again stopping and starting it 2 weeks prior and 4 weeks after minimal lumbar spine surgery in October 2020.
So far, I feel better using Remicade as a biologic. I have had no issues with side effects and although it is early, I feel the medication is working as it is supposed to. I still have 2 more surgeries to go and even though my road to better health has been complicated, I do not regret having begun biologic agents. Nothing else seemed to even remotely take the edge off this aching, stiff pain that has plagued my body for about 10 years, and anything I can do to slow the progression of this disease is important to me. The key to this whole journey is to be consistent and truthful with your physician, the medicine, and how you feel. Only then do you move forward.
Does reading AxSpA patient stories help you in your journey?