My nr-AxSpa Biologic Journey: Part Two
Editor's note: Read part one of Pamela's journey here.
The next step in my biologic journey was Cimzia. First, the bad news: the only approved version of this medication for my non-radiographic AxSpA was a syringe rather than a pen. I was very intimidated by having to actually control the needle and rate of injection.
Next, the good news: the syringe actually hurts less than the pen injector did! The one thing I did find with Cimzia compared to the other biologics was that the medicine is much thicker than Humira, Cosentyx, or Enbrel. This means that the injection moves a bit slower and can become painful towards the end of the injection because there is less space for the fluid to go.
My symptoms remained
Overall, this medicine was easy to inject and less painful than others previously. Sadly, this medication also did not reduce my symptoms or systemic inflammation. This was even easier to notice after how effective Enbrel had been in reducing my fatigue and pain.
Out of answers and frustrated, my rheumatologist and I decided to go back to the drawing board. Still mentally stuck on Enbrel, I did some research into the reactions and found that there is one form of administering the medicine that comes with fewer additives which commonly cause reactions.
Back to Enbrel! This time around I tried the multi-dose vials rather than the injection pen. The multi-dose vials do not include latex and other additives that commonly cause allergic reactions. Frustratingly, insurance approval had to start over because the medicine was being administered differently than my previous prescription. So after waiting several weeks, I finally got my kit and was ready to go.
Decreasing injection site reactions
The multi-dose vials are small vials with the Enbrel medicine in them. In order to make them injectable and effective, I first have to mix the medicine with a solution. The vials also come in half the dose of what I need, so I have to make sure I inject both weekly. This new system of administering the medicine has been a complicated learning process, but I can say that I have seen a decrease in my injection site reactions.
I no longer have resurfacing of previous sites and the individual reactions continue to decrease with each injection. I am still seeing a decrease in my fatigue and my pain. It is exciting to feel like I have finally found something that is effective and that I have been able to work around insurance, allergic reactions, and four different biologics! I am still struggling with pain on a daily basis, but feeling hopeful for the future of my treatment plan.
Everyone is different
The moral of the story is that there is absolutely no “one size fits all” approach to using biologics to treat axial spondyloarthritis. I recommend keeping track of symptoms and dosage as you try different medications because this will make it much easier when discussing options with your physician, or if you decide to retry a previous medication.
It can be incredibly frustrating to feel like you haven’t found the right medicine for you yet, but you must keep the faith that something will work. I tried to focus on changes within my control that would improve my symptoms like an anti-inflammatory diet, frequent exercise, and reducing stress as much as possible.
Can you tell when a flare is coming?