My Gradual Biologic Journey
I started on biologics about a year and a half ago.
I was prescribed Humira on a bi-weekly cycle, meaning one injection every 14 days.
I was told at the time it would take up to three to six months for the medication to begin to take effect, but because of my youth, relatively good health and it being my first biologic, I may feel the effects sooner.
I did feel the effects relatively quickly, fortunately. I began to feel improvements within the first six weeks, but the improvements were very gradual, and I found myself longing for the back half of my injection cycle to pass by quickly.
My physiotherapist suggested, based on her personal experience with rheumatoid arthritis and what she had witnessed in her other patients, that I may continue to feel improvements for over a year.
In a follow up visit after a few months, my rheumatologist informed me that we will keep the same bi-weekly injection timeframe and dosage for at least two years before making any adjustments. I saw this as another indication that this process is expected to be long and drawn out.
The first few doses did nothing, but then the improvements slowly began.
Before beginning my Humira prescription, I was essentially rendered useless. I’ve written about this before, but the best way I can sum it up is doing menial tasks like the dishes would drench me in sweat worse than the most rigorous activities do today. If I did a simple clean up after dinner, I would need a shower and to lay down.
At the time, I would force myself to go for a walk up the block. One that should take under 10 minutes but would take me up to half an hour.
The first improvements only lasted a day or two after the injection, but I temporarily regained the ability to do some basic tasks and my walks started to feel more manageable.
The initial improvements felt like a vat improvement on shot day, follow by a few days of reprieve, and then fading back into waiting mode for the injection cycle to renew.
Slowly but surely, I crept closer and closer to getting a full two weeks out of the medication. It got to the point where shot day became the hardest day of my bi-weekly injection cycle because I was waiting for the drugs to take effect.
The biggest setback I faced was switching medications after the 11-month mark for coverage reasons.
I went from Humira to the biosimilar Amgevita, what I like to describe as the AxSpA equivalent of buying generic ibuprofen instead of Advil or acetaminophen instead of Tylenol.
I went from nearly being through my entire two-week cycle with minimal pain and mental fogginess to barely making it through the week, and it took a good three months to get back to feeling well throughout the injection cycle.
The biggest benefit of the switch is my injection day.
Before the switch, I blocked that day off from all social activities as Humira was very painful for not only my injection but for my body to process the medication in the following hours.
Now, Amgevita is missing a certain compound which makes it much less painful to inject and process. As a result, I will do low-key activities on shot day.
The biggest wildcard is the day before shot day, which I have monikered Day 13.
Every second Wednesday is a crapshoot. Some weeks it’s like there’s nothing wrong at all. Other weeks, I can barely move and I’m counting down the seconds to Thursday morning for my shot.
I’m once again at the point where I more or less make it through two weeks for my injection cycle, but Day 13 is my outlier. It makes it particularly difficult to plan around because there are so many variables which can make or break how that cycle will play out.
"I have my life back"
I am writing this for anyone who is interested in knowing the patient experience of using biologics. I was very fearful when I started because there was very little I could find about personal experiences using this type of medication, solely academic articles.
My biggest message for anyone who is choosing to embark on the biologic journey is to have faith and find ways to maintain optimism.
For me, it has been a very slow process, but it has been worth it without question. It has not always been forward progress, setbacks happened.
I’m ecstatic to be writing about this today because there were many moments when I doubted I would get to this place. I have my life back and if you choose to go down this path I hope it works for you too.
Can you tell when a flare is coming?