It’s a hurry up and wait process.
From the first doctor’s visit through to now, it has been a journey of constant waiting. It starts with a doctor’s visit, then to testing, more doctor visits, and further testing, just to get the first prescription.
The frustrating this about AxSpA is everyone’s experience is different and there is no universal medication, it’s trial and error until you can find the right medication for your own circumstances.
I was given my first prescription six months ahead of my actual diagnosis. It was Indomethacin, my first NSAID. Our process in British Columbia requires three NSAIDs to be trialed before moving on to other medication options, if necessary.
I was given six months worth of capsules. Naively, I assumed the first medication would simply work and I’d be on my way to better days.
Was I ever wrong
Throughout the ensuing fall, I could not stay healthy. I would get the flu, recover, and the next week I would be sick again. This lasted for about three months until I just stopped taking the Indomethacin by my own accord.
At the time, I still did not have a diagnosis, and I was very confused with what was happening with my body. I was awaiting blood test, x-ray and MRI results. All of which came back negative, by the way, which only added to my confusion.
I did not contact my doctor to ask about medication not working or options to switch. I simply waited for results and thought that might help.
You can take back control
Lesson number one: I am in control of my medication plan. If it’s not working, change it. The doctor can prescribe the medication, but they do not know how it makes my body feel.
Of course, I didn’t learn this until after I had an actual diagnosis and was able to do a bit of research. In the fall, I was just extremely confused and convinced that the Indomethacin was contributing to how often I was sick.
My rheumatologist told me there was no known affiliation with Indomethacin and constant illnesses as I’d experienced, but I’m still convinced it was the cause because it hasn’t happened since.
Nevertheless, it was time to move onto the second NSAID: Diclofenac.
Within the first week of my new prescription, I was feeling great. My symptoms had mostly abated and I was back to flying high and fast through life as I was accustomed to.
This NSAID also stopped working for me
After three months, the Diclofenac quit working for me. I rapidly started feeling worse and worse, so I got in touch with my rheumatologist about it.
Lesson number two: medication effectiveness can deteriorate.
I was then prescribed my third NSAID, Naproxen. This medication had absolutely no help whatsoever, but I had to try it for a month to be sure. It was a frustrating and grueling month of feeling awful but I had to wait the allotted time to see if these meds might work for me.
They did not. It was again time to try something new.
So I started a biologic
At this time, my most recent blood work had shown elevated CRP levels in my blood. For the first time, I had some evidence of inflammation in my body. Because of this, I was on the minimal cusp of being eligible for a biologic.
Now, I’m trialing Humira. Three to six months is the expected waiting period.
More waiting. What happens if this one doesn’t work? How long will I have to wait to find a medication that works for me? Do I have to wait six months in more agony?
Fortunately, it seems to be helping. I can only hope this is the right treatment for me, and only time will tell.
Does reading AxSpA patient stories help you in your journey?