Transitioning to a New Medicine: It's Not as Easy as You'd Think
Like so many things about managing life with psoriatic arthritis, transitioning to a new medicine is much more complicated than you might think. If you happen to think it is an easy process, then perhaps you just might be one of the lucky few who have not lived through the experiences that many of us have.
In my case, I was changing from my 4th or maybe 5th biologic to the next one. You might think this would be easy, even a no-brainer. After all, I’m certainly not the first patient to transition from one medication to another. But there are quite a few things that most non-PsA people don’t seem to understand.
The painful hoops of accessing new treatment
In order to need to switch medications, you must prove that the current medication isn’t working anymore. It isn’t enough to simply think that it isn’t working or even to tell the doctor that your fatigue level is too high. Nope, often we need x-rays, increased levels of inflammation in our blood work, and physical exams of swollen joints, and evidence of multiple flares.
This is because (in the U.S.) most insurance companies require proof that you have failed a medication in order to be approved to try something different. In addition, doctors usually like to “rule out” extenuating circumstances like temporary stressors (such as colds or injuries) that could have contributed to increased numbers of bad days.
You want me to wait how long?
As a result, a typical patient will likely experience at least 3-6 months of consistent or increasing pain in order to evaluate whether you have truly failed the medication. Or to rule out if there were possibly other extenuating circumstances that may have triggered the flares. Sometimes it takes even over 6 months to get an appointment for a medication reevaluation.
So let’s say it takes maybe 9 months for you, your doctor, and your insurance to simply decide it is time to try a new or different medication. But you can’t simply get prescribed the medicine and pick it up on the way home from the doctor appointment like you would an antibiotic, for example. This is yet another thing most non-PsA people don’t understand.
Being mindful of the overlap
You can’t overlap biologics. For example, I recently switched from Stelara to Tremfya. My Stelara was on a 12-week dosing schedule. So when it was time to switch to Tremfya, I had to wait until my last, already proven unsuccessful, 12-week round of Stelara was up.
So here I was, having spent the better part of a year proving that my Stelara had stopped working. Then I found myself just waiting around some more for the 12-week window to pass so that I could then start my Tremfya. Time sure flies when you are having fun!
Is it really helping?
When it comes to biologic medication in particular, once you are actually able to get your hands on them, you have to follow the prescribed loading dose schedule. The schedule varies depending on the particular biologic. In my case, my Tremfya was scheduled as my first dose (week 0), the second loading dose 4 weeks later, followed by an 8-week (2 month) maintenance dosing schedule.
So as I sit now, writing this up, it is 6 months (4 doses) later and I’m not sure yet if it is actually helping. But more to the point, if you’ve been following along with the math, you might see I’ve now spent just over a year and a half (yes, 19 months!) without any sort of effective treatment attempting to stop my disease progression.
I’ve lost so much
That means I’ve lost a year and a half of ground in this war against my psoriatic arthritis. I’ve lost countless hours of quality time with my children, my husband has lost the help of his partner (and some would argue, better half). Birthdays, holidays, and even regular days have all gone by with me barely hanging on. My house has fallen apart around me. All because I needed to transition to a new medicine.
In case there’s still any doubt in your mind, I’ll make it clear. Transitioning to a new medication is not as easy as you’d think.
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?