March 15th, 2020
Medication changes happen for numerous reasons. Often after a diagnosis like Ankylosing Spondylitis (mine), there’s a trial period when your meds may change over and over before arriving at the most effective ‘medication cocktail.’ And arriving at an effective medication cocktail may take years of trial and error (well not really error, just trial and trial again).
I’ve had numerous medication changes since my diagnosis in 2016, and have just recently arrived at a decent combination: a biologic, a DMARD, calcium, vitamin D, iron, folic acid, prednisone when experiencing a flare-up, a muscle relaxer to help me sleep when the pain prevents it, NSAIDs for increased daytime pain, and antacids for periods of increased stomach inflammation. Phew, I think I got them all!
But the road to the best combination of medications is not always easy or pleasant. To make that road as bearable as possible, it’s important to stay informed and be a part of the decision when it comes to changing medications.
Be Part of the Decision to Change Medication
While your doctor is certainly the medical professional in the room, you’re the one with the most at stake when making medical and medication decisions. And while your doctor knows more about medical therapies, let’s face it: you know more about you. Since you are your best advocate, it’s important that you be involved in the decision-making process when changing medications. Here’s my two cents on how and why:
1. Understand Why You’re Making the Change
A while back I started experiencing increased foot and hip pain (and still am). As seems customary, my rheumatologist sent me for a slew of x-rays to confirm no radiographic damage, and then discussed my options. Joint pain, including hip and foot pain and inflammation, are common with AS, so my doctor suggested that I could change from the biologic Humira to a different biologic (TNF blocker), like Enbrel or Simponi.
The decision was mine to make, so I took a few minutes to assess the situation. The only concern I wanted to address was the increased hip and foot pain, so I was unsure about changing my biologic because it provides so many other benefits. Since the doctor provided no good reason to change from Humira (other than a blanketed ‘it might work better’), I decided to suggest my own solution: a topical nonsteroidal anti-inflammatory drug (NSAID) for the pain. The topical NSAID has proved useful for my foot pain, and I also use it occasionally on my hand and knee.
2. Assess the Risks and Benefits of a New Medication
In the past, I had trouble committing to a biologic (TNF blocker) because of the potential side effects. I’ve heard the same concerns about biologics in Facebook communities. Because of those potential side effects, I actually got off my biologic for several months. That’s when I made the decision that the day-to-day benefits (far less fatigue, less back pain, more energy, and the promise of slowing down Ankylosing Spondylitis disease progression) were more significant to me than a rare chance that I might develop one of the severe side effects like cancer.
When making decisions about medication additions or changes, be sure to weigh the risks and the benefits. Read all of the information provided by the drug manufacturer about the potential risks and side effects. You should always be able to find this information online. Look at the frequency of occurrence for serious side effects and warnings to help gauge your potential risk. While some serious side effects are scary, the increased risk posed by the medication may only be a fraction of a percent. However if the potential risk is greater than that, you might have a hard time being convinced the medication is worth it.
3. Find Out When to Expect Results
When making medication changes, I’ve made the mistake of not considering the amount of time between when the doctor prescribes the new medication and when you actually start feeling results. Recently, I consulted my doctor because I noticed an increase in my pain and fatigue levels several days before my next biologic dose was due. I figured the potential solution would be to change the frequency of my dose, but my doctor suggested changing my DMARD instead.
I weighed the pros and cons and ended up making the change without realizing it could take 1-3 months to start feeling the effects, and up to 1 year to feel the full effects of the new medication. I ended up with increased peripheral joint pain and inflammation for about 2 months before the medication started to kick in!
On another occasion, when my doctor suggested changing from Humira to a different biologic, one of my reasons against making that change was the length of time that I might suffer increased symptoms in between medications. It can take several months before someone begins to feel the effects of Humira, and since Humira has made such an impact on my day-to-day life, I refused to fall back into increased pain and fatigue, even if only for a few months. As I’ve learned, it’s worth asking your doctor how long it may take before you begin feeling results with the new medication, and factor that into your decision.
Plan Ahead for Potential Complications
Moving? Changing Jobs? Going Out of Town? There are a lot of scenarios that may not affect whether you change your medication, but when you decide to change it. As I’ve discussed previously, it’s important to consider future plans when ordering your medication. This is also a significant consideration when you change your medication.
Read all of the information provided by the drug manufacturer about the potential risks and side effects.
For example, you may decide to change your biologic from one type to another and you decide to make the change at your doctor’s appointment, not thinking that you have a vacation planned in two weeks and you just took your last dose of your biologic. Now your doctor is sending out a script for the new biologic and you don’t have any refills left on your old biologic. Even if you put through that script order right away, the insurance company may want to take a few days to think about whether they’ll pay for your new prescription, then the pharmacy may need a day to fill the script, and then you may need that new med mailed to you. What now? Will you get it in time? Or will you be on vacation without either old or new medication?
I’m not always a great planner, am definitely a procrastinator, and so I’ve experienced this scenario. The timing of my medication change was in my control, but I just didn’t plan well enough for it. With that said, I do learn from my mistakes! Hopefully my mistakes can provide useful anecdotes for others out there contemplating medication changes!
-Jessica