Realistic Treatment Expectations With RA
Last updated: October 2023
Every time I start a new form of treatment for my rheumatoid arthritis, I've learned that it is key to have an honest conversation with your doctor about what you can expect in terms of outcomes or experiences with the medication, or really treatment of any kind.
It is easy to assume, based on some of the advertisements for various medications, that with treatment you will be able to do all the things that you did before diagnosis. But the reality is, that isn't necessarily the case for everyone. Having realistic treatment expectations allows you to more accurately evaluate the efficacy of your medications so you can make more informed decisions about your treatment plan.
Realistic treatment expectations with rheumatoid arthritis
It wasn't until years after my diagnosis and treatment that I discovered the error of some of my choices. That is, I didn't have a heart-to-heart with my doctor about realistic expectations for the treatment of my rheumatoid arthritis.
What does this mean? Well, I didn't know enough to ask, nor did my doctor volunteer the information that it would be unlikely that I'd get the results from the medicine that I assumed. While I do believe in being hopeful when starting a new treatment, tempering it with reality keeps me from being let down and puts me in a better position when it comes time to decide to continue or discontinue a particular treatment.
What are realistic treatment expectations?
Generally speaking, realistic treatment expectations can vary based on each individual person's level of disease, treatment choices, experiences, and other health conditions. But, basically, every treatment choice "should" result in a certain amount of improvement. The questions are, how much improvement, and what are the potential side effects? If you start a medicine expecting, let's say, an 80 percent improvement and only notice a 30 percent improvement, that will likely impact your choices about whether you will continue that medication or not.
Why do realistic treatment expectations matter?
The very first biologic medication I tried was Remicade. My doctor said, "Let’s give it a try. Many of my patients have had success with it." But I didn’t stop to ask, "What does 'success' mean?" Sure, she meant well in her suggestion. And, honestly, I was so relieved to be finally taking steps to treat my RA that I truthfully expected to finally treat my disease and get my life back. Boy, was I ever misguided.
I fully expected that, as a result of my treatment, I’d be back to my "old self." I wish my doctor would have tactfully found a way to tell me that given the progression of my disease and my other health conditions, perhaps expecting to be back to my old self was simply unrealistic. Yes, she did talk about a timeframe within which we should see results. We talked about possible side effects, treatment schedule, information about vaccinations, and being immunocompromised. But we didn't talk about what would be a realistic idea of disease improvement in the coming months.
She didn't talk about any numbers or percentages of improvement from trials at all. In hindsight, I know those numbers are buried deep in the data for each biologic medication and always check them now. However, back then, especially early in my diagnosis, my head was spinning with all the information without the energy or brain power to give the whole thing any amount of clear thought.
Expectation versus reality
Had I known that it was more realistic for me to expect perhaps a 30 or 40 percent improvement instead of 100 percent improvement, I probably would have stayed on the medication longer. Instead, I thought it was a big fail because, despite the medicine, I still struggled with "noticiable" fatigue, joint swelling, and pain. So I wrote the medicine off as a "fail," when in reality, given the severity of my disease — plus the addition of my psoriatic arthritis — the improvement that I saw on Remicade was actually pretty reasonable, even though I didn't believe it was at the time because my expectations for treatment on the medicine were wrong.
How do I decide whether it's worth it to continue?
After a reasonable amount of time, you will have to choose whether or not to continue that treatment. So how do we decide if it is worth continuing that treatment or not? Maybe the medicine helped with fatigue, but not with pain. Or perhaps you had the same number of flares, but they were less severe.
In my experience, the best way to evaluate my treatment expectations versus reality in order to make good treatment choices in the future is to document my symptoms daily. It doesn't need to be elaborate or anything. It just needs to give you an idea of whether the medicine meets expectations or fails to give you the improvement that you hoped to see.
Discussing treatment expectations with your doctor
All in all, this is absolutely one of my first pieces of advice for someone when they first learn about their diagnosis and anytime you start a new treatment: Always speak with your doctor or healthcare provider to be very clear about best case and worst case scenarios for each treatment choice.
Information, no matter how vague, will help you decide on treatment options, and making the right choices can change the whole trajectory of your rheumatoid arthritis journey.
Have you struggled to afford your RA medications?