Ask Our Health Leaders: Advice for the Newly Diagnosed
Last updated: January 2024
What do you wish someone told you about managing rheumatoid arthritis (RA) when you were initially diagnosed?
Most people living with RA would likely agree that there is a lot of information to navigate when newly diagnosed. From learning about the different types of doctors you may need to see to the many different treatment options and the condition itself, it can be overwhelming.
What advice do you wish you received after your RA diagnosis?
We asked a few of our RA Health Leaders if there was any advice they wish they had received early after their diagnosis. Here’s what they said.
The trial and error cycle of treatments
Janeil Whitworth: When I was first diagnosed, no one told me how much trial and error goes into the daily management of RA. I foolishly assumed you tried a medication and it always worked 100 percent of the time to manage pain. Boy, was I wrong!
Now, I understand that there's quite a bit of guessing and reassessing. Sometimes you nail it on the head with a particular drug, but a lot of the time is a waiting game to see if your current treatment helps or not. That's not an easy cycle to experience, and I wish someone had kindly prepared me for that reality.
This or That
Have you switched your biologic with success?
How to manage treatment side effects
David Advent: When I was first diagnosed, I wish someone could have told me how to manage the side effects that come along with biologics. I started Humira shortly after being diagnosed and was immediately surprised at how awful I felt the next day after taking the shot. It almost feels like a hangover: pounding headache, some congestion, and just a general feeling of malaise.
Plus, we have this idea that taking biologics makes you immunocompromised – and they do – but I feel like no one talked to me about how that would change my life. I have to be even more careful now with getting a cold, a sinus infection, etc., as I have had both more frequently since starting Humira. It's rather annoying, and I wish I could have known that before starting this medicine, no matter how much Humira has helped me.
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Have you experienced side effects from Humira injections?
The power of community
Lynn Marie Witt: I wish I had known the importance of managing this chronic illness in a community with others who understand. When I was first diagnosed, this community was not in existence. It was difficult to find anyone experiencing what I was going through.
Knowledge is power. Being able to share our experiences and stories collectively is special. It helps to learn more about rheumatoid arthritis. It also empowers us to make more well-informed choices and better prepares us to advocate as we navigate through the medical and health insurance systems.
This or That
Have you shared your RA story with our community?
How tough life with RA can be
Amanda Osowski: This question makes me well up with tears because I honestly think about it so often. When I was initially diagnosed with RA, I wish someone had told me, first of all, that getting "better" was going to be a long and extensive journey, and that the first medication or biologic I took might not make any difference in my pain levels or other debilitating symptoms.
I wish I had had the validation of my symptoms being appropriately assessed, diagnosed, and treated when I was younger and when they first appeared, rather than waiting until I was in my 30s and diagnosed with another autoimmune disease first.
I wish that someone had told me that even in remission, I’d still have bad days and that those bad days would force me to get creative. That adaptations can feel frustrating, but they can also improve my overall quality of life.
Most of all, I wish someone had told me that managing RA is a little less challenging when you're not alone. I wish I'd known about this community when I was initially diagnosed so the first few years didn’t feel so isolating and scary.
This or That
Do you talk to others about your RA?
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