Living with Rheumatoid Arthritis | Being Proactive about My Health | Wanting a Better Quality of Life | Trying to Avoid the Side Effects of Medication | Having Concerns about the Impact of the Test | |
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Patient | “I was just devastated, I couldn’t even, for an afternoon get dressed, couldn’t pull up the zipper on my pants, and I just lost so much weight.”b | “You want to do something about it [RA]. It’s not just a matter of kind of thinking you’re going to get over it”a | “[Treatment would] minimize sort of like the long term impact of maybe like hunching and succumbing to the pain. So that was really good.”b | “And of course the medication is affecting all the other things, the liver, the kidneys. Your skin, your hair, like everything. Eyes.”b | “And you could have some kind of decision tree or flow chart. Okay, so I’ve got this positive marker, now what?”b |
First Degree Relative | “She [family member] had a life and then once the disease came and took it from her, she didn’t [anything] anymore. She couldn’t do things.”b | “If there were perhaps a treatment that were extremely preventive and very effective at lessening the risk of developing such a disease, I absolutely would take the test because that to me leads to something that is preventive. That leaves me being able to take some action”a | “If that was a risk for the medication, it’s also a risk for the RA. You’re almost guaranteed to get serious infections and TB is completely likely. So would I rather get those now when I’m strong enough and healthy enough to fight them” | “Especially because of watching my mom with prednisone, if there’s anything that increase the mental risk, that would be like huge for me.”a | “And for me adding any kind of anxiety to it, not because [a test result] necessarily jars me into a realism that I’m not comfortable with, but because I don’t think it adds anything.”b |
Rheumatologist | “They [first degree relatives] want to know [about RA risk] because they think that they can prevent disease in themselves.” | “Well, if I know I’m going to have Lupus then my insurance goes into the toilet, you know, and I don’t want that, so I don’t want to know. I don’t want my family to know.”b |