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Members rallied around the frustration of rheumatologists refusing to discuss biologic treatments for lupus and RA, with many sharing that... Read more
It’s interesting when they do a blood test and things come up abnormal and their response is, oh that doesn’t matter or not important for something to come about with it later. 🤔
It can be really frustrating when you feel like treatment options aren't being fully explored with you. Biologics are an important and FDA-approved class of medications for lupus, so it's completely reasonable to want that conversation.
Here are some tips for getting the discussion going with your rheumatologist:
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Yes Natalie, because the way these doctors will pay in your face is wild.
Everyone who's saying this, the Rheumatologist is the doctor but you are the patient. You get to advocate for yourself and tell them your symptoms, how you feel, how you function, what medicines are not working and make them run more tests. Don't just accept them saying "you're not sick enough" because what does that even mean? It's like so you have to look sick, have worst labs or worsening pain? Everybody is so different, and the one thing I know is the Rheumatologist answers to someone, so advocate, do your research and if your treatment isn't right tell them..
My rheumatologist is a NP. she didn't want to prescribe Benlysta. I made an appt with her supervising MD and he did. It definitely improved my pain, and I haven't needed prednisone as frequently 2x year now verses several times a year. My np rheumy told me once you're on it you can never get off. Studies have shown that stopping Benlysta may have your symptoms return with greater effect. Also, Benlysta may not work again. I probably would have started it even if I had been aware this information. I do wish you the best with your lupus journey.
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