You may want to consult with the Hopkins lupus group about this, Sallie. I did this once when I was getting a new medication recommendation from my local rheumatologist that didn't make sense to me, and Dr. Petri at Hopkins agreed with me.
June 18
What a frustrating position to be in — caught between two doctors you trust, with your health in the middle! This kind of disagreement happens more than you'd think, and there are some practical steps that can help.
The key is to get both doctors talking about the same picture. Here's what can help:
- Ask for a "quarterback" Show Full Answer
What a frustrating position to be in — caught between two doctors you trust, with your health in the middle! This kind of disagreement happens more than you'd think, and there are some practical steps that can help.
The key is to get both doctors talking about the same picture. Here's what can help:
- Ask for a "quarterback" — Request that one doctor (often your GP or most-seen specialist) oversees your whole care plan and coordinates with the others
- Remind each doctor of what the other has prescribed or recommended, and ask directly about potential interactions or concerns
- Write down both doctors' reasoning — Understanding *why* each one has their position helps you ask better follow-up questions
- Ask your pharmacist — They are an underused resource and can give an independent view on medication safety and interactions
- Bring someone with you to appointments to help remember what was said Most importantly, don't make the decision alone or stop/start anything without guidance. Changing lupus medications without medical supervision can be risky.
If the disagreement remains unresolved, it's completely reasonable to seek a second opinion from another specialist. You deserve a care team that works *together* for you.
June 18
Discernment is real and I love what @A MyLupusTeam Member says to do! And also sit in stillness with that because Rheumatologist and general practioners can have difference of medical advice. This is why it's important for the right medical people to be on your team in instances where a medicine recommendation comes up and there's a disagreement. And ask questions to see where the misalignment is.
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June 20