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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
November 26, 2025
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A MyLupusTeam Member

Sherron, I agree with others that thoroughness is important, and @A MyLupusTeam Member's suggestions to check your results if possible and consult a university rheumatologist if you're unhappy are great. We MUST be actively involved in our care and learn the significance of our lab findings, and we need doctors who take the time to answer our questions.

Good luck, and keep us posted!

November 26, 2025
A MyLupusTeam Member

Each doctor has their own method of determining lupus. I have had a couple I had to push to do regular labs. One of my doctors went over the criteria for lupus at every visit to see if I was flaring. My current rheumatologist uses labs and asks me questions as well as listening to me. We have gotten to the point where he knows when I complain something is going on because I don't complain about pain whole lot.

Many people here have resorted to seeking a second opinion. If you do so, look for someone with lupus expertise and knowledge. Teaching hospitals are often good for this. Is there a Mayo Clinic satellite campus near you? That might be a good place to start. ๐Ÿ’œ

November 26, 2025
MyLupusTeam

How can you tell when a new rheumatologist is being thorough with your lupus diagnosis?

A thorough rheumatologist should take time during your initial visits to:

* Take your complete medical history
* Conduct a comprehensive workup
* Discuss what to expect from your diagnosis and treatment
* Explain what the coming weeks Show Full Answer

How can you tell when a new rheumatologist is being thorough with your lupus diagnosis?

A thorough rheumatologist should take time during your initial visits to:

* Take your complete medical history
* Conduct a comprehensive workup
* Discuss what to expect from your diagnosis and treatment
* Explain what the coming weeks, months, and years might look like
* Set up multiple appointments if needed to answer all your questions

Keep in mind that your diagnosis may not be fully established during the first visit, even though your PCP initially found your lupus. The rheumatologist needs to do their own thorough evaluation.

If your current rheumatologist doesn't seem interested in discussing your diagnosis or concerns, this might not be the right fit. The relationship with your rheumatologist is often a long-term one lasting 10, 15, or even 20+ years. You should feel comfortable asking them anything about your treatments, side effects, symptoms, and worries. Consider asking for recommendations from others in your area or reaching out to local support groups like your Lupus Foundation of America chapter. You can also search the American College of Rheumatology database to find other rheumatologists if your current one isn't meeting your needs.

A good rheumatologist will be curious about your condition, patient with the process, and willing to have ongoing conversations about your care. If you're not getting that, it may be worth seeking a second opinion.

November 26, 2025
A MyLupusTeam Member

Do you have a patient portal with your doctor's office? On MyChart we can see our results ourselves and they explain what each lab test is for. You can see for yourself what is out of range. It is important for us to know our lab results and not just rely on the doctor. My nephrologist orders labs the week before our visits and goes over everything with me line by line.

You might be able to call your doctor's office and request an email or fax if you don't have a patient portal setup. Most medical facilities have patient portals these days. I hope this helps. It sounds like you could use the peace of mind. ๐Ÿ’œ

November 26, 2025 (edited)
A MyLupusTeam Member

I just got a new rheumatologist because mine retired, and the new one (at the same office as the last) refused to look at positive ANA history, focused on one negative test two years ago, refused to look at biopsy evidence, told me my butterfly rash was just acne, and my joint pain was just orthopedic, she even said my symptoms were all attributable to diabetes, but I don't have diabetes. Clearly, she was just running me off. Keep copies of all records/labs/tests and get your GP to refer you elsewhere. Thoroughness is important.

November 26, 2025

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