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I was wondering, has anyone had a doctor that has told you that after 26 years of being diagnosed with Lupus and treated for it, that he doesn't think I even have it because nothing is currently showing up on my blood work and wants me to stop taking my pain pills, Benlysta and hydroxychloroquine when I go back in Sept.? My doctor I had retired last March and this one replaced him. I'm not impressed. I am going to see another Rheumatologist in July.

May 3
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A MyLupusTeam Member

Consider getting a second opinion to be certain. You know your body and our labs don't always match the way we feel. One time my doctor put me in the hospital immediately after an appointment when I swore that I felt well. At that time, he did the right thing. I was flaring and was in the hospital for a week. Another time I felt bad, but my labs were good. This is an unpredictable disease. Each rheumatologist determines things differently. Please keep us updated.

May 3
A MyLupusTeam Member

I have had it happen. My doctor diagnosed me at age 35 with lupus. He retired when I was 54 I think. The next Dr said he didn’t think I had lupus. He knows I have a connective tissue disease but maybe not lupus. He left everything the same as far as medication and didn’t change on my medical records. By the time he retired and when I was around 59 the latest rheumatologist changed my records to undifferentiated connective tissue disease. I take this as good news since it’s not progressed significantly in 25+ years. But I feel worse than ever. I think lowering my dose of hydroxychloquine based on weight has negatively affected me. 2 pills a day worked much better for me. So long story short, I doctor can make an incorrect call with this disease, one way or the other. It doesn’t mean you don’t have an autoimmune condition. Maybe just not full blown lupus.

May 4
MyLupusTeam

First post done perfectly — welcome! This is such a valid and frustrating concern, and unfortunately, other MyLupusTeam members have shared similar experiences of feeling dismissed or having their diagnosis questioned.

Lupus is genuinely complex to diagnose and monitor. Blood work doesn't always tell the full story — lupus Show Full Answer

First post done perfectly — welcome! This is such a valid and frustrating concern, and unfortunately, other MyLupusTeam members have shared similar experiences of feeling dismissed or having their diagnosis questioned.

Lupus is genuinely complex to diagnose and monitor. Blood work doesn't always tell the full story — lupus can go through periods of low activity where standard markers appear normal, but that doesn't mean the condition has disappeared. Seeking a second opinion in July is absolutely the right move. Here are some things to help prepare for that appointment:

- Bring a full history of your previous diagnoses, treatments, and how you've responded to medications like Benlysta and hydroxychloroquine
- Keep a symptom tracker noting any flares, fatigue, joint pain, or other changes
- Ask specific questions like "What would stopping these medications mean for my long-term health?"
- Consider using your patient portal to message your concerns in writing, creating a clear paper trail

Please don't stop any medications without proper medical guidance from a doctor who fully understands your history. Abruptly stopping treatments like hydroxychloroquine can trigger flares.

May 3
A MyLupusTeam Member

Oh, I know, but it's been a year that I have been with this doctor and I still don't feel comfortable with him. He doesn't seem to be thorough. He ask basic questions, and jokingly I said I should stop ALL of my mads and he said that sounds like a great idea. I told him I was kidding and he said he wasn't. The more I think about it, I don't feel comfortable stopping some of these all at once.

May 4

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