This is different information about my experience with a Lupus diagnosis.

I was diagnosed by a leading Rheumatologist in Minneapolis as having it. I tested positive but I had none of the classic symptoms. My symptoms of joint pain and fatigue were increased.
I stayed out of the sun even in the house, and wore hats and long pants and shirts with long sleeves year round. I lived with the lupus diagnosis for 2 years on top of 40 years of Rheumatoid Arthritis.

I was treated with a chemo IV drug for a year that “was not approved for Lupus but had shown promise with treating it.” It had no effect on my symptoms.

That rheumatologist retired and I went to a new one. It turns out that if you have previously taken a TNF drug it can cause the Lupus test to be positive but you do not have Lupus. (I had been on TNF medication IVs for 10 years and they were so so successful the Rheumatologist I had at that time thought I was in remission and weaned me off all medications. My symptoms returned but the Remicade was no longer effective. Breaks in taking TNF medications often are not effective when resumed. That Rheumatologist had also retired.

We did a variety of medications for over a year that were not helpful and some made me sicker. She finally started me on a different TNF medication and I have had great results for the past two years.

“Great results” does not mean symptom free! I had Rheumatoid nodules that have worsened in my feet and new ones appear in new joints. I take short naps most days to help with fatigue.

It means with diligence I am able to maintain my daily activities, gardening weight training twice a week and twice daily hour sessions on a stationary bike at 80 years old.

I was diagnosed with tumid lupus which was diagnosed by biopsy of skin in 1994. Only 20% of those with tumor Lupus develop SLE I was told. I was diagnosed with SLE (systemic lupus) several months later. . Symptoms were severe fatigue. Hands swollen. Severe headache. Blood test positive ANA speckled pattern. Had to stop working for 2 years due to fatigue. After a few years Lupus went into remission. Now, over 20 years later, I was diagnosed with inflammatory arthritis. Eventually they decided it was rheumatoid arthritis. I also have esophageal issues and it appears to be a combination of autoimmune diseases. GI says mixed connective tissue disease. Rheumatologist says it’s a combination of things. Doesn’t matter since treated the same. Hope your treatment goes well.

Have you looked into Dr Brooke Goldner of the Goodbye Lupus Protocol? I converted to zero-negative SLE and positive for RA after 6 months. I took on the Goodbye Lupus protocol and I’m negative for RA now too after 32 years post diagnosis. I’m on a strict vitamin supplementation regimen and diet. She’s on YouTube and all social media as well as her website. I’ve been on every drug protocol for RA and can’t believe I’m pain/symptom disease free. It takes a lot of dedication and support from family. Good luck on your journey!

Thanks Elyse….I don’t have fatigue now but did have it 6 months ago…..that passed…..The only symptom I have is RED cheeks and my hair has been thinning lately….I was concerned as I NEVER had flushed cheeks…..Finally, if I do have Lupus, I figured they would probably treat it they treat RA and SS…..I’m due to visit my Rheumy in 4 months and I’ll discuss then….Thanks again for sharing your struggle❤️❤️🙏🏼🙏🏼🙏🏼☮️☮️