Blood work doesn't show anymore but i'm in the middle of a flare??

Blood work doesn't show anymore but i'm in the middle of a flare??

I was diagnosed with Lupus in 2001. During the first few years i had severe symptoms, discoid lupus in my scalp, back of my thighs,and elbows. my kidney's, heart, and lungs were shutting down and I had vasculitis. I was in the hospital for a few weeks and the doctor sat down with me and told me that they didn't know what to do. I eventually got better and actually went into remission for a few years... I said all that to say that I am now in the midst of a flare and the doctors say that I don't have Lupus because my blood work comes back clean with no Lupus markers (It hasn't shown since 2013) . They don't believe me despite my legs giving out in me, all my stomach issues and my hair falling out. What should I do?


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11 Replies

  • Can you find some new Drs? My labs had been abnormal for years because of a blood abnormality that I have. So it covered up the lupus in my results. Because of my physical symptoms the first rheumy I saw said well it sounds like SLE but without the labs I won't treat you. Then the 2nd said yes it's SLE and yes you can have it without a positive ANA. But he wasn't very proactive and I kept getting worse. Now I've finally found a rheumy and his infusions team who see how sick I am and try so hard to help. The fact is you can have active lupus without it showing in your lab work. I know it's super hard when things don't show up typically but keep looking for the right specialist for you. I was so discouraged until I found this one.

  • Thank you for your reply! It mirrors my experience! They treat me like I am an addict. It's so bad that I had to ask for Toradol (sp) and they will give me that. Then it is made worse because i am chronically anemic so my blood pressure is always low and when they check it to see if i'm actually in pain, it comes up normal! Lol... The same thing happens with a fever. Even when my heart, lungs and kidney were shutting down, I never had a temperature. I've only had a severe temp (107) last year when I has sepsis. But anyways back to your advice. I have an appointment with a new rheumatologist on the 17 of this month, so hopefully he will know all facets of this disease and treat me accordingly. Thank you again for your help and I will let you know how it goes!

  • My labs do that do Dr. said I still have it just currently sero-negative.

  • I am so glad that I am not alone! I have an appointment with a new doctor and hopefully he will know how to treat me! Thank you so much!

  • Yes this is what they call mine as well. Sero negative, because you have active disease but doesn't show in labs. You am have sero negative RA as well as another diseases. The problem is some rheumatologist refuse to believe in sero negativity even with the proven physical symptoms. You should see if you can find a rheumy who treats sero negative cases. Hope you find a good one soon. 😊

  • Hi lupusforme,

    It may be best to ask for a referral to a different consultant, perhaps a rheumatologist who specialises in lupus. Where do you live?

  • I live in California. Thank you for your help. I have an appointment with a new Rheumatologist on the 17th and I pray that he is knowledgeable!

  • Good luck on the 17th. Let us know how you get on.

  • I will, thank you!!

  • Hi I live in California too. How did your appt go with the new rheumatologist?

  • I never received a referral!😞 I'm sorry that I'm just now responding!

    I'm in Texas now and I will have a social worker assisting me with finding all of my doctors! I hope you're well!

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