Leukocytosis, Acute Flare up, I'm scared.

I'm in crisis mode, I'm super scared. I feel awful. The rheumatology clinic won't see me for a month. I saw oncology/hematology that checked my bone biopsy making sure it was not leukemia/cancer. My primary care physician is too scared to treat me. I can not use steroids, they do NOT work for me (Made everything 10 times worse). My b/p and heart rate is through the roof. I have a sore in my mouth, +2 edema to bilateral lower legs, my hands swell when up. My lovely rash on my face is is at its worse. I'm coughing phlegm (clear) throughout the day. My ANA is positive for the first time. My cells are a shift to the left without infection. I'm a nurse, and I'm scared. I feel as my medical providers have let me down and alone. Rheumatology is over booked here in Ia. Please anyone, if you have ideas of treatment options or success stories for me to look forward to or give me hope, I'd greatly appreciate it. I've had lupus for 12yrs plus. I had nephritis with sepsis 2yrs ago.  I've not had problems until now again.  For 7 years my primary treated symptoms.... my chronic fatigue, unable to sleep due to night sweats. I have Reynolds too, add injury to insult. I just wanna get better, be there for my family and not this horrible disease process. I


  • JudyTDJudyTD Member New Member
    My ONLY and heartfelt advice is to find a more caring and compassionate Physician.  A month before an appointment?  I think it's ridiculous.  In the beginning I traveled out of State to a Physician who was well recommended.  You feel like you've been let down because you HAVE been let down.  I also have Raynauds.  I have found that my SLE has its ups and downs - I just have to ride it out BUT I have capable, understanding Physicians.  I wish I had magic words, but I don't. My #1 rule is to take care of yourself.  Learn to say no on bad days.  I'm so sorry you are going through this without a Physician at your side.
  • HEIDIHEIDI Member New Member
    I don’t have any advice other than I too am in a crisis and a nurse . Elevated white count fever and body aches but negative flu . On antibiotics and steroid dose pack . I feel terrible and after two hospital visits they don’t know what’s going on :/
    I start Cellcept in a week but I’m afraid it’s gonna kill my immune system and cause sepsis. I went to Mayo Clinic twice and I did find them to be helpful . Google admissions or call and explain situation. They can help sometimes when no one else can . Stay strong 💪🏻 
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