I am a 72 yr old female. Recently, dx w/lupus. Had a rash for a couple of yrs that my primary said was an allergy. My eye MD wanted me to see an allergist immediately. He dx the lupus. No information given and what I have learned I learned by looking up lupus with hallucinations, stage 3 Kidney disease, dx yrs ago with fibromyalgia. Symptoms started in my 20's. Pushed my self as an RN until I was 65. Went on the disability. Fatigue was overwhelming and so was the pain. My ribs hurt in my 20's, pain that rotated and confused MD"s giving me a dx of hypochondriac. Everything hurt, but in different places. One time it would be the left side then the right side. Now my bladder hurts and I have RBC & WBC's, but cultures show no infection. I bought some AZO that says urinary pain relief. It works. It says not to take more than 2 days w/o seeing a doctor. I think it is like puridion ? that turns your urine orange. AZO does also. I have not had any black outs w/hallucinations for over a yr. Thank God. I had hallucinations while awake also. The black outs were the worse. One time I thought I was John Wayne and that a bomb was in a school and I was the only one that could save the kids. I ran up and down the hospital hallway yelling Allah, Allah. I did not remember a thing, the nurse told me laughing her head off. But then they did send in two far eastern looking ladies asking me why I was yelling Allah. I thought it was a trick and was afraid to answer. finally I said in a low voice, but determined. I could never hurt a child. They smiled and left the room. What an odd experience that was. Other times. know one would tell me except to say, I wasn't myself and acted odd. And off I would go to the psych ward again. I am glad to be done with that for a yr now.

5 Replies

  • PS I read that those dx after age 50 have a worse prognosis. The sun is like a poison to me.

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    It sounds as if you have had a very rough time. As a nurse, I am sure you know that getting a diagnosis for SLE can take years - many years. In retrospect, I probably had SLE from puberty with a first major flare when I was 17 years old, but I did not get a diagnosis until my 30s after seeing 6 rheumatologists!

    SLE can cause neuropsychiatric symptoms. They are not uncommon. Usually, they are treated by heavy doses of IV steroids etc and the results are always successful. However, unless a doctor knows this is neuropsychiatric lupus, you will be taken to the psychiatric unit, which causes further delay in effective treatment.

    In SLE, it is common that the urinanalysis will show "PUS" cells. A doctor may insist it isa UTI and give unnecessary antibiotics, only to find the culture is normal ie no infection. This happens regularly to me. Of course, it is necessary to be checked by an urologist who will rule out any problems. There should never be any assumptions and it is far better to see a specialist in that area.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!


    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

  • Thanks for the quick reply. Is there a site in the USA? This site is God-sent.

  • We have many Members from the US. There is also the Lupus Foundation of America. You can find the nearest Chapter near to you.

  • I will ck it out and see if I like it as much as I like this site. My use both. Thanks