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Wife with Lupus won't see doctor
An_251592 posted:
My wife was unofficially diagnosed with Lupus about 30 years ago; she has never been officially diagnosed. She exhibits certain symptoms: fatigue, joint pain, butterfly rash, sensitivity to light. I want her to see a doctor for treatment, but she says the lupus is in its "end stage" (her words), and that there's nothing a doctor can do to help her. My question is three-fold:
1.) Are there any tests that might indicate lupus?
2.) I was looking at WebMD for home treatments. Can a physician provide any treatments?
3.) Is lupus fatal?
I'm really in the dark here - any help or guidance would be helpful. Thanks.
lupylisa44 responded:

Your wife should really be monitored by a rheumatologist to track the activity of her disease. There are many medications that can help control the symptoms of lupus, but there is no cure.
Lupus can be managed very well with these meds.

I am not sure what she means by "end stage" lupus. Lupus is a disease of flare-ups and remissions. Unless she has organ involvement, which she probably wouldn't know since she hasn't seen a doctor, lupus can be well managed in most people

Lupus can affect ANY organ in the body including heart, lungs, brain , liver, kidneys etc.. Often lupus organ involvement , such as lupus nephritis (kidney involvement) has no outward symptoms. The only way to know if you have it is to be monitored regularly by a doctor. If gone untreated, it can cause kidney failure and death.

So to answer your last question: Yes, Lupus can absolutely be fatal! Sadly, we have actually lost several members of this board to lupus over the years. They were all being treated by a rheumatologist and still succumbed to the disease. It is really nothing to mess around with!!!

There is lots of great information in the tips and resources section of this board that you might want to check out (on the right had sice of the page) to get more information about the disease.

There is no single blood test to diagnose lupus, but there are 11 criteria used in addition to bloodwork to determine a diagnosis.
IF you have 4 out of 11 it is likely you have lupus.

  • Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
  • Scaly rash, called a discoid rash, which appears as raised, scaly patches
  • Sun-related rash, which appears after exposure to sunlight
  • Mouth sores, which are usually painless
  • Joint pain and swelling that occurs in two or more joints
  • Swelling of the linings around the lungs or the heart
  • Kidney disease
  • A neurological disorder, such as seizures or psychosis
  • Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
  • Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
  • Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

  • I hope your wife gets the treatment she needs!!!

    With love, with patience and with faith, we'll make our way.

    With Lupus

    WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
    at work, or with family
    and friends.
    Visit Lupus Day2Night

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