Lupus Site - a guide for lupus patients and their families

So, you think you may have lupus? What should you do now?

Swollen, or painful joints
Do you get a rash when you go in the sun?
Do you get mouth ulcers?
Do your fingers/toes go blue, white or red in the cold?
Have you ever had a low red blood cell count (anaemia), low white cell count, or low platelet count?
Do you get extreme fatigue, even when you've had a good night's sleep?
Have you ever had pleurisy (pain in the chest on breathing in)?
Do you get a red rash on your face, across your cheeks and nose, in the shape of a butterfly?

If you've answered yes to three or more of the above questions, then there is a chance that you may have lupus.

Look at your symptoms, to get a diagnosis of lupus, patients usually must have at least four of the following-

1. Characteristic rash across the cheek
2. Discoid lesion rash
3. Photosensitivity
4. Oral ulcers
5. Arthritis
6. Inflammation of membranes in the lungs, the heart, or the abdomen
7. Evidence of kidney disease
8. Evidence of severe neurologic disease
9. Blood disorders, including low red and white blood cell and platelet counts
10. Immunologic abnormalities
11. Positive antinuclear antibody (ANA)

Get yourself a good doctor who knows a lot about lupus. Contact your national lupus charity (e.g. Lupus Foundation of America, Lupus UK) who should be able to recommend a good lupus doctor.

If you already have a doctor who isn't very good or isn't taking your symptoms seriously, ask to be referred for a second opnion.

Keep on going and believe in yourself. Many lupus patients often say they feel like hypochondriacs when visiting their doctor because of all the minor symptoms that they want to report. It can be a long, hard road to get a diagnosis & it's easy to want to give up. Sometimes, even their families begin to question whether there is anything really wrong. The important thing to remember is that you know that there is something wrong, so you must keep going until you get an answer.

Make a note of all your symptoms, even the ones that you think are not connected. Take this list with you when you see your doctor. Also make a list of any questions you have.

Learn about lupus, read books, search the internet & be informed about the symptoms, treatments & tests. This will help you to communicate with & better understand your doctor & what is happening.

Autoimmune diseases tend to run in families, although they can change in their expression from generation to generation. Your grandmother may have had lupus, your mother Graves' disease, or your sister diabetes. Look back at your family history, and tell your doctor if anyone had an autoimmune disease, it may help with the diagnosis.

Talk to others. If you are unable to discuss things with your family or friends, make contact with other lupus sufferers, either through a lupus charity, support group or the internet. People often tell me what a relief it is to talk to others who know what they are going through. Visit our message boards for support and advice.

Remember - never give up, keep going until you get a diagnosis!