I was wondering if anyone had CNS lupus and was later diagnosed with Kidney disease/failure. I have had Lupus for over 10 years. Although it has been predominately attacking my central nervous system, it seems to attack other organs or systems simultaneously. My doctors said the Lupus is getting worse/progressing now that it has attacked my kidneys and they are starting to fail. I am still in the mist of finding the cause of the failure.
Is this normal for Lupus to change and/or progress? It seems to have attacked every part of my body at one point or another - Pancreas, Colon, Liver, Spleen, Ovaries, Uterus, Thyroid, Stomach, Esophagus, eyes, joints, as well as blood and numerous CNS problems, etc. I never heard of Lupus attacking an organ, going away, attacking another organ, and then another, on and on. Also, now when Lupus attacks, the flares are more severe and life-threatening - not just inflammation of the organ anymore. Is this possible? It seems to migrate, although predominantly with CNS problems. It seems weird that it flares in several areas at once.
Is this what the doctors mean by the disease is advancing? Initially, I was told that it wouldn't progress. I am very confused. I feel like a cat with 20 lives instead of 9. Has anyone experienced this type of thing? Thanks again - Kristin
It sounds like you need to find another doctor or clinic and get aggressive treatment to suppress lupus. You do not say what meds you have taken or what you are currently on. Aggressive treatment for severe cases is very important.
Don't know where you live but you should run, not walk to the best clinic or team of doctors you can access.
It is normal for untreated or improperly treated lupus to progress and change.
Hope you can get answers but sound like you are not from your current doctors.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (7mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller