Living with Systemic Lupus: Can I live a normal life?

Posted by jujazz2 @jujazz2, Feb 18 3:16am

Can I live a normal life

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@jujazz it depends on your symptoms and whether the lupus affects internal organs. I have had the diagnosis since 2001 and get sick in the sun, but am fortunate in that it has not affected kidneys or other organs. Hope that is true for you! I was on Plaquenil for years but stopped 10 years ago. What meds are you on?


@jujazz2 Well, it depends on what you consider a normal life! Systemic lupus can manifest in many ways. I was diagnosed in 1988, and am considered to have a fairly minor case. That said, I still am sensitive to sunlight, stress, and heat, among other things. For many years they thought my high urine protein levels were caused by the lupus, but it turns out it was actually an ultra-rare kidney disorder.

Have you been diagnosed with systemic lupus? What medications are you on?


Hi Ginger , thanks for your reply. It’s my niece I was asking about . At this time , Docs are trying to come up with a diagnosis.


Hello Ladies,
I was diagnosed in 1997, after I had a long high level toxic exposure of termite poison that was sprayed all around the inside of my high rise. It was really scary some of those years when my weight dropped to 88 , with fever and big throbbing joints. I took a medication from Europe that did help me but you had to take it twice a day, plus all the other standard meds offered. I now have some symptoms but not like when I was in my forties and fifties. I guess what I am saying is, you might have a case where your symptoms get better as you get older. I have been on biologics, and they really did help with less side effects than steroids , no or low side effects with the Plaquenil. The doctors might treat you as a Lupus patient but call it Mixed Connective Tissue Disorder. This label covers immune disorders that do not fit the profile of Lupus because it is not part of your DNA. I do not have it in my DNA but have the blood work that shows the other markers. I hope this helps some of the people that are wanting to know if they will get better over time.


Hi. It depends on the severity of your lupus. Like someone mentioned, if it starts to affect your organs, it will make things worse. My doctor has swung between lupus and mixed connective tissue disorder for months and months. It has affected my nasal cavities, my hearing, And my kidneys. I now have to wear hearing aids due to the damage done in both ears. I’ve also had two surgeries trying to correct my Eustace tubes and nasal cavities. Both are temporary fixed and must be repeated. The doctor said my hearing won’t come back. I was also recently diagnosed with rheumatoid arthritis, and some kind of eczema that won’t go away. Definitely stay out of the sun only wash with warm water including your hands. I am now taking methotrexate. Is anyone on here taking methotrexate?

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