My boss, also a close friend has lupus. She made a comment the other day about only living 5 more years.... i mentioned it to her back jokingly that no, she was going to live until age 80. Today we were talking on a more serious note, and she said it has been "proven" that people with Lupus only live 5-10 years past the diagnosis time, and usually not past 50ish. She said even her Dr. Told her she had the body of a 65 yr old woman and wouldn't live 10 more years.

I know this can't be true. I know many days she does feel older than what she is, (she's 46) and the pain can be very hard to cope with all the time... but this is not a death sentence?????

IF you guys have any websites that i could show her, with facts of a good prognosis, that would be awesome... i can't even imagine the stress and worry just thinking she has 5 - 10 years left to live would be like. She said she has heard this from other Dr.'s too. :-(

There are many people with an SLE dx who live many decades, some with a totally normal lifespan.

In part, that's because SLE diagnosis has become more sophisticated over the decades. In decades past, SLE was thought of as a death sentence -- because it was usually the most severe cases that were dxd.

We now know that some SLE is relatively mild, others a little more serious, and unfortunately, some SLE is very severe, affecting CNS or kidney function to the extent that lifespan is shortened.

I can't say how severe your boss's disease is, however the fact that she is able to work does say something.

Depression and/or attention-seeking behavior may also account for some of the comments you've heard.

As far as it "being proven" that people w/SLE dx don't live more than 5 - 10 yrs. -- PSHAW!!
I think your boss should re-evaluate that "proof."

Perhaps there's a way you can help your boss focus on health-promoting behaviors & lifestyle? Many middle-aged people struggle with one sort of chronic disease or another. Being positive & proactive can be very helpful to both quality & duration of days.

Best wishes.

I have been diagnosed for 30 years. And like most of us, I am sure I had it before then. I have heart and liver involvement. I have APS and have had 3 strokes) (A clotting problems) It is getting close to the point were I can't remember life without lupus. I was 16 when diagnosed, and had a pretty good time dealing with it at first. But, the older I got, the worse my medical problems became.

But anyway, your boss is very wrong. If her doctor is putting a time limit on her life, I would recommended getting a new doctor.

Alison

[This Message was Edited on 09/24/2009]

I was diagnosed with Lupus when I was forty years old. Immediately, I went to my public library and looked in a book about Systemic Lupus. Obviously, this was an old book and gave a very grim outlook for anyone with this disease and a shortened life span. I panicked, went back to my doctor who reassured me. He said that that book was out of date and with all the treatments available now, a long life was possible to most patients with lupus.
I have tried to take good care of myself and although I have flare ups now and then, have avoided any life threatening episodes since my first one when I was forty.
I hope this will give some encouragement to your friend.

I think your friend should change doctor's and get one a bit more positive. I have had lupus (that I know of) for 12 years. I just went through a really bad flare and it did mess with my kidneys and I have lost my hair...however, this is the first time. I plan to live a long time and my doctor says there is no reason I won't. Some people do have lupus really really bad and usually have other medical situations that is more than serious for them but it sounds like your friend is not one of them... thank God. Sharon