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Thread: lupus and survival rates

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    Default lupus and survival rates

    hey everyone!

    i hope i'm not alarming anyone with my question, but i have to ask. . . this is something i have never understood since my diagnosis. i'm not worried about dying, i just like to understand and be informed.

    i see all the time: lupus patients, 90% survival rate of 5 years after diagnosis, 80% survival rate of 10 years after diagnosis. so, what after that? does the survival rate decline each 5 years?! thanks in advance to anyone who took the time to read and respond!

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    No...they don't do a study past 10 years! Most of these studies only covered a 10 year period (like 1990 to 2000). So, they take the survival rate (and it is the mean survival rate) of that 10 year period and express it in percentages.
    There are very few studies that have been done over a 20, 25, or 30 year period, therefore, there are no numbers for that span of time.
    So remember that the survival rate is based solely upon the period of years that the study was conducted.

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    alright so most of us are diagnosed in out 30s and could go into menopause at 50 at which point our symptoms are supposed to calm down some. do our survival rates rise after that? If you have a really dangerous case of lupus, do they ever enduce menopause? cuz I know that whatever rheumatology is brewing inside me is very agrovated by my period.

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    Quote Originally Posted by Saysusie View Post
    No...they don't do a study past 10 years! Most of these studies only covered a 10 year period (like 1990 to 2000). So, they take the survival rate (and it is the mean survival rate) of that 10 year period and express it in percentages.
    There are very few studies that have been done over a 20, 25, or 30 year period, therefore, there are no numbers for that span of time.
    So remember that the survival rate is based solely upon the period of years that the study was conducted.

    Peace and Blessings
    Namaste
    Saysusie
    awesome! thx saysusie. you summed it up so well!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    I don't pay any attention to those survival rate figures because I plan on living forever!

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    How would menopause affect me i had a complete hysterectomy in 94 and in 2006 is when i was diagnosised. I do not understand any of it but i do a lot of research on all my tests and blood work i get done to try and ask the right questions of the doctor. Bonita

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    I've not heard any reliable research or numbers on survival rate linked to menopause. What I've read is that menstruation is affected by Lupus and, often, flare-ups occur during the menstrual period. Since those hormones are reduced during menopause, flare-ups due to THAT reason are diminished. For many women, this does mean that their Lupus seems to calm down. However, that is also dependent upon the type of and severity of your individual Lupus (if organs are involved and/or damaged, amount of tissue and/or joint damage, etc.).
    I would say that survival rate, as Rob said, depends greatly upon YOU!! How well you take care of yourself, how well you abide by your treatment regimen, your state of mind, and your determination to manage your disease and live as well as you can with your disease! Please do not get bogged down in the survival rate issue..all of the numbers are "mean" and, as such, have very little bearing on us individually!!

    Peace and Blessings
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    Saysusie
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