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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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    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.

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    Saysusie
    awesome! thx saysusie. you summed it up so well!

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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!!

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    Quote Originally Posted by Saysusie View Post
    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
    Namaste
    Saysusie
    Hi Saysusie

    I didn't get diagnosed until I had menopause and because of the " advanced" age of the diagnosis my rheumy told me the lupus was worse, because I had gone undiagnosed for so many years. He thinks that I had it almost all of my life. It makes sense, because I went so many years,untreated.
    I am 53, in full menopause for three years now and have a flare, pretty much every 2-3 months, which last for about 3 weeks.
    I started getting this bad, about 4 years ago, when I was pre menopause.
    I have heard about the hormone thing and lupus before, but I think that is just a theory, otherwise menopausal women, or men wouldn't have lupus.
    At least that is what I think.

    Debbie

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    Rob...right there with you...I probably had symptoms since I was about 20...that was 26 years ago!! Still here to chat with all my fellow Lupies! Thanks to all of you.
    Last edited by pandagirl; 01-03-2010 at 02:07 PM. Reason: typo
    Andrea

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    I doubt that it's true. I was diagnosed 15 years ago and I'm not dead yet. Thank goodness! Actually, I feel a little stronger. Not physically, of course but mentally. I've lived 15 years like this so I know I can manage more. That's just me though. lol.

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