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WantItGone
12-17-2009, 06:13 PM
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!

Saysusie
12-17-2009, 09:31 PM
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

ricketyrose
12-18-2009, 06:36 PM
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.

WantItGone
12-19-2009, 05:53 AM
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!

rob
12-19-2009, 10:50 AM
I don't pay any attention to those survival rate figures because I plan on living forever!

Bonita
12-19-2009, 01:42 PM
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

Saysusie
12-20-2009, 10:45 AM
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

debbie-b
12-20-2009, 04:45 PM
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

pandagirl
12-20-2009, 06:29 PM
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.

wolfwhisper
12-20-2009, 09:50 PM
I doubt that it's true. I was diagnosed 15 years ago and I'm not dead yet. Thank goodness!:laugh: 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.

Saysusie
12-21-2009, 02:50 PM
Hi Debbie;
I would venture to say that, since there is no known cause for Lupus and there is no known cure for Lupus, that almost everything is a theory. Everything is based upon research and theories about medications, genetics, hormones, predispositions, environmental influences, and the list goes on and on and on! So, I agree with you 100%!

Peace and Blessings
Namaste
Saysusie

rob
12-22-2009, 03:29 AM
I doubt that it's true. I was diagnosed 15 years ago and I'm not dead yet. Thank goodness!:laugh: 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.


My Mom is 73 years old, and was diagnosed with SLE 19 years ago. She's still kicking butt and taking names!

brandichi
12-22-2009, 06:24 AM
I agree with what everyone else has said - I met a man well into his 80's at a meeting once who was diagnosed with lupus many years ago, and was doing fine. The health issues he has are much more because he's in his 80's than because he has lupus. I intend to be like that, still active and spunky 40 years from now and lupus won't stop me!!!!! My grand plan is to work until I'm 54 and have my 30 years in, retire, enjoy life here for about a year, then move to a little stone cottage somewhere in Scotland, not far from Edinburgh. :yes:

WantItGone
01-01-2010, 08:14 PM
Thanks for replying everyone!

I was really just confused when I read those stats over and over again.

I think sometimes I do think about it but overall I wouldn't necessarily say I'm worried. I really have been focusing lately on just improving my overall health as best as best as I can. I think I posted already but in case I haven't, I cut out all wheat, yeast, bread, dairy, coffee, tea, sugar substitutes from my diet. It'll be 3 weeks this coming monday. I definitely can say I almost feel like my old self. The pain I had in the middle of my back (which turned out to be disc narrowing and caused arthritis) is literally gone. I can only feel it when I arch my back. I'm sleeping past 4 am again & don't feel the aches in my joints and burning in my muscles as much. Not even enough to complain about. I quit eating any sweet with sugar about 2 years ago and nightshade veggies (potatoes, peppers, and tomatoes) and definitely felt a difference. Eliminating flour just worked wonders! I'm sure I'll miss my morning bagel, my 6 inch subway sub, and pizza (countless other things 2, lol) but it's worth it. I feel amazing. I have so much increased energy. I don't feel like lying in bed all day and I rarely take my flexerill and neurontin or motrin. So, anyone reading who has all the lupus and/or fibro symptoms, google candida & stay away from the white poisons, flour and sugar. I can't see myself ever going back to eating them. I'd be crazy to do so.

Saysusie
01-02-2010, 10:26 AM
I am glad to hear that you are feeling better and that your change in diet has helped you. You may not have to miss as much as you think you do. If you have a good health food store near you, one that sells gluten free products, you may be able to have a sandwich here and there and even some cookies once in a while.
I found gluten-free; sugar-free; dairy-free macaroons at my health food store and they were actually tasty!

Canvass your health food stores to see what is available. You might be pleasantly surprised:yes:

Peace and Blessings
Namaste
Saysusie

tiggerlishus - Heidi
01-02-2010, 05:20 PM
i don't know how true it is but i read that alot of the statistics were from 70. 80's before the progression of treatment
but i'm very much with you rob!! i worry about dying young but am determined to live forever lol !!
really and truely i think you have ot take life day by day and not worry to much about the future just enjoy what you can now no matter if you have lupus or not
you never know what coming round the corner many peopel that know me or here know that i lost my dad suddenly in a car crash and 6 months later lost a uncle suddenly when he was murdered
my dad 50 and my uncle 46 and neither had serious illness so from that i have learnt a lcurve ball can be trhrown at any point soo just try and enjoy what you can each day from small things like being able to get
out of bed in morning to big things like having loved one around us!

WantItGone
01-02-2010, 06:39 PM
thanks saysusie. i'll take a look @ whole foods. i assumed i couldn't eat bread of any kind since i thought any bread (even gluten free) contained yeast or wheat. i'm ok w/not eating flour. i can live w/o it. i feel great!

WantItGone
01-02-2010, 06:40 PM
just wanted to say, i wasn't necessarily worried. i was just confused when reading about the stats. thanks 4 posting!

MdGuy
01-02-2010, 11:43 PM
I agree, that the study's haven't went past 10 year's. But I would look at the possibilities. I would like to base it for myself, on my learned experience with Karen for instance :27 year survivor, other lupus nephritis patient's 15 yearSurvivor, I have met through different website forum's. I'm sure every patient's symptom's and level of illness can play a role, but from a supportive stand point, Karen has proven to me that the way she or other's will handle their illness a lot of times will effect the life expentency of a lupus SLE patient. For the mind can control the body being a proven fact Karen told me to tell ya and depression or non exceptence will hinder the strength needed to fight the illness. If karen a or anybody I think believed in the statistic's, the survival rate would be lower. Like it was said in another post, refuse to believe or except it. Do the thing's that are proven to help like: Having a good doctor & pateint relationship, Stay in tune with your illness and symptom's and your already a part of a good support network or you wouldn't be reading this. lol Seriously, It's a very complex disease with a lot of uncertaintys, but I believe in what Karen has taught me so far in life and from what I've talked about and read about on more positive then negitive , from what was offered in the past. So I would keep good spirit's no matter what you may learn. For A positive attitude and strong determination can get people far in life. Another proven fact for statistic purpose's.
So my point is whatever may be written in black or white, I'd rather keep focused on the positive side, go with what I know and experience, except what I can't change for Karen, and ask myself how I can help the situation.
MdGuy~